<![CDATA[IBD Connect - Blog]]>Tue, 16 Jul 2024 00:04:15 -0400Weebly<![CDATA[Introducing IBD Connect's Volunteer Program: What Does it Mean to be a Volunteer?]]>Mon, 01 Jul 2024 04:00:00 GMThttp://ibdconnectinc.org/blog/introducing-ibd-connects-volunteer-program-what-does-it-mean-to-be-a-volunteer
Have you ever wanted to volunteer your time and make a difference in the lives of pediatric IBD patients and their families? With the recent launch of IBD Connect’s Volunteer Program, you now have a meaningful way to contribute and make a lasting impact. In today’s blog post, we’ll unpack the details of this program and discuss what it truly means to be a volunteer at IBD Connect, addressing these fundamental questions:
  • What is IBD Connect’s Volunteer Program?
  • What impact and importance does volunteering have?
  • Who can participate in IBD Connect’s Volunteer Program?
  • How can I participate in IBD Connect’s Volunteer Program?
  • If I have questions about the program, where can I go for help? 
We hope this post is both informative and inspiring! Remember, your actions and attitude can make a tangible difference in the lives of others. Don’t hesitate to give back to the IBD community!

What is IBD Connect’s Volunteer Program?

As many of you know, IBD Connect Inc. is a 501(c)(3) nonprofit organization with a mission to support, engage, and empower pediatric inflammatory bowel disease (IBD) patients and their families. Our comprehensive programs and educational resources are specifically designed to do one or more of the following: support IBD families in need, engage IBD families in building a strong community, and empower IBD families to make a difference in the lives of other families in need. 

Our Volunteer Program is a cornerstone of this mission. We believe that our Volunteer Program truly embodies each of these core principles. Volunteers play a pivotal role in providing support to IBD families in need. Through their active engagement with the IBD community, volunteers facilitate connections, share experiences, and cultivate a sense of belonging and understanding amongst other IBD families. Moreover, volunteers serve as catalysts for empowerment, equipping IBD families with the tools, knowledge, and support network needed to advocate for themselves and others. 

IBD Connect’s Connect’s Volunteer Program offers several avenues for your unique skills and talents to be utilized. There are several positions listed on the “Volunteer” page under the “Get Involved” tab of our main website. These positions include:

  • Grant Writer Volunteer
  • Event Coordinator Volunteer
  • Support Group Facilitator Volunteer (Occasional)
  • Social Media Associate Volunteer

You can read more about these specific positions, as well as view the responsibilities and skills required for each position, on our main website. In addition to our listed open positions, we also offer a “Volunteer Inquiry Form,” available on our main website. If you possess a particular skill or expertise that is not currently listed in our available open volunteer positions, you can complete this form to express your interest in volunteering your unique talent. 

What Impact Does Volunteering Have?

At IBD Connect, we believe that volunteering is more than just a way to give back; it’s an opportunity to create lasting change and make a profound difference in the lives of those in need. Let’s explore the significant impact of volunteering with IBD Connect through our available positions.
  • Supporting Families: Volunteers provide essential support to IBD families, helping them navigate the challenges of managing IBD through shared experiences and resources. Whether through organizing events, facilitating support groups, or crafting engaging social media content, volunteers offer crucial assistance that can make a real difference in the lives of real families facing IBD.
  • Building Community: By fostering connections and a sense of belonging, volunteers help create a strong, supportive IBD community where families feel understood and less isolated. Event coordinators play a key role in bringing people together through thoughtfully planned activities, while support group facilitators ensure that families have a safe space to share their experiences and offer mutual support.
  • Empowering Others: Volunteers empower IBD patients and their families by providing them with the knowledge and tools they need to advocate for themselves and others. Social media associates amplify the reach of IBD Connect's educational resources and advocacy messages, while grant writers secure essential funding to support programs that equip families with necessary information and tools.
  • Personal Growth: Volunteering offers personal rewards, including the development of new skills, increased self-awareness, and the fulfillment that comes from making a difference. Grant writers enhance their research and writing abilities, social media associates refine their digital communication skills, support group facilitators build leadership and empathy, and event coordinators develop organizational and planning expertise.
  • Raising Awareness: Volunteers play a crucial role in spreading awareness about pediatric IBD and the challenges faced by those affected, helping to educate the broader community and reduce stigma. Social media associates create compelling content that highlights these issues, while event coordinators plan impactful events that draw public attention and support.
By volunteering with IBD Connect, individuals contribute to the well-being of others but also experience significant personal growth and satisfaction. The impact of their efforts ripples through the community, creating a more informed, connected, and empowered network of families and advocates. Whether through direct support, community building, empowerment initiatives, personal development, or awareness-raising, volunteers at IBD Connect make a lasting and meaningful difference.

​Who Can Participate in IBD Connect’s Volunteer Program?

All potential volunteers must be 18 years of age or older to apply. However, for certain positions (as specified in the position applications) individuals under 18 are welcome to assist an adult volunteer (e.g., a child assisting a parent). In such cases, the adult volunteer must apply for the position and assume full responsibility for supervising all volunteer activities. This policy ensures the safety and well-being of our young volunteers while adhering to our organizational standards. Additionally, IBD Connect’s Nondiscrimination Clause is listed below for your review.

Nondiscrimination Clause:
IBD Connect Inc. is committed to upholding equal opportunity principles within our Volunteer Program. We are dedicated to providing access to volunteer opportunities and their associated benefits without regard to age (must be 18 years or older), race, color, religion, sex, national origin, disability, or any other protected status, as outlined by relevant federal, state, and local regulations. This commitment applies to all aspects of our volunteer program, including the recruitment, selection, and engagement of volunteers. Discrimination has no place within the operations of our organization.

How Can I Participate in IBD Connect’s Volunteer Program?
If volunteering your time and talents with IBD Connect is something that interests you, you can participate in IBD Connect’s Volunteer Program via our main website. Find our “Volunteer” page under the “Get Involved” tab. On this page, you’ll find more information about this program, our available volunteer opportunities, and our “Volunteer Inquiry Form.” If you possess a particular skill or expertise that is not currently listed in our available open volunteer positions, you can complete this form to express your interest in volunteering your unique talent. You can also feel free to email IBD Connect’s Executive Director, Lisa Forunier, via email at lisafournier@ibdconnectinc.org for more information. We look forward to your participation and the unique contributions you can bring to our community!

If I Have Questions About the Program, Where Can I Go for Help? 
For any questions, concerns, or additional information about our Volunteer Program, please don't hesitate to contact our Executive Director, Lisa Fournier, via email at lisafournier@ibdconnectinc.org. We’re here to support you every step of the way! You may also view all of the information discussed above in greater detail, or apply to specific positions, on the “Volunteer” page under the “Get Involved” tab on our main website, www.ibdconnectinc.org

In conclusion, the launch of our Volunteer Program provides an exciting opportunity for others to join us in our mission to support, engage, and empower pediatric IBD patients and their families. Your contributions will help build a supportive, empowered, and informed community. The personal growth and fulfillment that come from volunteering are invaluable, and your efforts will play a crucial role in raising awareness and reducing stigma associated with pediatric IBD. We invite you to join us in this rewarding journey and make a difference. Visit our main website to learn more and get started. We look forward to exploring potential opportunities for collaboration and creating a positive impact together. As always, stay strong IBD Warrior families!
IBD Connect's Main Website
IBD Connect's Volunteer Program Page
Emily's Email
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<![CDATA[Introducing the IBD Connect Inc. Blog Collaborations Program]]>Sat, 01 Jun 2024 04:00:00 GMThttp://ibdconnectinc.org/blog/introducing-the-ibd-connect-inc-blog-collaborations-program
Have you ever felt the desire to share your journey with inflammatory bowel disease (IBD) and truly make a difference in the lives of others? Have you ever wished for your experiences with IBD to serve as a source of insight and support for those facing similar challenges? Do you long to feel a sense of empowerment after sharing your story? At IBD Connect Inc., we're so excited to unveil our latest initiative, launching today, June 1st, 2024: the Blog Collaborations Program. It is our hope that this program will provide you with these opportunities by inviting you to share your unique journey with IBD through our online blog. Whether by crafting a guest blog post or participating in an interview-style feature, everyone impacted by IBD is encouraged to contribute their voice. 

In today’s blog post, we’re going to discuss the details of this program. We’ll address some fundamental questions:
  • What is the Blog Collaborations Program? 
  • Who can participate? 
  • What is the purpose behind the program?
  • Why should I participate? How do I do so?
  • If I have questions about the program, where can I go for help?

We hope that this post will be both informative and encouraging. Remember, your voice matters!

What is the Blog Collaborations Program?
Our Blog Collaborations Program is a program that allows anyone impacted by IBD to share their unique journey with IBD in writing through our online blog. The program provides two avenues for participation:
  1. Guest Blog Posts: Share your story, insights, and experiences with the IBD community through a written blog post. Whether it's a personal narrative, informative/educational piece, or advocacy-focused article, your contribution can make a meaningful impact.
  2. Blog Interviews: Engage in a written interview with our team, where we'll guide you through a series of questions designed to highlight your journey with IBD. This interactive format offers a personal and dynamic way to share your story.


If you’d like more information about the requirements for each of these avenues, please continue reading below.

Additional Information and Requirements Regarding Guest Blog Posts: 
  • Length: 500-2000 words
  • Formatting: ​​Please format your blog post using a 12-point Times New Roman font, double-spaced. This will ensure consistency and readability across all submissions. Thank you for your cooperation! Please submit your post as a Word document or Google Doc, accompanied by any images or graphics you wish to include.
  • Content: We welcome original and pertinent submissions tailored to the IBD community, centering around personal experiences, practical advice, advocacy efforts, educational insights, or any topic relevant to pediatric IBD. While crafting your post, please consider that our blog primarily serves parents and caregivers of children diagnosed with pediatric IBD. However, we encourage contributions that resonate with anyone impacted by IBD, fostering a diverse and inclusive dialogue
  • Review Process: Our team will review all submissions for relevance, clarity, and adherence to our guidelines. We may provide feedback or request revisions before publishing.
Additional Information and Requirements Regarding Blog Interviews:
  • Format: If you choose to participate in a blog interview, you will receive an emailed set of ten interview questions via Word document and/or Google Drive, allowing you to write out your answers at your convenience. You'll have the flexibility to respond in detail, reflecting on your experiences and insights.
  • Duration: Participants can take their time to craft thoughtful responses, with no time constraints.
  • Submission: Once you've completed your written responses, simply return the document to me, Emily Fournier, via email at emilyfournier@ibdconnectinc.org
  • Review Process: Our team will review your written responses for clarity, relevance, and authenticity. We may offer feedback or request clarifications if needed before proceeding to publication.


Who Can Participate? 
Anyone affected by pediatric IBD, including patients, caregivers, family members, friends, healthcare professionals, advocates, and more, is encouraged to participate in our Blog Collaborations Program. At IBD Connect, we are committed to showcasing the diverse range of experiences surrounding IBD, recognizing that each story holds valuable insights into how this condition impacts individuals, families, and communities. We believe that true understanding and awareness can only be achieved through a rich tapestry of submissions from a multitude of voices within the IBD community. Therefore, we will reiterate that anyone affected by pediatric IBD is welcome to participate. 

Nondiscrimination Clause:
IBD Connect Inc. is dedicated to ensuring equal opportunity for all participants in our Blog Collaborations Program. We pledge to provide access to our program and its benefits without regard to age, race, color, religion, sex, national origin, disability, or any other protected status, as outlined by relevant federal, state, and local regulations. Our commitment extends to all aspects of our program, including the selection process for guest blog posts and interviewees. Discrimination has no place in our organization's operations.

The Purpose Behind the Program
As many of you know, IBD Connect Inc. is a 501(c)(3) nonprofit organization with a mission to support, engage, and empower pediatric inflammatory bowel disease (IBD) patients and their families. Our comprehensive programs and educational resources are specifically designed to do one or more of the following: support IBD families in need, engage IBD families in building a strong community, or empower IBD families to make a difference in the lives of other families in need. ​​We firmly believe that our Blog Collaborations Program is particularly aligned with our mission to empower IBD families. Participating in this program can imbue individuals with a profound sense of empowerment, knowing that their story has the potential to provide comfort and guidance to others navigating similar circumstances. Furthermore, by sharing their experiences through this platform, participants may inspire and empower fellow patients and families to take action in some way (e.g. making dietary or lifestyle changes, becoming advocates for the IBD community, joining or starting a support group, etc.). 

Why Participate? How do I Participate?
As previously mentioned, sharing your story through our Blog Collaborations Program offers a powerful opportunity to fulfill our mission to empower families with IBD. By sharing your narrative, you have the chance to forge connections within the IBD community, illuminate the challenges and victories of living with IBD, and ignite feelings of hope and solidarity. Your willingness to share not only empowers you but also serves as a beacon of reassurance and comfort for others navigating similar journeys.
If you would like to participate in our Blog Collaborations Program by writing a guest blog post, please kindly review the guidelines for posts. These can be found above in this post or on the “Blog Collaborations Program” page under our “Resources” tab on our main website. When you are ready for submission, you can choose to upload your piece to our main website via the submission platform. You may also choose to email your piece directly to myself, Emily Fournier, at emilyfournier@ibdconnectinc.org. Please note that our team will review your work for clarity, relevance, authenticity, and adherence to our guidelines, and submission does not guarantee that your work will be published. Furthermore, we may offer feedback or request clarifications if needed before proceeding to publication. We will contact you via email if revisions are needed. If only minor grammatical corrections are necessary, we may choose to edit the piece for you. If this is the case, we will email you the corrected piece for your approval before publication. Once a publication date is set, we will inform you promptly via email. 
If you would like to participate in our Blog Collaborations Program via a written interview, please email your interest to myself, Emily Fournier, at emilyfournier@ibdconnectinc.org. Please include in your email the topic you would like your interview questions to focus on. Example topics that we have covered in previous interviews include:
  • Living with an ostomy
  • Parenting a child with IBD
  • Insights from pediatric gastroenterologist on IBD 
  • A behavior analyst's look on behavior therapy in pediatric IBD care
  • Growing up with IBD
  • A sibling’s perspective on pediatric IBD
Please note that even if a topic has been covered before, we're eager to hear your unique perspective—every voice is valued and welcomed. 


Questions or Concerns?
For any questions, concerns, or additional information about our Blog Collaborations Program, please don't hesitate to contact me, Emily Fournier, via email at emilyfournier@ibdconnectinc.org. I’m here to support you every step of the way. You may also view all of the information discussed above, as well as view the submission portal, on the “Blog Collaborations Program” page under our “Resources” tab on our main website. 

In conclusion, the launch of our Blog Collaborations Program marks an exciting milestone in our ongoing efforts to support, engage, and empower the IBD community. We believe that every story shared has the power to uplift, educate, and inspire, and we're honored to provide a platform for these narratives to be heard. As we embark on this journey together, we invite you to seize this opportunity to share your journey, your insights, and your experiences with the world. Whether through a guest blog post or a written interview, your voice matters, and your story has the potential to make a profound impact on others facing similar challenges. We extend our heartfelt gratitude to each and every participant who chooses to join us in this endeavor. 
For those ready to participate, please refer to the guidelines provided and feel free to reach out if you have any questions or need assistance. We look forward to the incredible stories that await us! As always, stay strong IBD Warriors families! 
IBD Connect's Main Website
IBD Connect's Blog Collaborations Program Information
Email Emily
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<![CDATA[IBD Perspectives: From Caretaker to Patient]]>Wed, 01 May 2024 04:00:00 GMThttp://ibdconnectinc.org/blog/ibd-perspectives-from-caretaker-to-patient
For our committed IBD Connect blog readers, you’ll recognize this isn’t written by our blog author, Emily. My name is Jaimee, I’m a board member for IBD Connect, and I am your guest author for the next two months! When I was 28 years old, I was diagnosed with Crohn’s Disease. Throughout my journey, there have been two topics that fully and utterly define my relationship with my illness. The first, and perhaps the most life-changing, is what I’ll be discussing in this post. 

I grew up the second oldest of 4, with my younger sister (and baby of the family) being diagnosed with Crohn’s Disease at the age of 4. Being nine years older, I was immediately thrown into a caretaker role. I felt protective as an older sister, and I spent most of my late teens and early 20’s worried about what my sister’s life had in store for her. Would she be able to partake in sports in high school, or would her fatigue be too much? Would she be able to live at college, or would it be too difficult with her dietary restrictions? Will she have trouble making friends? Will they judge her? Will she be happy?

I chose to go to college only an hour from home so that I had easy access to my sister if she needed me. She would often ask that I accompany her to procedures, and I never wanted to let her down by being too far away. I would drive from school and meet her and my mom at the hospital, and I would lay with her while she got her IV put in. I would watch them wheel back my young sister all alone, and I would sit in the waiting room with my mom as she cried. We would wait, time and time again, to hear the outcome of yet another surgery or colonoscopy. 

While many caretakers understand the reeling thoughts we have about our loved ones with an illness that we cannot control, at the end of the day, it is not our bodies being affected. I know I speak for many when I say we wish we could take it from and instill it in us instead of them. That, I found, was one of the hardest parts of being a caretaker. You truly feel the impact of the illness, but the illness is not yours.

As my sister got older and her illness seemed to stabilize a bit, I felt more comfortable refocusing my efforts on my own life. I moved to New York City in 2015 after completing graduate school, and I could not have fallen more in love with a city. I loved the hustle and bustle and being in the heart of Manhattan. I immediately felt at home. I watched from afar as my sister went off to college and started her own journey to becoming a nurse. It finally felt like we, as a family, may have some years of peace in our tumultuous relationship with IBD. 

Fast forward to 2018, shortly before my 29th birthday. As I was gearing up for summer, symptoms I knew all too well from my sister slowly started becoming my own. I chalked it up to IBS, to anxiety from work, to anything else I could think of. I told myself, “don’t stress about it, it will go away. It will subside. Don’t panic. Don’t tell your friends. Don’t tell your doctor. And most importantly, don’t tell mom.”

This went on for a couple of months, and both the symptoms and fears began to intensify. I finally reached out to my doctor, and he referred me to a GI. At my first appointment, I explained my symptoms, to which I was asked “does anyone in your family have IBD?”. Not shockingly, he scheduled a colonoscopy immediately. Within 2 weeks, I had my very own Crohn’s Disease diagnosis. I will never forget the phone call to my mom, outside of NYU Langone in NYC. “I have Crohn’s.” She simply cried.

Here I was, in the happiest stage of my life, dealing with the illness I took care of for so long. The illness I wished I could take from my sister was mine.

Most people connected to IBD experience one or the other: caretaker or patient. It’s not lost on me that I am in a very rare position; therefore, my goal with this post is to shed some light for both parties. Both sides are often misunderstood, so this is my attempt to explain either side of the coin. 

To caretakers, from patients:
  • Our illness is all-consuming. We never stop thinking about it. It infiltrates every decision we make, every place we go, every plan we agree to. It, in itself, is utterly exhausting. 
  • We don’t always want to talk about it. Sometimes, hearing a caretaker say “I’m here if you want to talk” is all we need. We don’t actually want to discuss it. This stems from a few different reasons, but my personal reasons are 1) I think about it all the time, I absolutely don’t want to talk about it as well and 2) what’s the point? My answer will likely be “I don’t feel great, and I don’t know why, and no, there is nothing you can do.”
  • This isn’t about you (this one stings, but it’s true). It is not our responsibility to make caretakers feel better, so please don’t put that on us. If we aren’t talking about how we’re feeling, it is not a reflection of you (refer to bullets 1 and 2).
    • There is inherent guilt that comes with telling loved ones about our illness, especially caretakers. Hearing about the ways in which you have adjusted your life for us is not helpful. 

To patients, from caretakers:
  • We feel helpless, and it is isolating. We cannot fix you, and that fact in itself is incredibly painful to face.
  • We worry about you more than we worry about ourselves. Most of our decisions we make are with you in mind, and sometimes we just need to know you recognize that. We want you to open up to us and share the good, the bad, and the ugly of your experience. Even if we can’t fix it, we can be with you in that moment. 
  • Living a life engulfed in an illness we don’t have is incredibly confusing and scary. Your illness is ours too, even though we can’t claim it. It’s all we think about.

The hardest part of the transition from caretaker to patient, for me, is that many of these truths are in conflict with one another. It took me a while to realize: that is okay. Multiple things can be true at the same time. One doesn’t negate the other; all feelings are valid and true. 

My advice for anyone struggling in either of these roles is to discuss with a third party; do not rely on the caretaker or the patient to be the soundboard for your emotions. Both sides are fighting their own battle, enduring their own journey. We are a community figuring this out together, and there will be missteps. Be kind and gentle to each other, and know that we are all trying to support and empower one another through this life sentence. 

​-Jaimee Doucette
IBD Connect Main Website
IBD Connect Support Groups
Emily's Email
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<![CDATA[Lean on Me: The Power of Support for Families Living with Pediatric IBD]]>Mon, 01 Apr 2024 04:00:00 GMThttp://ibdconnectinc.org/blog/lean-on-me-the-power-of-support-for-families-living-with-pediatric-ibd
Caring for a child with inflammatory bowel disease (IBD) can be challenging. Upon diagnosis, your family is suddenly thrust into a world of medical appointments, treatment plans, and the constant uncertainty of navigating a chronic illness. In current research, there is a heavy focus on the many ways in which an IBD diagnosis impacts a pediatric patient. There are studies demonstrating IBD’s potential impact on the patient’s body, emotional and mental well-being, personal relationships and friendships, education, hobbies and activities, exercise, and a host of other facets of a patient’s life. One area that is perhaps under-researched at this time is the impact that a child’s IBD diagnosis has on the family. A study published in Frontline Gastroenterology supports this hypothesis, reporting that “ [IBD] has a major impact on different aspects of life…, but functioning in the home environment is under-reported in literature” (Paulides, et al., 2022). This is unfortunate because research has demonstrated that a flourishing family life can enhance an IBD patient’s self-efficacy, increase positive coping strategies, and reduce negative psychological states (Wu et al., 2022). The same study reports that a healthy home environment also has a potential impact on optimizing prognosis for a child with IBD (Wu et al., 2022). This is incredible! A healthy family dynamic is not only a benefit to the entire family, but is also a protective factor for the mental and physical health status of the pediatric IBD patient. We want strong children. We want strong families. We know that a child’s IBD diagnosis has the potential to impact the family dynamic. How do we ensure a strong, nourishing home life? There are several ways to foster a healthy family dynamic within the home of a pediatric IBD patient, but this blog post will explore just one of those ways: building a strong family support network. We will discuss ways that you can start building your family’s own unique, strong support system, as well as the vast potential benefits that having family support can bring to your home.

Potential Ways to Build a Strong Family Support Network

Listed below are several ways that you can start building your family’s own unique support system. You might notice the most benefit to your family when a variety of different suggestions are utilized. If you can think of any other ways to build a strong family support network, please feel free to mention them in the comments!

  • Join local in-person support groups: Joining a local, in-person support group is one of the best ways to build a strong, healthy support network for your family. You can research local support groups that are specifically tailored to families affected by pediatric IBD. If you are having trouble locating this type of support group, broaden your search criteria to include support groups for families affected by chronic disease. If your child is older and is comfortable with attending a support group alone, you may also consider searching for support groups that cater to the individual diagnosed with IBD or chronic disease. Although this type of support group does not necessarily focus specifically on healthy family dynamics and building family support systems, there may still be opportunities to connect with other families and build community. For instance, your child may develop a friendship with another child within the group, leading to instances in which your families meet. You may also be able to connect with a parent during a pick-up or drop-off time. No matter the type of local support group you have in your area, there will be some windows of opportunity to connect with other families and build a strong support system! Often times, the trouble is taking the first step in attending a group. The potential benefits of joining a group, however, far outweigh the potential risks in current evidence-based literature. The relationships formed within a local support group have the potential to directly impact your daily life. Imagine a group of individuals you can turn to for questions, advice, or emotional support. Imagine families who are willing and able to drop meals off to your home when your child is experiencing a medical crisis. Imagine spending quality time with families who just “get it.” Imagine your children who do not have an IBD diagnosis having the ability to socialize with other siblings of children with IBD. The benefits to the entire family dynamic are endless. If you are local (Worcester County, MA), you can click the link at the bottom of this post to learn more about IBD Connect’s In-Person Family Support Group. We also have another In-Person Family Support Group that will be launching this month in Bangor, Maine!
 
  • Utilize online communities or virtual support groups: Although the benefits of joining a local, in-person support group are vast, depending on your location, this may be incredibly challenging. If this is the situation you find your family in, consider utilizing an online community or attending a virtual support group. Websites, online forums, and social media groups provide platforms for sharing experiences, asking questions, receiving support, and offering encouragement from the comfort of your own home. Similarly, virtual support groups can also provide a safe-space to express your thoughts, with the added benefit of “face-to-face” communication. You may be surprised at the type of support you can glean from (and offer to) an online community! IBD Connect has several virtual support groups, a virtual family support group, a virtual caregiver’s support group, and a virtual young adult (18-30) support group. Click the link at the bottom of this post to learn more!
 
  • Attend pediatric IBD events, workshops, or educational webinars: Depending on your location, you may have the opportunity to participate in pediatric IBD-related events, workshops, or conferences in your area. These gatherings offer opportunities to connect with other families, healthcare professionals, and experts in the field, fostering supportive relationships and providing access to valuable resources. If these types of workshops are not available in your location, search for free online educational webinars, such as the resources provided by the Crohn’s and Colitis Foundation. The more you engage in the IBD community, the more connections you will find!
 
  • Choose the right healthcare providers: A strong support network for your family includes healthcare providers that are a good fit for your family. When choosing a provider for your child, you may want to consider a provider’s communication style, treatment approach, education, board certification, and hospital affiliation, in addition to patient reviews and feedback. Try to build a strong relationship with all the members of your child’s healthcare team, including your child’s primary care provider, pediatric gastroenterologist, nurses, dietitians, mental health professionals, etc. Establishing open communication and trust with your child’s healthcare team can provide invaluable support to not only your child, but your family as a whole.
 
  • Reach out to schools and/or community: Support for your family can come in many different ways. You may decide to educate your child’s teachers, school personnel, and/or classmates about pediatric IBD to foster understanding and support within the school community. There are many different support systems that your child’s place of education can initiate for your child. For instance, if your child is attending a public school, a 504 plan can provide an avenue for certain accommodations to be made to ensure that your child is receiving the same quality of education as other students. For more information about what a 504 plan is and how to initiate one for your child, you can visit the link at the bottom of the page to view a previous blog post on this topic. You may also consider contacting the necessary individuals within your school or community setting to form your own school or community support group or network for families affected by chronic illnesses like pediatric IBD.
 
  • Share your story: If your family is comfortable with this, you may consider sharing your family’s journey with pediatric IBD openly and honestly with friends, family members, or even online. By raising awareness and destigmatizing the condition, you may find additional sources of support or understanding within your social circle. You may choose to involve local extended family members or friends in your child’s care and treatment journey by keeping them informed about pediatric IBD and encouraging their support and involvement. These individuals can play meaningful roles in providing emotional support and practical assistance, but if they are unaware of the ways in which your family is struggling, it may be difficult for them to provide this tangible help. 
 
  • Seek professional counseling or therapy: If you feel as though this is necessary or may be beneficial to your family, you may also consider seeking professional family counseling or therapy to address emotional challenges, communication issues, and stress management related to pediatric IBD. A qualified therapist can provide support and guidance tailored to your family’s unique needs and circumstances. As mentioned previously, support can come in several different ways! You may be surprised with the type of support you can receive from this type of care.
 
  • Participate in research studies: This one may seem a little unusual, but you may decide to participate in pediatric IBD research studies or clinical trials as a family. Obviously, this is a decision that every family must make on their own, taking into consideration potential risks and benefits to involvement in studies on a case-by-case basis. If this is something that your family chooses to participate in, your family may gain access to cutting-edge treatments and interventions and become part of a larger community dedicated to advancing the understanding and management of pediatric IBD.

Potential Benefits of a Strong Support Network

  • Emotional Support: A strong family support network is of enormous benefit to a family’s emotional health. A support group, for instance, provides a safe and empathetic space for parents and caregivers to share experiences, fears, and frustrations related to pediatric IBD. A family support group also offers the opportunity for children with IBD, as well as their siblings, to connect with one another and offer validation, comfort, and emotional support. Additionally, if your child is going through a challenging time medically, family and friends can offer emotional support in the form of meal deliveries, transportation assistance, or help with household chores to alleviate some of the burdens on the family. A strong family support system can provide emotional support to a family in a number of different ways!
 
  • Information and Education: Families with pediatric IBD can benefit from access to the latest accurate information and educational resources about the condition. A strong family support system encompassing support groups, online forums, educational webinars, and trusted healthcare providers can provide valuable insights, tips, and resources for the management of pediatric IBD. The bigger your support system is, the more access you will have to easily accessible and potentially beneficial information about pediatric IBD!
 
  • Practical Advice or Tips: This potential benefit to a strong family support system is very closely related to the former benefit discussed. When your family has a strong network of other families affected by IBD, it becomes easier to tackle the day-to-day hurdles that come with the condition. While educating yourself on topics such as the various medication classes for IBD treatment or the latest research developments is undoubtedly valuable, gaining insights from other families can be equally beneficial. Questions like "How did you manage to help your child swallow pills effectively?" or "What steps did you take to establish a 504 plan for your child?" or even "How do you navigate dining out with a specific dietary restriction?" can be addressed more comprehensively with the collective wisdom and experiences of fellow families in similar situations.
 
  • Reduced Feelings of Isolation: Living with pediatric IBD can be isolating for each of the members of your family if your family does not have a strong support network in place. Participating in family support groups, educational webinars, or research studies can help alleviate feelings of isolation by connecting with other families who understand and empathize with your situation. Even if you aren’t connecting with other pediatric IBD families on a regular basis, connecting with and gaining support from family members or friends who are well-informed of your situation can still help to reduce feelings of isolation!
 
  • Increased Coping Skills: If your family has a strong support network, you may find that overtime, whether through an in-person or virtual support group, family therapy, or some other avenue, your family is learning to manage the stress and uncertainty of pediatric IBD more effectively. Learning from others and receiving encouragement on a regular basis can build resilience and strengthen coping skills over time!
 
  • Advocacy Opportunities: Having a strong family support network can provide you and your family with opportunities for advocacy. Many local support groups host events or fundraisers that can serve as a platform for advocacy and collective action to raise awareness about pediatric IBD, advocate for improved healthcare services, and support research efforts to find better treatments and ultimately a cure for IBD. Other opportunities for advocacy arise when discussing your child’s pediatric IBD with your child’s school or community. As a parent or guardian of a child with pediatric IBD, you have opportunities to model advocacy to your children in your attempts to build a strong family support network.  
 
  • Sense of Empowerment: Often times, a strong family support network can foster a sense of empowerment for families affected by pediatric IBD. Knowing that your family is not alone in your journey and that there is a community of support behind you can provide your family with the strength and motivation to face the challenges of pediatric IBD with resilience and hope. Often times, a sense of empowerment can inspire families to help other, less-experienced families affected by pediatric IBD. That is the beauty of community involvement and strong support networks!
 
Going forward, more research should be conducted on the many ways that a child’s IBD diagnosis impacts functioning in the home environment. However, we do understand that there are long-term benefits to fostering a healthy family dynamic within a home affected by pediatric IBD. Remember, a functioning family can have a potential positive impact on the mental and physical well-being of your IBD Warrior, as well as vast benefits for the family as a whole (Wu et al., 2022). Creating a strong support network for your family is an incredibly beneficial way to encourage healthy family dynamics within your home, and there are several different ways you can go about doing so. As we wrap up, please take note that this page is not intended to be a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor or healthcare team. Additionally, please note that this page cannot be a substitution or a replacement for the advice of a licensed therapist. If you feel as though your family may need professional support, please seek out the counsel of a licensed professional that specializes in relationships and/or family dynamics. Remember, if you would like to learn more about IBD Connect’s in-person or virtual support groups, you can use the link at the bottom of this post to gather more information. To attend a group meeting, keep an eye on our website or social media platforms for in-person meeting details and Zoom registration links. You can also feel free to contact either myself or another member of the IBD Connect team via email or website for any questions or concerns. As always, stay strong IBD Warrior families!

References

Paulides, E., Cornelissen, D., de Vries, A. C., & van der Woude, C. J. (2021). Inflammatory bowel disease negatively impacts household and family life. Frontline Gastroenterology13(5), 402–408. https://doi.org/10.1136/flgastro-2021-102027

​Wu, Q., Zhu, P., Liu, X., Chen, C., Ji, Q., & Gu, Q. (2022). The impact of family function on mental health status in patient with inflammatory bowel disease: The mediating role of self-esteem. 
Frontiers in Psychiatry13. https://doi.org/10.3389/fpsyt.2022.1007318
IBD Connect's Main Website
IBD Connect's Support Groups
Emily's Email
504 Plan Blog Post
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<![CDATA[Unlocking Support: Behavior Analysis and Pediatric IBD Care]]>Fri, 01 Mar 2024 05:00:00 GMThttp://ibdconnectinc.org/blog/unlocking-support-behavior-analysis-and-pediatric-ibd-care
Are you familiar with terms like behavior therapy, behavioral therapy, or applied behavior analysis (ABA)? What about the acronym BCBA? In this blog post, you're about to uncover how behavioral therapy, a field that may still be relatively unfamiliar to some, holds the potential to make a profound positive impact on the lives of pediatric IBD Warriors. Join me as I sit down with my husband, Bryce Fournier, a Board Certified Behavior Analyst (BCBA), to explore the transformative impact of behavior analysis on the landscape of IBD. Together, we'll uncover what behavior analysis entails, its potential influence on the realm of IBD, the burgeoning growth of the field, and how parents may be able to connect with a BCBA for invaluable assistance with behavioral challenges. Bryce has actually been a guest of IBD Connect’s blog previously, where he was able to share about his personal experience growing up with a sister diagnosed with Crohn’s disease at a young age. A link to this interview can be found at the bottom of this post. I'm thrilled to welcome him back to the blog to discuss the potential benefits of behavioral therapy for those with IBD. Please, enjoy the interview!

Can you please introduce yourself for those who have not read your previous interview? Tell us a little bit about yourself, your family, and your connection to IBD Connect! 

Sure. My name is Bryce, and I am the son of IBD Connect’s founder and director, Lisa Fournier. I am married to Emily, IBD Connect’s blog writer and media director. Currently, I am a behavior analyst and work in the public school system supporting students with Autism and other behavioral needs. In my personal life, I enjoy working out, playing with my fifteen month-old son, and going on walks with my family.

You mentioned that you were a behavior analyst. What is behavior analysis? Can you please tell us a little bit more about what you do? What does your job entail?

Absolutely. Behavior analysis is the applied field of study that uses research-based, behavioral strategies, including principles of reinforcement, to increase adaptive and prosocial behaviors and decrease challenging and interfering behaviors. Behavior analysts need a masters or doctoral degree and must pass an exam to be board certified in order to practice. A behavior analyst can work in a variety of different settings, including: clinics, group homes, hospitals, nursing homes, schools, and offices/places of work that need help with behavior and/or organization. Many behavior analysts opt to specialize in working with individuals with autism spectrum disorder, serving in diverse settings such as public schools, private schools, group homes, or directly within the patient’s home environment. Personally, I work in a public school, supporting the social, emotional, and behavioral needs of students on my caseload. I work primarily with students with autism and other developmental disorders but support students with other diagnoses who need behavioral support as well. In short, I try to increase prosocial behaviors (communication, following directions, sharing, completing classwork, etc.) and decrease problem behaviors (tantrums, biting, hitting, etc.) in students on my caseload. 

Is the behavior analysis field currently working with patients with IBD? How is behavior analysis relevant to IBD patients? Does this field work with other populations with chronic diseases and disorders?

The applied behavior analysis field is indirectly working with patients with IBD. As we know, anxiety and depression can often co-occur with IBD, especially when social aspects of a person’s life are affected by the disorder. The field of behavior analysis currently works with patients with anxiety and depression through different therapies, such as Cognitive Behavioral Therapy and Acceptance and Commitment Therapy. Additionally, a research study done in 2008 revealed that children and adolescents diagnosed with IBD are at a higher risk of displaying behavioral dysfunction, family dynamic issues, social problems, and nonadherence to treatment regimen than a healthy control group. Although the field of behavior analysis has not yet begun supporting IBD patients in a significant way, behavior analysis has been a successful treatment for behavior dysfunction, improving family dynamics, and nonadherence to treatment regimens within other populations (e.g. mental health needs, substance use, etc.), therefore behavioral therapy may be beneficial to a pediatric patient with IBD struggling in one of these domains. 

You mentioned that you work with the social, emotional, and behavioral needs of the children on your caseload. Can you please clarify how you do this? Do you feel that behavior analysis could help IBD patients in those domains? How so?

Absolutely I do. As previously discussed, the field is already adept at working with individuals diagnosed with anxiety and depression, conditions that often accompany chronic illnesses and affect a significant portion of the population. When addressing the social needs of my students, I prioritize the development of essential social skills, such as interpreting social cues and norms. Additionally, I provide guidance in emotional regulation and equip students with coping mechanisms for managing challenging emotions. Finally, in supporting behavioral needs, I help create an individualized treatment plan aimed at decreasing levels of challenging behaviors and teaching important skills. Applying these principles to pediatric patients with IBD, we can similarly focus on teaching social skills, particularly crucial for children who may miss out on social interactions due to hospitalizations and limited community engagement. Moreover, we can offer support for emotional and behavioral challenges faced by both children and their parents. Drawing from our experience in working with populations dealing with behavioral and family dysfunction, as well as those struggling with treatment adherence, we are well-equipped to assist patients with IBD and their families in navigating these complex dynamics.

Could you offer examples of specific applied behavioral interventions that have proven successful in supporting individuals you've worked with? How applicable are these interventions to patients with IBD and their families, and how adaptable are they across different age groups?

Of course! I've developed an intervention focused on teaching autistic clients how to swallow pills and manage medications by gradually introducing small mock pills. Success is reinforced with preferred items or activities, and the size of the pill is systematically increased over time. This approach has been successfully implemented with both young children and high-schoolers.
Moreover, I recently conducted a research study published in the Journal of Applied Behavior Analysis, which utilized a behavioral treatment package to promote moderate-intensity physical activity in adults. These interventions demonstrate remarkable adaptability across age groups and hold potential applicability for individuals with IBD. Given the importance of medication adherence and regular exercise within this population, these strategies could prove beneficial.

How important is parental involvement in implementing behavioral interventions for children? What strategies do you recommend for parents struggling with behavioral challenges with their children diagnosed with IBD?

As the primary implementers and monitors of behavioral interventions on a day-to-day basis, parents play a pivotal role in the effectiveness of the interventions I prescribe. I consistently observe the greatest strides in client progress when parents are actively engaged in implementing the behavioral strategies I establish. Although my advice should not be used in lieu of behavioral or medical treatment, for parents struggling with their children’s challenging behaviors due to some aspect of an IBD diagnosis, I would recommend using something called differential reinforcement to try to decrease challenging behaviors. Differential reinforcement has four key aspects that make it effective. Let’s take a look at an example using a hypothetical situation. In this hypothetical scenario, your child throws a tantrum whenever it is time to take his oral medication. First, you, as the parent, should identify the positive behavior you want to see. In this example, the positive behavior you would like to see is that your child swallows the medication. Second, you should identify the challenging behavior you do not want to see. In this case, that would be your child’s tantrum! Third, identify a reinforcer or reward for successful swallowing of the medication. If your child likes reading a certain book with you, eating a certain snack, or playing a certain game, this could be the reward your child will receive if the medication is swallowed. Anything your child likes and frequently enjoys could be used as a reinforcer. Fourth, and finally, identify the response for the negative behavior (i.e. the tantrum) that you will implement should your child not swallow the medication. This could be simply ignoring the tantrum while keeping the child safe, as well as continuing to present the medication demand intermittently until the child takes the medicine. In this hypothetical example, you, the parent, would communicate the potential reward for swallowing the medication to your child. If your child goes into tantrum behaviors, your response to this behavior would be to stay calm and keep your child safe while ignoring the tantrum. You would represent the mediation every minute or so until the child cooperates. Again, I have to mention that this is simply an example showing how differential reinforcement works and that this example is hypothetical and does not constitute behavioral advice. It should not replace therapy from a contracted BCBA or medical provider.

As children with IBD transition into young adulthood, how does behavior analysis continue to play a role in supporting their evolving needs and challenges?

As highlighted earlier, the field of behavior analysis is already highly adept at assisting various population groups grappling with anxiety and depression, two conditions that have the potential to arise as children with IBD transition into young adulthood. Moreover, employing behavioral strategies can facilitate the adoption of healthy habits and lifestyle adjustments crucial for effective treatment, including fostering habits like balanced nutrition and regular exercise. Furthermore, established therapeutic approaches like Cognitive Behavioral Therapy and Acceptance and Commitment Therapy have proven effective in supporting many young adults contending with anxiety and depression, offering promising avenues for managing the emotional complexities often associated with IBD.

How do you see the field of behavior analysis growing and expanding further into the treatment of patients with IBD? 

I envision the field expanding in several key areas. Firstly, we're witnessing a concerning rise in young children being diagnosed with IBD, yet we have only a limited understanding of the potential long-term impacts on their mental health. I believe there’s a need for tailored interventions that can effectively support these young patients. Therapies like cognitive behavioral therapy and acceptance and commitment therapy have the potential to adapt and better cater to the unique needs of IBD patients, offering targeted support for their mental well-being. Secondly, as mentioned previously, behavior analysis has the potential to help with medication adherence and the transitioning of the responsibility for treatment from parents to the children as children become adults themselves. Behavioral analysis can play a pivotal role in fostering autonomy! Finally, in my opinion, the field of behavior analysis has the potential to emerge as a valuable tool in addressing family dynamics impacted by IBD. 

Do you have any words of advice or hope for parents of children having difficulties coping with a new IBD diagnosis?


Yes, I do. First, know that you shouldn’t have to navigate a new IBD diagnosis in the family alone! IBD Connect offers support groups and resources to help navigate the stress and emotional turmoil that a new IBD diagnosis can bring. Second, if your child is having behavioral challenges, please understand that this is not unexpected. Remember that behavioral challenges are very changeable and can significantly improve over time, especially with appropriate treatment and as children mature. Third, the field of behavior analysis continues to expand, offering enhanced support for diverse populations, including those grappling with chronic illnesses like IBD. If you feel as though your child may benefit from a professional’s guidance, don’t be afraid to take the first step in getting help. Finally, by using simple reinforcement strategies and encouraging an overall healthy lifestyle that focuses on diet, exercise, time outdoors, social supports, and the treatment plan and guidance of your child’s medical team, parents can help their children mitigate many of the psychological effects that may come from an IBD diagnosis. 

Finally, how can parents seeking support for a child experiencing behavioral or mental health challenges find the assistance they need? 

Parents seeking support for a child experiencing behavioral or mental health challenges can benefit from consulting with a Board Certified Behavior Analyst (BCBA). A BCBA can provide evidence-based interventions rooted in cognitive-behavioral therapy (CBT) and acceptance and commitment therapy (ACT), tailored to the child's needs. Look online for a clinic or clinician specializing in these therapies, or talk with your child’s pediatrician. A clinician trained in CBT or ACT can offer guidance on implementing behavior management strategies, teaching coping skills, and fostering emotional regulation. Additionally, online resources such as reputable websites and forums, can offer valuable information and support. Many ABA providers have parents guides on their websites. 

Here’s one geared toward parents: https://www.attainaba.com/aba-blog-archives/beginners-guide-for-parents/

Here’s a resource for pill swallowing: https://www.massgeneral.org/children/autism/learning-how-to-swallow-a-pill

As we wrap up our interview with Bryce, I trust that this discussion has provided you with valuable insights into the rapidly evolving realm of applied behavior analysis and its potential to bring about positive change in the lives of pediatric IBD patients and their families. Bryce’s thoughtful, insightful answers truly showcase his passion for behavioral therapy and his willingness to help IBD patients and families. Thank you Bryce for an incredible interview! As a side note, Bryce's expertise in behavior analysis has significantly contributed to the growth and development of IBD Connect. Notably, his ideas and educational background played a pivotal role in shaping the structure of IBD Connect’s current twelve-week Healthy Breakfast Challenge. Before we conclude, I want to remind everyone that if you are looking for more information or would like to receive support, please feel free to contact me or another member of the IBD Connect team. My email is linked at the bottom of this page, and you can always contact us through our website as well. Additionally, even though today’s post was not clinically heavy, I still want to remind everyone not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. And as always, stay strong IBD Warriors/IBD Warrior parents!

IBD Connect Main Website
IBD Connect Support Groups
Bryce's Previous Interview
Emily's Email
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<![CDATA[Fitness, Nutrition, and IBD: One Patient's Personal Journey]]>Thu, 01 Feb 2024 05:00:00 GMThttp://ibdconnectinc.org/blog/fitness-nutrition-and-ibd-one-patients-personal-journey
Curious about the pivotal role that fitness and nutrition play in managing inflammatory bowel disease (IBD)? In IBD Connect’s first ever guest blog post, Bryan Whynot, an IBD patient and seasoned fitness professional, offers a deeply personal account of his transformative journey with autoimmune disease, shedding light on the profound impact of fitness and nutrition in his life. As a fitness director, NASM certified personal trainer, and nutrition coach with over a decade of industry experience, Bryan brings a wealth of insight to the table. By detailing two impactful experiences in his life, Bryan explores how prioritizing his overall health and wellness has positively impacted both his physical and mental wellbeing. Through poignant anecdotes and practical advice, Bryan extends a guiding hand to individuals navigating IBD or autoimmune conditions, offering invaluable tips for embracing fitness and nutrition as powerful tools in the fight against chronic illness.

Before we dive into the content, please note that Bryan does offer general guidance for starting a journey with fitness and nutrition. Please note that his advice is meant to complement, not substitute, the guidance of you or your child’s healthcare provider and/or registered dietician. It is essential to consult either you or your child’s healthcare provider and/or registered dietician before making any significant dietary changes or changes in physical activity level. IBD Connect does not offer official guidelines or recommendations for physical activity or diet. Let’s dive into the content!

My name is Bryan Whynot, and I have been an IBD patient for over 18 years. I was diagnosed with Ulcerative Colitis at age 8 and Rheumatoid Arthritis at age 16. Like everyone with IBD, I have had my ups and downs over the years so summarizing my journey sometimes feels impossible. I am 26 years old now, and I can honestly say this journey has been both a blessing and a curse. We all know the curses of diseases, but it isn’t all bad. The life lessons, personal bonds, and strength a disease can give you helps to shed light on a bigger picture that goes beyond the uncomfortable symptoms we face.

So, how on earth do I summarize 18 years of my life in one short passage. I honestly think I could write a novel at this point, but I want to focus on the thing that truly saved my butt through this journey and that is fitness and nutrition.

​From the ages of 8 to 15, I experienced the “ugly” side of the disease. I was unconfident, the overweight kid in class, shy, timid, scared, had bad acne, and over all so uncomfortable in my body that I exiled myself from my friends and school activities. I grew up playing sports, and I felt out of place on the team due to my disease. I felt different than every other kid. I never told any of my classmates about my diagnosis except one student who kept my “secret.” I was also struggling trying to find medication that worked for me. Overall, I would think of myself as gross, and it was very hard to pull myself out of that mindset.

That all flipped on its head when I went through my first major hospital stay the summer before my sophomore year in high school. Now, the next two stories that I am going to share are not meant to be my “war” stories. In other words, they shouldn’t serve as a reminder of the bad times, but a reminder of how strong adversities like this can make you if you let them.

I went into the hospital at 230 pounds. I couldn’t walk with how fluid-filled my legs were from the uncontrolled inflammation running through my body. I truly thought the worst. My doctors at the time couldn’t get my symptoms under control and every intervention we tried failed to help. Instead, my symptoms kept getting worse. My doctors had started talking about the potential of colon cancer, as well as the possibility of me having a life expectancy of 25. I thought this was the beginning of the end.

​Thankfully, that was far from the truth. I stayed 4 days with my mom in the hospital where I was pumped full of antibiotics and didn’t have the willpower to eat much. This resulted in me losing over 100 pounds in those 4 days. I walked out of the hospital at 115 pounds.

During my stay, I had the moment that flipped my mindset completely about my diseases. I shared the hospital room with a 5 year-old boy who was in a medically induced coma for my first 2 days. He was on the other side of the room behind the curtain. This didn’t mean anything to me at first because I was so caught up in my own situation. During the third day of my hospital stay, his mother peaked around the corner to say “hi” and politely asked us to not pay attention to her son while he needed to use the bathroom. She explained that he felt very self-conscious about how he looked. My mom and I understood completely and did just that. My curiosity was high though because I had been hearing conversations behind the curtain once the boy woke up from his medically-induced coma. So, I did what any teenage boy would do and went on my phone. I peeked up a little with my eyes as the boy walked by.

In that moment, life gave me the biggest slap across the face. My mom ended up doing the same thing as I did, and when the mom and boy went into the bathroom, I turned to my mom and said, “I am fine” in pure disbelief.

When I looked up from my phone, I saw half of this little boy’s face exposed to the bone, revealing his jaw and eye socket. These injuries were the result of a horrific bike accident. I was blown away at something that I had only seen in movies and knew immediately that I did not have anything to complain about with what I was going through. My heart fell to the floor hearing the boy cry about how he would never be beautiful and doctors explaining how they would need to do skin graphs on other parts of him to reconstruct his face. I will never forget this until the day I die for several reasons, the biggest reason being that I learned that there is always someone worse off and someone better off than you. You must be real with yourself and take your journey one step at a time.

I knew that at that moment I was going to turn my life around. My biggest insecurity growing up was my weight. After losing a significant amount of weight at the hospital, it was the perfect time to start my fitness journey.

I joined the local gym with my friend and started working out to build myself back up. I learned about fitness/nutrition while working on my own body. It was the best medicine I have ever given myself. The stronger I got physically, the more self-confidence I had, and my symptoms drastically improved. I started to look in the mirror and not dislike who I saw. I became more social and felt good about myself for the first time. I went back to school and turned everyone’s head with my transformation. Within a year, I was 75 pounds heavier and in the best shape of my life.

I knew within that first year after my hospital stay that fitness and nutrition was now going to be a major part in my life. From that point on, I dedicated my life to learning everything I could about the industry. I started working at my friend’s gym, and I learned under him. I tried out different diets that would help grow muscle and get the results I wanted.

I haven’t looked back since. I have now worked in gyms for over a decade, and I’ve held every position other than owning my own gym. I hope to do that one day.

The relationship between IBD and diet lead me to earn my bachelor’s degree in nutrition health and wellness. I wanted to better understand the science behind the results I was seeing with my own body.

Towards the end of my college career, I went through my worst IBD flare-up, and almost made my predicted life expectancy of 25 come true. Six months before my 25th birthday, I experienced an 80-pound weight loss, lost 8 liters of blood, suffered from a moderate heart attack, dropped to 20% blood oxygen level, had an absence seizure, and experienced other symptoms due to multiple mouth and stomach infections. This landed me in another multiple-day hospital stay with scopes, steroids, blood transfusions, and other medical interventions to keep me stable. During this stay, doctors asked me how I got to this point.

I explained that all of this happened while I was still managing a gym and earning my degree. I couldn’t stop because of this so I did my own physical therapy and explained what I ate every day for a month to keep myself going. I explained my logic with my years of knowledge in nutrition and fitness training. After I finished my explanation, the surgeons and doctors were left speechless for a few moments. Then, the head surgeon looked at me and said “It’s a miracle you are telling us this story. You walked a very dangerous road that most people wouldn’t have survived. The only reason you are alive right now is because of your nutrition and training habits. You should not have been able to do that.”

I got discharged without needing emergency surgery and have been on Remicade infusions for the past 2 years to manage my symptoms and get my life back on track.

Today, I am a Fitness Professional working as a Fitness Director, Personal Trainer, and Nutrition Coach. I have created my own brand in the industry. I have modeled for major brands such as Adidas, Footlocker, Barstool, Hollister, and Abercrombie & Fitch. With over a decade of fitness experience in 7 different gyms, I have truly gained back all the health I previously lost.

I am not special, and everyone reading this has a story like mine. Everyone has their hardship and scars, as well as the baggage that comes with them. Everyone has the choice to have those things make you stronger or weaker. I can tell you that giving yourself the fuel and strength to fight back makes it so much easier.

IBD is not going anywhere for me. I know this isn’t my full story and know that there are more hurdles to come, but I now know that if I care what I put into my body and give it the ability to be strong, I can overcome the future. The same is true for anyone who reads this.

My future plans are to continue my work in gyms and either own my gym or become a traveling trainer in the next 5 years. I also plan to continue to work with IBD Connect and other IBD foundations to show kids and adults how much fitness and nutrition plays a major role in fighting these conditions and keeping symptoms at bay.

My advice to anyone just getting into fitness is start slow cardio and resistance training. Work out with a professional if possible or join group classes that are more affordable. YouTube is also a great resource and how I got started learning. Watching channels like NASM, Body Building.com, and channels created by credentialed fitness professionals can give you a great starting foundation for growth and learning in this area. Like everything else, you need to find your own lane, but with all these resources, it is much easier than you think.

Just start, listen to your body, and keep an open mind. Nutrition is the same. Nutrition can be a little more difficult, but the simple way to look at it is the more natural the better. Fruits, vegetables, whole grains, and lean white meats have worked well for me. Limiting dairy, high fats and sugars has made a big difference for me too. It may take a little time but there is a diet and exercise plan for everyone.

This concludes IBD Connect’s first ever guest blog post with fitness professional Bryan Whynot. Clearly, fitness and nutrition have played a pivotal role in Bryan’s life. His experiences will hopefully impact and inspire other IBD Warriors seeking to begin their own personal journey with health and wellbeing. Admirably, Bryan has established The Whynot Lifestyle, an athletic lifestyle clothing brand dedicated to promoting active, healthy living as a means to combat chronic disease. For more information about Bryan and his clothing brand, you can visit his website, www.thewhynotlifestyle.com (link is below). Bryan is also active on Instagram @the.whynot.lifestyle. If you would like additional resources on nutrition and diet, IBD Connect offers insightful blog posts on these topics. These posts are meant to serve as introductory guides to these topics. It’s essential to note that these resources provide general guidance, and for personalized advice, it's advisable to consult with your healthcare provider or a registered dietitian. As Bryan suggested, seeking the guidance of a professional fitness instructor can also be beneficial on your wellness journey. If you would like to connect with other IBD families with experience in starting a health and wellbeing journey, IBD Connect offers several support groups, both in-person and virtual. Feel free to click the link below for more information. A huge “thank you” goes out to Bryan for sharing his personal story and impactful message about fitness and nutrition. On that note, stay strong IBD Warriors!
The Importance of a Healthy Diet for Children with IBD
Active Living: IBD and Exercise
IBD Connect Support Groups
The Whynot Lifestyle
Emily's Email
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<![CDATA[From the Frontlines: A Pediatric Gastroenterologist's Perspective on IBD]]>Mon, 01 Jan 2024 05:00:00 GMThttp://ibdconnectinc.org/blog/from-the-frontlines-a-pediatric-gastroenterologists-perspective-on-ibd
​Have you ever wished you could talk candidly with a pediatric gastroenterologist about their unique perspective on childhood IBD? Are you curious about the latest developments in pediatric IBD research or what the future may hold for IBD treatment? From a doctor’s perspective, what are some of the biggest challenges currently facing pediatric IBD patients and their families? In this blog post, Dr. Jay Fong, a board-certified pediatric gastroenterologist, is interviewed and asked these very questions. Dr. Fong has over fifteen years of experience in pediatric gastroenterology and currently practices at UMass Memorial Medical Center in Worcester, Massachusetts. Dr. Fong is also a member of IBD Connect’s Board of Directors and has been serving us in this capacity since the nonprofit’s formation in 2019. It was a privilege to be able to explore and discuss the evolving nature of pediatric IBD with Dr. Fong, and it is my hope that the insights and information discussed in this interview will be beneficial to you and your IBD Warrior!
 
Before we begin, please note that this page is not intended to be a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor or healthcare provider. The information provided in this post should not be used to diagnose and/or treat you, your child, or a loved one with IBD. If you have general questions, would like more information on this topic, or would like to connect with an IBD support group, please feel free to reach out to a member of the IBD Connect team, myself included, via the links at the bottom of this post. Now, let’s dive into the interview with Dr. Fong!
 
Can you please introduce yourself? Tell us a little bit about yourself, your family, and your connection to IBD Connect! 
My name is Jay Fong, and I am a pediatric gastroenterologist at UMass Memorial Medical Center in Worcester, MA. I am a husband and father of two boys who have lived in Massachusetts for at least 15 years now. My connection to IBD Connect was through my prior participation in the IBD Support group that started locally and preceded the current nonprofit we know and love, IBD Connect (but still continues to this day, thankfully!).
 
What was the driving force that motivated you to become a medical doctor? Why did you choose to specialize in pediatric gastroenterology?
The practice of medicine afforded me a way to apply my interest in human physiology and leverage that knowledge in a way to help families get to a better state of health, and pediatric GI was a vehicle in which to decipher so many different presentations of problems. It’s a problem-solving activity that constantly challenges our notions of wellness and access to health care systems.
 
Could you explain in layman's terms what inflammatory bowel disease (IBD) is? How common is IBD among children? Is the incidence of pediatric IBD rising?
IBD is a condition that is characterized by chronic inflammation of the gastrointestinal (GI) tract. In an individual diagnosed with IBD, the immune system triggers a process of ongoing and continuous inflammation, and this inflammation ultimately results in targeted damage to the GI tract. The prevalence of pediatric IBD in the United States is about 100-200 for every 100,000 children, and the incidence (unfortunately) appears to be rising.

Can you discuss the potential long-term implications of IBD on a child's growth, development, and overall quality of life? How do you address these concerns in your treatment approach?
IBD has the unfortunate outcome of severely impacting a child’s potential for growth and development, in the form of limiting what would have been a ‘normal’ adult height. IBD can lead to missed school days for doctor visits, treatments, and/or potential hospitalizations.  From a quality of life standpoint, a child’s ability to leave the home for socialization with friends and travel with families can be limited to the constant need for restroom access, which can also affect schooling as well.

From your viewpoint as a pediatric gastroenterologist, what are some of the biggest challenges currently faced by pediatric IBD patients and their families?
Currently, access to the most effective medications with minimal delays is one large hurdle, given that health insurances usually impose restrictions on requiring other medications be trialed first (“the fail-first approach”). This can lead to further worsening of symptoms and a delay in improving quality of life metrics.

How important is patient education and family involvement in managing and treating IBD, and what role can nonprofit organizations like IBD Connect play in this process?
Our profession sees a very powerful benefit to patients and families being educated in the journey of the chronic disease that is ‘IBD.’ Education can lead to personal empowerment and advocacy. Non-profit organizations like IBD Connect can certainly start to break down any stigmas that exist in the discussion of a GI-centric chronic illness like IBD, as well as direct families to resources that may not know they need. For the most part, families are appreciative of knowing that they are a part of a larger community.

What recent developments in the field of IBD research or treatment have caught your attention, and how do you foresee them impacting patient care?
IBD research appears to be headed towards an outcome of targeted precision medicine to better suit each patient and enable treatment teams to have a more effective way to keep symptoms in remission.  Eventually, medical therapies will take each patient through a tailor-made medical regimen to treat their IBD instead of relying on a ‘one-size-fits-all’ approach.

In your perspective, what are some of the pressing, unanswered questions in IBD research that necessitate further investigation, and how might addressing these gaps open up new avenues for advancements in patient care?
We still need to investigate further how our personal genetics interact with the micro-organisms that exist in our own digestive tracts along with our environment and advance our understanding of how that might influence a person’s development of IBD (or not).

How do you see the future of IBD treatment evolving?
I see and hope for IBD treatment to be more ‘portable’, and less uncomfortable, with more emphasis on oral therapies and potentially relying less on infusions or injections.
 
Finally, do you have any words of advice or hope for a parent of a child with IBD? What encouraging message could you share?
First of all, I would emphasize that every 10 years, there is appears to be many more therapeutic options to use than the ‘stone age’ when there was only a few basic medications and surgery. The hope for a cure is never without merit, given the incredible amount of knowledge unlocked by ongoing research. I would say that having children be involved in a support group absolutely helps them come to terms with IBD and start flourishing personally, and even professionally. Children thrive with the right support. When a child’s family actively helps their child navigate this journey, that child can develop courage in helping other children with a new diagnosis of IBD.
 
This concludes our interview with Dr. Jay Fong, a pediatric gastroenterologist and valued member of IBD Connect’s Board of Directors. Clearly, Dr. Fong’s extensive experience offers valuable insights into the challenges and prospects within the realm of pediatric IBD. The message of hope that Dr. Fong leaves us is palpable. Looking ahead, he envisions a future of precision medicine, providing personalized approaches to keep symptoms in remission. He also anticipates a shift towards more convenient and comfortable IBD treatments. It is my hope that Dr. Fong’s answers to the questions in this interview provide some comfort and hope as you navigate your own family’s unique IBD journey. If you are looking for more information or would like to receive support, please feel free to contact me or another member of the IBD Connect team. My email is linked at the bottom of this page. Before we conclude, I want to extend IBD Connect’s deepest gratitude to Dr. Fong. His eagerness to participate in this interview speaks volumes about the heart he has for supporting our pediatric IBD patients and their loved ones. Thank you, Dr. Fong! And as always, stay strong IBD Warrior families!
IBD Connect Main Website
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Emily's Email
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<![CDATA[Gifts of Care: A Thoughtful Holiday Guide for IBD Warriors]]>Fri, 01 Dec 2023 05:00:00 GMThttp://ibdconnectinc.org/blog/gifts-of-care-a-thoughtful-holiday-guide-for-ibd-warriors
The holiday season is a time of joy, celebration, and the exchange of meaningful gifts between loved ones. Receiving thoughtful and practical gifts can make a significant impact on overall well-being for an individual living with inflammatory bowel disease (IBD). As a parent to a child with IBD, you may find yourself contemplating gift ideas to bring comfort and cheer to your little one. Maybe you already know the perfect gift to give your child this year, but your family members or friends are eagerly seeking gift suggestions. In the following holiday gift guide, I’ve curated a selection of ideas that prioritize comfort, support, joy, and health for individuals living with IBD. Whether you are a parent, relative, friend, loved one, or a patient seeking self-care treats this holiday season, this gift guide will help you explore thoughtful options that bring warmth and cheer.
 
Although the following information is not clinically heavy, before we begin please note that this page is not intended to be a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor or healthcare provider. The information provided in this post should not be used to diagnose and/or treat you, your child, or a loved one with IBD. If you have general questions, would like more information on IBD, or would like to connect with an IBD support group, please feel free to reach out to a member of the IBD Connect team, myself included, via the links at the bottom of this post. Now, let’s dive into those gift ideas!
 
This guide is thoughtfully organized into distinct categories for your convenience. However, it's worth noting that many of the gift ideas could be placed in more than one category. To fully embrace the richness of this gift guide, we encourage you to explore each section thoroughly and discover all the thoughtful options awaiting your consideration! Additionally, this gift guide encompasses all ages. There are gift ideas that are appropriate for children, adolescents, and adults living with IBD. Please use your discretion when purchasing a gift for your IBD Warrior!
 
Practical Gift Ideas:
 
1) IV Hoodie: The iVHOODIE (https://ivhoodies.com/) is perfect for staying cozy during an infusion! Each hoodie features a zipper that runs the length of each arm to allow for easy access for IV placement or a lab draw. These hoodies allow your IBD Warrior to feel both confident and comfortable in the chilly hospital environment. They come in several different sizes and two different colors. The best part? They were created by one of our own IBD Warriors, Ella Shamash!
2) Squatty Potty: The Squatty Potty is a stool that your IBD Warrior can use while going number two! It helps properly position your legs to reduce strain and improve bowel health. While not in use, it fits  perfectly around your toilet to save space. The Squatty Potty is cost-effective, and there are multiple different styles and designs to choose from. This product gets bonus points for being easy to clean!
3) Heating Pads (Or Plush Animals!): A cozy heating pad can provide soothing relief from abdominal and back pain during flare-ups. Opt for high-quality, washable fabrics for comfort and practicality. For younger children, there are several different brands that create microwavable plush animals that function as heating pads!
4) Reusable Hot-and-Cold Packs: Versatile and practical, these packs can provide relief for various symptoms. Whether its heated for muscle relaxation or a cold pack for inflammation, they offer adaptable comfort for different situations. They are great for travel too!
5) Poo-Pourri: This before-you-go spray works wonders to help eliminate odor. Spray 3-5 sprays in the toilet bowl before you go to create a barrier that traps the odor below the water’s surface. This is great for home use and travel! (https://pourri.com/)
6) Pill Box: Help your IBD Warrior stay organized during the week with their own pill box! For younger children, there are pillboxes with different themes and characters. Make it fun!  
7) Food Journal: A food journal, or a food tracker, is a great way for your IBD Warrior to ensure a well-balanced diet or to maintain adherence to a specific diet prescribed by a healthcare provider or registered dietician. Logging foods in a food journal may also help identify trigger foods causing unwanted symptoms. Some journals have a section that allows the user to track water intake as well.
8) Books: Books can help educate and inspire. You may consider gifting your IBD Warrior an educational book written by a medical professional, an inspiring story written by an IBD patient, or an informative book regarding a specific diet plan your IBD Warrior is trying. The possibilities are endless!
9) Travel Bag and/or Emergency Kit: A new travel bag or emergency kit is the perfect gift for an IBD Warrior. If you choose to purchase a bag, you can fill it with hand sanitizer, wipes, Poo-Pourri, toilet paper, disposable bags, a pill box, and/or anything else your IBD Warrior may find useful in an emergency situation on-the-go.
10) Heated Toilet Seat With Lights: This is a very practical gift, especially for those moments where you have to go in the middle of the night! There are several different options and styles to choose from on Amazon alone.
 
Fun Gift Ideas:
 
1) Kindle or Audiobook Subscription: Reading or listening to books can be a wonderful distraction during challenging times (hospital visits, flare-ups, surgery recovery, etc.). Provide access to a vast library with a Kindle or audiobook subscription to keep the mind engaged and entertained.
2) Streaming Services Subscriptions (Netflix, Hulu, Disney Plus, etc.): Subscriptions to these services can provide a means of distraction during times of rest and recovery. Make sure to factor in age considerations!
3) Fun Toilet Paper Holder: A quick search on Google or Amazon yields a plethora of different fun, silly toilet paper holder and storage options. There are dinosaurs, cats, sheep, cacti, giraffes, clouds, and food-shaped toilet paper holders. There are bears and Rubik cube shaped toilet paper holders. There are so many options! While kids will love the characters, animals, and fun objects, adults may enjoy some of the more aesthetically pleasing or practical toilet paper holders. There are toilet paper holders that include a little compartment above the paper for storage! There are some toilet paper storage options that look like a tic-tac-toe board. Do some research and find one that your IBD Warrior will love.
4) Poop/Colon/Ostomy Plush Toys: Younger IBD Warriors will love plush toys that are shaped like poop or a colon! If your little IBD Warrior has an ostomy, there are even stuffed animals and dolls that have ostomies.
5) Anything Featuring the Poop Emoji: Plush toys, blankets, stickers, key chains, water bottles, etc. No explanation needed!
6) Fun IBD Tee Shirts: A quick Amazon search shows several different tee shirts options that showcase IBD-related humor. If you know an IBD Warrior with a good sense of humor, this may be the perfect gift.
7) Coloring Books/Puzzle Books: Coloring books or puzzle books are a great way to pass the time at the hospital, relax after a long day, or practice selfcare. These are a great gift for children and adults! Many adult coloring books are geared primarily to help with relaxation.
8) Interactive Story Books: Interactive story books can spark your IBD Warrior’s imagination, engage their mind, distract from challenges, or help them to relax. Look for books with textures, sounds, or interactive elements to make reading a delightful experience. You can also opt for something that involves screen-free technology, such as one of LeapFrog’s Learn to Read Systems (https://www.leapfrog.com/en-us/products/reading-family) or the Toniebox (https://us.tonies.com/pages/bundle?gad_source=1&gclid=Cj0KCQiAgqGrBhDtARIsAM5s0_lJxyVhCnTr25Anf8iNeytdqhAWNdOEhk3XdcHZTqQ8hiW02HLcqLwaAgc2EALw_wcB)
 
Gifts that Prioritize Health and Wellness:
 
1) High-Quality Water Bottle: Hydration is crucial for individuals living with IBD. Choose a durable, insulated water bottle to encourage regular water intake, helping to support overall health and well-being. For younger IBD Warriors, choose a water bottle with their favorite character, animal, movie, etc. displayed.
2) Customized Meal-Delivery Service: Managing a specific diet and/or eating healthy is crucial for those living with IBD. Gift a subscription to a meal delivery service that accommodates dietary restrictions, making it easier for your loved one to enjoy delicious and IBD-friendly meals. Taking the stress out of meal preparation can be a game-changer for individuals with IBD.
3) Cookbooks: Know an adolescent or adult IBD Warrior that loves to cook or is following a specific diet plan? Give them the gift of a cookbook specific to their diet plan!
4) Gym Membership/Classes: This is the perfect gift for the IBD Warrior who is looking to grow in their health and wellness journey.
5) Gentle Exercise Equipment: Encourage well-being with gentle exercise options like resistance bands or a yoga mat. These can be invaluable tools for maintaining physical activity in a comfortable and supportive manner.
6) Subscription to Health and Wellness Apps: Give the gift of holistic well-being with subscriptions to health and wellness apps. Food-tracking, mindfulness, or stress-relief apps are good choices. These tools can aid in stress-reduction and improving mental health, which are essential aspects of managing IBD.
 
 
Gifts that Prioritize Comfort and Relaxation:
 
1) Cozy Loungewear: Comfort is key, especially during days spent at home or in the hospital. Consider soft, loose-fitting loungewear made from gentle fabrics to enhance relaxation and make those cozy days a little more enjoyable. Think pajamas, fuzzy socks, and slippers! For younger children, try finding slippers in their favorite color or with their favorite movie character, TV character, animal, etc.
2) Blankets: Who doesn’t love a good blanket?
3) Gift Cards or Certificates for Relaxing Experiences: Treat your loved one to a spa day, a massage, or another relaxing experience. These gifts not only promote self-care but also show that you understand the importance of moments of respite in the midst of managing IBD.
4) Aroma Therapy and Essential Oils: Create a calming environment with the gift of essential oils known for their soothing properties, Lavender, chamomile, and peppermint can promote relaxation and ease stress, providing a therapeutic touch for someone navigating the challenges of IBD. There are so many cost-effective diffuser options as well. Scented candles are another great option!
5) Journaling Supplies: Encourage reflective practices with a set of journaling supplies, including a beautiful journal, pens, and inspirational prompts. Journaling can be a therapeutic outlet for expressing thoughts and emotions. For younger IBD Warriors, journaling can take many different forms. You may consider purchasing crayons, markers, colored pencils, stickers, and other art supplies.
6) Soft, Plush Toys: Bring comfort and companionship with soft plush toys! Choose cuddly characters or animals to add a touch of warmth to a child’s bedroom, playroom, or hospital room.
 
Miscellaneous Gift Ideas:
 
1) Gift cards: Who doesn’t love a good gift card? You can’t go wrong with an Amazon or Target gift card!
2) Donation to a Nonprofit Organization: Why not simply make a donation to a nonprofit, like the Crohn’s and Colitis Foundation (https://www.crohnscolitisfoundation.org/) or IBD Connect, that may benefit not only your IBD Warrior, but all IBD Warriors!
3) IBD Connect Merchandise: Right now, IBD Connect is having a huge sale! For the month of December, our entire store is 20% off. Use code DECEMBER20 at checkout for the discounted rate to apply. As a reminder, our online store has a variety of IBD Connect merchandise, including: tee shirts, hoodies, water bottles, baseball caps, Warrior Bags, drawstring bags, sweatpants, and beanies. The link to our store is at the bottom of this post.
 
Hopefully, this holiday gift guide gives you some ideas for the perfect gift for your IBD Warrior! Selecting gifts that consider the unique needs of individuals with IBD can truly make a positive impact. If you would like more information about IBD or are in need of financial or emotional support, feel free to contact IBD Connect via our website. You can also reach out to me directly with the email address linked below. IBD Connect wants to ensure that no IBD patient or family feels alone, especially during this holiday season. If you are interested in connecting with a support group to discuss topics like this one more thoroughly and gain some practical insight form other parents, caregivers, and patients, feel free to click the link below for more information! Stay strong IBD Warrior families and happy gift giving!


Disclaimer: This blog provides gift ideas for individuals with Inflammatory Bowel Disease (IBD) based on general considerations. The suggested products are not a substitute for professional medical advice, diagnosis, or treatment. Before making any purchase, it is recommended to consult with a healthcare professional to ensure compatibility with individual health conditions. The inclusion of product links is for informational purposes only, and the blog is not responsible for any outcomes resulting from the use or purchase of these products. Users are advised to exercise discretion and are solely responsible for their purchases, as this blog offers suggestions and does not endorse or guarantee the effectiveness or safety of any specific product.

Main Website
Support Group Information
IBD Connect Store
Emily's Email
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<![CDATA[Compassionate Care: How Nurses Serve as Pillars for IBD Patients]]>Thu, 19 Oct 2023 19:27:34 GMThttp://ibdconnectinc.org/blog/compassionate-care-how-nurses-serve-as-pillars-for-ibd-patients
​Your child has been diagnosed with irritable bowel disease (IBD), and you have been thrust into the chaotic world of healthcare. You’ve met with pediatricians, pediatric gastroenterologists, surgeons, medical receptionists, registered dieticians, and many other professional healthcare workers. In each medical facility that you’ve visited with your child, there always seems to be a nurse. You may have wondered about the role of the registered nurse. What exactly do nurses do? How is a nurse different from a certified nurse assistant or medical assistant? Why is there always a nurse around? While the roles and responsibilities of many healthcare professionals, including surgeons or registered dieticians for example, are generally well understood, the role of a nurse is sometimes underestimated or overlooked. However, the support and care provided by nurses is essential and plays a significant role in the management and treatment of children with IBD. In this post, we will discuss the various medical facilities where you and your child with IBD may encounter a registered nurse, as well as the roles and responsibilities of the nurse in each of these settings. After reading this page, it is my hope that you gain a more thorough understanding of the significant contribution that nurses make to patient and family-centered care. Embracing a good nurse’s support can lead to a more empowered and informed experience for you and your child with IBD!
 
Before we begin, please note that this page is not intended to be a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Additionally, please note that for the purposes of this blog, I will be writing largely from my personal experiences working as a registered nurse. While I have worked in a variety of different settings, I have not worked in each type of facility that will be discussed in this post. If you have any questions about the information that is covered, feel free to email me or check out the links at the bottom of the page to learn more about how to become involved with an IBD Connect support group. Now, let’s dive into the content!
 
What is a Registered Nurse?
Modern-day nursing looks very different from its beginnings in the mid-19th century, where nurses were often viewed as assistants to doctors. Today, nursing is a professional career and one that comes with its own education, skillset, and opportunities for specializations and career advancement. A registered nurse undergoes comprehensive education, often earning a bachelor's degree, before successfully passing a licensure examination to obtain a professional license. Once licensed, nurses can pursue employment in a diverse array of settings, ranging from hospitals and clinics to nursing homes, schools, community centers, patients' homes, and aboard cruise ships, among many others. Based upon their work environment and the needs of their patient demographic, nurses have the option to pursue advanced education, enabling them to specialize in various areas such as pediatrics, geriatrics, mental health, critical care, and more. Moreover, nurses can opt for further degree programs, propelling them into the role of advanced practice registered nurses. Included in this category are nurses who function very similarly to medical doctors, with the ability to diagnose medical conditions and prescribe medications and treatment.
 
In short, nurses are trained professionals who provide a wide range of services amongst many different settings and patient population. These services can include:
  • Direct Patient Care: Nurses are responsible for monitoring patients, administering medications, assisting with procedures, and providing emotional support to patients and their families during difficult times.
  • Health Education: Nurses play a pivotal role in educating patients and the community about various health conditions, preventive care, and overall wellness practices, empowering individuals to make informed decisions about their health.
  • Care Coordination: Nurses often serve as coordinators, collaborating with physicians, physical therapists, speech therapists, dieticians, and other healthcare professionals to ensure that patients receive comprehensive and holistic care tailored to their specific needs.
  • Advocacy: Nurses advocate for their patients, ensuring that their voices are heard and their rights are protected within the healthcare system. They serve as a bridge between patients and other healthcare providers, ensuring that patients' concerns and preferences are addressed.      
 
Where Might You See a Registered Nurse?

Hospitals: Hospitals serve as a crucial setting for IBD patients, especially during acute flare-ups or severe disease exacerbations. Nurses in this environment are often the primary caregivers, responsible for closely monitoring patients' vital signs, administering medications, and providing emotional support during vulnerable moments. In the hospital, your child’s nurse will be your go-to point of contact for any questions or concerns you may have. He or she will act as the coordinator amongst the different healthcare disciplines. If you would like to speak to your child’s doctor, your child’s nurse will be able to ask the doctor to stop by your room. If you would like to speak with a registered dietician, your child’s nurse is the person to ask! Nurses in the hospital setting collaborate closely with physicians and other healthcare professionals assigned to your child’s medical team, ensuring that your child receives timely and effective treatment and care. Nurses act as patient and family member advocates, communicating patients' needs and parental concerns to the medical team, thereby facilitating comprehensive and patient/family-centered care. To help with the responsibilities that the nurse has for each of her patients, sometimes a certified nursing assistant is able to help with patient vital signs, meal delivery, bathing, and other tasks that do not require advanced medical knowledge. This helps explains why there always seems to be several people in and out of your child’s room!
 
Clinics and Outpatient Centers: You will encounter nurses with your child’s primary care doctor, gastroenterologist’s office, outpatient colonoscopy settings, and outpatient infusion settings. In all of these outpatient settings, nurses can educate patients about disease management, including medication adherence, dietary modifications, and the importance of regular follow-ups. They also provide emotional support and address patient and parental concerns, fostering a sense of trust and understanding that is vital for effective disease management. If your child needs an outpatient colonoscopy, a nurse will be the one to place the IV in your child’s arm or draw bloodwork! If your child is going to an infusion clinic for IV medication administration, a nurse is the one to start the IV medication and assess for medication reactions. Sometimes, outpatient settings will utilize medical assistants. Medical assistants are able to take vital signs, measure your child’s growth, and ask you or your child some basic questions to collect information. Often times, medical assistants are confused for nurses in these settings!
 
School: If your child is attending school, chances are you are familiar with their school nurse. For children managing IBD, the school environment can present unique challenges that require specialized care and support. In this setting, the school nurse serves as a dedicated ally, playing a pivotal role in ensuring the well-being and academic success of your child. The school nurse can help to manage and administer any necessary medications during the school day, take action and provide medical intervention in an emergency situation, and assist in creating and implementing a 504 plan or a similar equivalent.  
 
Home Healthcare: Potentially the most common reason for a home healthcare nurse for a pediatric IBD patient is IV medication administration. Home healthcare nurses provide this essential service in the comfort of your family’s home. Additionally, home healthcare nurses can help educate patients and their families on how to manage symptoms effectively, emphasizing the significance of a healthy lifestyle, stress management, and regular exercise in controlling the disease. Home healthcare nurses serve as a dependable source of guidance and support, empowering your child to maintain their independence and quality of life.
 
Community Health Centers: Nurses in community health centers focus on promoting overall wellness and preventive care for IBD patients within the local community. They organize health screenings to detect early signs of disease exacerbation, offer counseling on lifestyle modifications to alleviate symptoms, and provide guidance on nutritional choices that can help alleviate discomfort associated with IBD. Furthermore, these nurses play a vital role in organizing support groups and educational workshops, creating a sense of community and understanding among patients coping with similar challenges. They collaborate with local organizations and advocacy groups to raise awareness about IBD, debunk common misconceptions, and ensure that patients and family members have access to the necessary resources and support networks.
 
Telehealth Services: In the era of digital healthcare, nurses are increasingly utilizing telehealth services to provide remote care and support to IBD patients. Through virtual consultations, nurses can assess symptoms, provide education on disease management, and offer guidance on medication adjustments. They use telemonitoring devices to track patients' vital signs and disease progression, allowing for early intervention and prevention of complications. Moreover, nurses utilize telehealth platforms to conduct follow-up appointments, discuss treatment plans, and address any concerns or questions that patients may have. Telehealth services not only enhance the accessibility of care for IBD patients, particularly those residing in remote or underserved areas, but also foster a continuous connection between patients and healthcare providers, promoting a sense of reassurance and support.
 
Wound, Ostomy, and Continence Nurses
As mentioned previously, registered nurses are able to pursue additional educational opportunities and specializations depending on the setting in which they work, the patient population they are working with, and their clinical interests. One such certification is a wound, ostomy, and continence certification. Most major hospitals have at least one “wound nurse,” a nurse that possess specialized knowledge and skills in managing and caring for several different types of wounds. These nurses also have the ability to do additional education in continence-related skin issues and ostomy application, management, and complications. If your child has an ostomy, chances are you’ve worked with a few of these nurses! Wound nurses play a pivotal role in educating pediatric IBD patients and their family members about proper ostomy bag maintenance, including changing the bag, ensuring a proper seal, and maintaining skin integrity around the stoma. They provide patients and caregivers with in-depth training on how to handle and empty the ostomy bag, as well as guidance on selecting appropriate ostomy supplies that best suit the patient's individual needs and lifestyle. If any skin-related complications related to your child’s stoma arise, wound nurses are able to assess the area and implement proper protocols for treatment. Although many wound care nurses are found in the hospital, you can also encounter wound care nurses in outpatient and home settings.  
 
Advanced Practice Registered Nurses
There are several different types of advanced practice registered nurses, or APRNs, including: family nurse practitioners, acute care nurse practitioners, certified nurse midwives, and certified nurse anesthetist amongst others. These nurses have either a Master’s or Doctorate Degree in their specialty, and have many of the same responsibilities as medical doctor’s or physicians assistants in their respective field. You probably have already encountered a few APRNs! A certified nurse anesthetist may be the provider ordering sedative medication for your child’s colonoscopy. An acute care nurse practitioner specializing in gastroenterology may be ordering your child medications in the hospital. A family nurse practitioner could be your child’s primary care provider.
 
Hopefully, the information on this page serves to give you a more thorough understanding of the different roles and responsibilities that registered nurses may have in the care and management of IBD. A nurse can work in various medical settings and within several different specialties. The profession of nursing embodies adaptability, compassion, and a relentless commitment to serving others. Nurses are not only caregivers but also advocates, educators, and innovators who continuously strive to make a positive impact on the lives of individuals and communities. Their resilience, flexibility, and dedication solidify their position as the backbone of the healthcare system, fostering a culture of healing, empathy, and hope that transcends the boundaries of medicine and touches the lives of all those they serve. Nurses, as are all other members of your child's heatlhcare team, are incredibly important in the management and care of those with IBD! 
 
As we wrap up, if you would like more information or support, feel free to email me or contact another member of the IBD Connect team through our main website. My email address is linked below. If you are interested in connecting with a support group, feel free to click the link below for more information! Stay strong IBD Warrior families and if you have a chance, thank a nurse!
IBD Connect Main Page
IBD Connect Support Groups
Emily's Email
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<![CDATA[Active Living: IBD and Exercise]]>Fri, 06 Oct 2023 04:00:00 GMThttp://ibdconnectinc.org/blog/active-living-ibd-and-exercise
Hello IBD Warrior families! Today’s blog post will differ slightly from recent IBD Connect blog content. Whereas previous posts have taken a purely educational approach or were structured in an interview format, this blog post will largely focus on providing more information about IBD Connect’s annual Running in Place 5K event scheduled for tomorrow, October 7th, 2023. For those of you have attended in past years, you are aware that physical activity is a major component of this event. Registered teams can choose to walk, run, or kayak a canal trail. However, have you ever wondered what the role of exercise is to an IBD patient? Do the same rules apply to an IBD patient as the general population? Is exercise still a good thing for your child if he or she is diagnosed with IBD? Can exercise ever be harmful to the IBD patient? These are all questions that this post will aim to explore. By reading this page, it is my hope that you are able to gain an enhanced understanding of how an IBD patient can achieve an active lifestyle, as well as glean practical applications to carry out this vision in your child’s daily life.
 
Before we begin, please note that this page is not intended to be a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan or exercise goals/limitations, please seek out the professional medical advice of your child’s doctor or healthcare team. Additionally, please note that this page cannot be a substitution or a replacement for the advice of a personal trainer or fitness instructor. If you or your child would like to seek the advice of a personal trainer or fitness instructor, please understand that it is best to communicate with your child’s doctor for approval of any fitness goals or plans. Additionally, remember that you can always reach out to a member of the IBD Connect team or other parents of children with IBD for more information or support in this area. If you would like more to learn more about how to connect with a support group, feel free to email me or check out the links at the bottom of this post. Now, let’s dive into the content!

Running in Place 5K Event Information

Undoubtedly, most readers are aware that the upcoming Running in Place 5K event is IBD Connect’s most highly anticipated, top fundraiser event of the year. Amazingly, this year marks the fifth one! If you already have a thorough understanding of what this event entails, please feel free to skip over this section of the post. However, if you would like more details about this event, please containing reading below.   
 
Where: Blackstone Valley Heritage Park (287 Oak Street Uxbridge, MA 01569).
 
When: Registration opens at 10 AM, and the event kick-off is 11 AM.
 
What: This location is home to a nature trail that runs alongside a canal. There is also a sizable open grassy area. At 11 AM, all teams that have registered for the event can choose to walk, run, or kayak the canal trail, essentially completing a 5K. Teams that have joined through our event website have been helping to fundraise for the event for several weeks, with the opportunity to earn a variety of prizes at certain set fundraising benchmarks. Although the 5K is the main event, in the open grassy area, there will be several activities, including: an obstacle course, a pumpkin painting contest, lawn games, and more. There will also be several speakers, including last year’s top fundraising team, that will have the opportunity to share their personal stories of how IBD has impacted them. Additionally, prizes will be awarded at the event for the top fundraising team, the team that demonstrates the best sportsmanship, and the team with the best outfits. Last, but certainly not least, there will be plenty of food!
 
Why: All proceeds from the event will go directly to raising IBD awareness, financially supporting families in crisis, and funding educational materials for support group members and newly diagnosed IBD patients. We also like to have fun!
 
Common FAQs:
  • Why is the event called Running in PlaceThe event is called “Running in Place” because you can complete the 5K wherever you are! You do not necessarily need to be at Blackstone Valley Heritage Park in Uxbridge, MA to participate in the event. If you would like to participate in the event, but are unable to be with us at this location, you can complete the 5K wherever you choose. Simply send in a short video clip of yourself at the beginning and end of your 5K. If you are choosing to participate as a team from another state or location, the team captain will make the final decision on location and method of completing the 5K (walking, running, kayaking, etc.). Be creative!
  • I am unable to participate in the event. Is there a way I can donate to the cause? Yes! You can access our event website using the link at the bottom of this post. On the main page of this website, you will see a button titled “Donate Now.”
  • Are donations tax-deductible? Yes! IBD Connect, Inc. is a 501(c)3 tax-exempt organization and your donation is tax-deductible within the guidelines of U.S. law. To claim a donation as a deduction on your U.S. taxes, please keep your email donation receipt as your official record. We'll send it to you upon successful completion of your donation.

General Guidelines for Physical Activity in a Healthy Individual

As previously discussed, physical activity is a crucial element of our upcoming Running in Place 5K event. Before we dive into the specifics regarding how physical activity can impact IBD and vice versa, it is important to discuss the benefits of physical activity, as well as the current exercise recommendations, for the average, undiagnosed individual. Physical activity is undoubtedly a cornerstone of an active, healthy lifestyle, providing numerous benefits for our bodies and minds. Regular exercise can help manage weight, reduce the risk of chronic diseases like heart disease and diabetes, strengthen bones and muscles, and improve overall physical health. Exercise has also been shown to improve mental health, lessening symptoms of depression and anxiety and promoting the release of endorphins, which can enhance mood and reduce stress. Staying active enhances daily functioning, increases energy levels, and fosters better sleep, leading to an improved quality of life. Essentially, the benefits of exercise are numerous, and this list is by no means exhaustive. To guide healthy individuals in achieving and maintaining optimal health through exercise, the Centers for Disease Control and Prevention (2022) offers comprehensive physical activity recommendations, which can be found here: https://www.cdc.gov/physicalactivity/index.html. It is important to note that these recommendations are curated specifically for the healthy individual.
 
CDC Physical Activity Recommendations for Children and Adolescents:
Children and adolescents aged 6-17 should aim for at least 60 minutes of moderate-to-vigorous-intensity aerobic activity daily. This should include activities such as walking, running, or anything that makes the heart beat faster! Children in this age range should also include muscle-strengthening activities, such as push-ups or climbing, at least three days a week, as well as activities that promote bone health, like jumping and running, at least three days a week. Children ages 3-5 should be physically active throughout the day. Parents and caregivers should incorporate and encourage active play.
 
CDC Physical Activity Recommendations for Adults:
Although this blog post is geared primarily to parents of children with IBD, I am also including the adult recommendations for any curious adult readers! Adults should aim for at least 150 minutes of moderate-intensity aerobic activity or 75 minutes of vigorous-intensity aerobic activity per week. This can be broken down into shorter sessions throughout the week, or you may decide to do an equivalent mix of moderate-and vigorous-intensity aerobic activity throughout the week. In addition to aerobic activity, adults should engage in muscle-strengthening activities for all major muscle groups on two or more days per week. Adults, especially older adults, should also incorporate balance and flexibility exercises to reduce the risk of falls.
 
For more information on the CDC’s physical activities guidelines, feel free to check out their website linked above. This is also a great resource for determining what types of exercise and activities constitute moderate-intensity aerobic, vigorous-intensity aerobic, muscle-strengthening, and bone strengthening exercise. A list of suggested age-appropriate activities is even provided for each type of exercise! For more information, please see https://www.cdc.gov/physicalactivity/basics/children/what_counts.htm.

IBD and Physical Activity: The Research

Unfortunately, the research is not very clear on the specifics of how exercise can impact an individual with IBD. One recent study found that moderate-intensity exercise is generally considered safe and beneficial for those with non-severe disease (Engels, Cross, & Long, 2017). This theory is widely echoed in several other research studies, as well as by the Crohn’s and Colitis Foundation (https://www.crohnscolitisfoundation.org/campus-connection/navigating-college/exercise). There is evidence to suggest that regular, moderate-intensity exercise is associated with an increased length of remission and a decreased risk of future active disease and flare-ups (Jones et al., 2015). This may be because regular exercise has been shown to reduce stress levels, and higher amounts of stress are associated with periods of flare. Additionally, regular exercise has some added benefits to the diagnosed individual with non-severe disease, such as improving immunological response, strengthening bone density/health, reversing the decrease of muscle mass/strength, lowering the risk of colon cancer, enhancing mood, and improving digestive function. Overall, the research varies widely, but in general, it is believed that moderate-intensity exercise is beneficial for an individual with well-controlled IBD. More research is definitely needed to provide specific recommendations regarding the ideal intensity, frequency, and type of exercise for this population.
 
Keeping this in mind, the safety and effectiveness of higher-intensity exercise for those with severely active disease are uncertain (Engels, Cross, & Long, 2017). In general, the guidelines for exercise differ during periods of disease exacerbation. During these times, it is best to consult your child’s doctor to determine the best course of action. Often times, this will include rest and a pause on higher-intensity exercise.

How to Approach Physical Activity with Your Child: Tips and Recommendation

Having an understanding of the current exercise recommendations for a healthy individual, as well as the latest research on exercise and IBD, is important to determine how to best approach exercise with your diagnosed child. What should your child be doing in terms of physical activity? How do you prepare and teach your child to exercise as an adult? What does a healthy relationship with exercise look like for a child with IBD? How do you start to implement exercise in your household?
 
Tip #1: Consult with your child’s healthcare provider. This is by far the most important tip! Before starting an exercise routine for your child with IBD, it’s crucial to consult with their healthcare team. They can provide insights into your child’s specific condition and relay any recommendations or limitations your child may have for safe physical activity.
 
Tip #2: Be aware of your child’s severity of disease. Is your child in flare? Is your child going through a period of disease exacerbation? Or is your child in remission or only having mild symptoms? Overall, the research on IBD and exercise seems to indicate that the recommended durations of moderate-intensity exercise can provide an IBD patient with several benefits, most notably increasing length of remission and improving overall IBD symptoms. However, higher intensity physical activity during periods of increased symptoms or while in flare may exacerbate IBD symptoms and contribute to longer recovery times. During these times, it may be best to rest and allow the body to recover. As mentioned previously, there is so much more research needed in this area! Keep in mind that activity levels or exercise goals for a child/adolescent will differ depending on the severity of your child’s disease.
 
Tip #3: Know what constitutes moderate-intensity physical activity for children and adolescents. The CDC (2022) defines moderate-intensity activity as a 5 or 6 on a scale of 0-10, where 0 is equivalent to sitting, and 10 is equivalent to the highest level of activity. With moderate-intensity activity, the heart will beat faster and breathing will be more challenging. Some examples of moderate aerobic level physical activity for children are brisk walking, bicycle riding on mainly flat surfaces, and throwing and catching a baseball. For adolescents, this could be also be house or yard work, or recreational activities, such as kayaking or hiking. For more examples of moderate level exercise or for examples of muscle strengthening and bone strengthening activities for each age group, please refer to the CDC website. https://www.cdc.gov/physicalactivity/basics/children/what_counts.htm Remember, the CDC suggests at least 60 minutes of moderate level aerobic activity daily for children and adolescents, as well as muscle strengthening and bone strengthening exercises three times weekly.

​Tip #4: If your child is just starting to become physically active, choose suitable activities and make it fun! 
Select activities that are age-appropriate and align with your child's interests. Keep in mind that not all exercises are suitable for every child with IBD. Low-impact activities like walking, swimming, and gentle yoga are often good choices to start with. Exercise should be enjoyable for children. Incorporate games, music, or activities they love to keep them engaged and motivated.
 
Tip #5: Monitor symptoms. Teach your child to listen to their body. Encourage them to pay attention to how they feel during and after exercise. If they experience pain, discomfort, or a worsening of IBD symptoms, it's essential to stop the activity and consult with a healthcare professional.
 
Tip #6: Monitor nutrition. Nutrition plays a vital role in managing IBD. Ensure your child eats a balanced diet that provides the necessary nutrients for energy and muscle recovery. Consult with a dietitian if needed to create a suitable meal plan.
 
Tip #7: Provide encouragement and support. Praise your child's efforts and celebrate their achievements, no matter how small. Be their biggest cheerleader and offer emotional support to help them stay motivated. Teach your child to view physical activity positively, but also encourage periods of rest and recovery if symptoms increase. It’s a balance!
 
Hopefully, the information on this page provided you with new insights into the research being conducted on IBD and exercise, as well gave you a little more confidence in your ability to encourage your child to pursue a healthy relationship with physical activity. Remember to always keep the lines of communication open with your child, so they feel comfortable discussing their feelings, concerns, and questions about exercise with you. If you would like more information or support, feel free to email me or contact another member of the IBD Connect team through our main website. My email address is linked below. If you are interested in connecting with a support group to discuss topics like this one more thoroughly and gain some practical insight, feel free to click the link below for more information! Stay strong IBD Warrior families, and we hope to see you tomorrow at our annual Running in Place 5K event!

References

Centers for Disease Control and Prevention. (2022, May 20). Physical activity. Centers for Disease Control and Prevention. https://www.cdc.gov/physicalactivity/index.html

Crohn’s & Colitis Foundation. (n.d.). https://www.crohnscolitisfoundation.org/campus-connection/navigating-college/exercise

Engels, M., Cross, R., & Long, M. (2017). Exercise in patients with inflammatory bowel diseases: Current perspectives. Clinical and Experimental Gastroenterology, Volume 11, 1–11. https://doi.org/10.2147/ceg.s120816
Exercise.

Jones, P. D., Kappelman, M. D., Martin, C. F., Chen, W., Sandler, R. S., & Long, M. D. (2015). Exercise decreases risk of future active disease in patients with inflammatory bowel disease in remission. Inflammatory Bowel Diseases, 21(5), 1063–1071. https://doi.org/10.1097/mib.0000000000000333  

IBD Connect's Running in Place Event Website

Click Here to Access the Running in Place Website

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<![CDATA[Compassionate Conversations: Helping Your Child Understand Their IBD Diagnosis]]>Fri, 22 Sep 2023 04:00:00 GMThttp://ibdconnectinc.org/blog/compassionate-conversations-helping-your-child-understand-their-ibd-diagnosis
​Receiving a diagnosis of inflammatory bowel disease, or IBD, for your child can be an emotional, daunting, and overwhelming experience. You may find yourself grappling with a whirlwind of emotions, from concern and uncertainty to fear and grief. You may be wondering how you will ever be able to help guide your child through the diagnosis and management of the condition when you have so many questions yourself. How will you break the news of the diagnosis to your child? How will you encourage healthy conversations about IBD? As a parent, your support and communication with your child can make all the difference in helping your child to cope and adjust to this new reality. In this post, we'll aim to explore strategies and tips for talking to your child about their new IBD diagnosis.
 
Before we begin, please note that this page is not intended to be a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Additionally, please note that this page only provides suggested tips and strategies for having these conversations with your child. You know your own child best and can better discern if these strategies will be helpful for you and your child. Trust your intuition! For more information or support, you can communicate with your child’s doctor or another healthcare professional. You can also talk to a member of the IBD Connect team or other parents of children with IBD for more suggestions on how to smoothly navigate these types of conversations. The majority of parents or caregivers who attend IBD Connect support groups have undergone similar conversations with their child. If you would like more information about how to connect with a support group, feel free to email me or check out the links at the bottom of this post. Now, let’s dive into the content!
 
Tip #1: Remember that this is not a “one and done” conversation.
Just like with any other serious topic you need to discuss with your child, talking about an IBD diagnosis is not a “one and done” conversation. When you initially talk to your child about the diagnosis, remember that your child’s future ability to manage their condition or process their emotions is not dependent upon this one first conversation. Rather, as the parent or caregiver, you should aim to foster an environment in which your child feels comfortable coming to you with their anxieties, questions, or concerns at any given time. Your child may not be ready to talk about their feelings or ask questions with the first conversation you have about the diagnosis, but they should know that they can come to you at any time to do so. Communicating your love and support to your child is vital. Create a culture in your home that allows your child to feel free to ask questions or express their emotions about IBD at any time. You don’t necessarily need to have one “big” conversation. Having a lot of “little” conversations is okay too!
 
Tip #2: Be honest and age-appropriate.
Begin conversations about IBD with honesty, but be sure to tailor your honest explanations to their developmental stage, using age-appropriate language and concepts. Remember, telling your child about their IBD diagnosis is a process that evolves as they grow. As mentioned earlier, it is not a “one and done” conversation.  Be sure to keep the lines of communication open so your child can feel comfortable discussing their feelings, concerns, and questions with you. Together, you can navigate the challenges of IBD as a team, ensuring your child receives the care and understanding they need to thrive. Here are some general guidelines for talking with your child about their new IBD diagnosis at each age level. Remember, you know your child best!

​Preschool and Early Elementary School Age (3-7 Years)
At this age, children typically have limited understanding of complex medical terms. You may choose to begin by explaining that there's something inside their tummy that's not feeling well. You can use a gentle analogy, such as suggesting that their tummy is a "tummy superhero" that is fighting against a tricky villain. You may choose to create a simple storybook or use drawings to illustrate the concept of IBD. Continuing with the superhero analogy, you may choose to describe how doctors and medicines are their tummy’s “sidekicks” helping to make their tummy feel better and fight against the villain. There are several other analogies you can use to help your child understand their diagnosis. Feel free to research and pick one that works for your child! Emphasize that they are not alone, and you, along with medical professionals, are there to help. Reassure your child that there is nothing they did to cause this diagnosis and that you love them no matter what.
 
Late Elementary School Age (8-12 Years)
At this age, you can explain your child’s diagnosis in a little more detail. Explain that IBD is a condition where their digestive system becomes inflamed, being sure to use age-appropriate terms like "inflammation" instead of complex medical jargon. Ensure your child understands that the GI tract is responsible for the digestion of food, absorption of nutrients, and elimination of waste. Explain that the GI tract starts at the mouth and continues until the rectum, and the inflammation in the GI tract is what is causing symptoms. Because your child is able to understand more at this age, you can begin to expect a lot more questions. As previously discussed, be honest and patient in answering them. If you do not know an answer to a question, do not make the answer up! Instead, walk through the process of finding the answer to the question together. Call your child’s doctor’s office or speak with another healthcare professional. You can also use diagrams, pamphlets from your doctor’s office, or trusted educational websites geared towards children to clarify any questions. Walk through the process of determining the answer together. This gives your child the proper foundation for navigating their condition independently in the future. Additionally, going forward, make sure to involve your child in the process of managing their IBD as much as you can. Discuss treatment options and involve them in decisions when appropriate. This can not only teach them skills they will need to independently manage their condition in the future, but it will also help them feel a sense of control over their diagnosis.
 
Teenagers (13-18 Years)
Teenagers can grasp more complex concepts, therefore, be sure to explain IBD to them in much more detail, including IBD’s impact on daily life, potential triggers, and the importance of medication and diet. You and your teenager are a team! It is important to note that after the initial conversations about IBD, start to encourage your child to take more responsibility for managing their health. You can do this through continued conversations in which you teach your child how to track symptoms, manage medications, and communicate with doctors. Ensure your child can name and take all their scheduled medications independently, understand and navigate health insurance, schedule appointments for themselves, and talk to medical professionals about their symptoms/treatment options. As you encourage your child to become more independent in managing their health, be sure to acknowledge that the emotional aspect of living with a chronic condition may begin to impact your child more. Address this concern with your child by thoroughly discussing how to cope with stress, anxiety, and any feelings of isolation, and encourage them to seek support from friends, family, or support groups. Remember, your child will need to be able to independently manage their condition soon. As a parent or caregiver, you can give them the tools and building blocks to do so from the very first conversations you have about IBD.
 
Tip #3: Understand the diagnosis.
Before you can have serious discussions with your child about IBD, it's essential to have some knowledge of the diagnosis yourself. IBD is a complex condition. Do some research to learn about its symptoms, treatment options, and what to expect in terms of quality of life and daily routines. This knowledge will enable you to answer your child's questions with confidence and provide them with the most accurate information. However, remember that you do not have to know all the answers, and if you are unable to answer a question, be honest with your child. As mentioned earlier, let your child know that you are unsure, and walk through the process of finding the answer together! It’s okay to say contact a healthcare professional together or find an answer on a trusted website when appropriate.
 
Tip #4: Normalize your child’s feelings.
Let your child know that it's normal to feel a range of emotions, including fear, sadness, or anger. Offer reassurance that these feelings are valid and that you're there to support them. If your child does express their emotions, let them know that they are already showing incredible strength and courage to do so. Give them praise for sharing their true feelings. After offering praise, extend support by guiding and encouraging your child to focus on what they can control. Emphasize that while some aspects of IBD may be out of their control, there are actions they can take to manage their condition, such as following a treatment plan, maintaining a healthy lifestyle, and seeking support from healthcare professionals. Again, reassure your child of your continued love and support.
 
Tip #5: Give your child some encouraging facts.
When you start to have those initial conversations about IBD with your child, it is important for your child to know a few encouraging facts early on.
  • Ensure that your child understands that IBD is not their fault. Acknowledge that there is not anything that they ate or did to inflict IBD on themselves. You may want to consider mentioning that the exact cause of IBD is unknown, and explain the most widely believed theories and latest research on this topic at an age appropriate level.
  • It may also be encouraging for your child to discuss that they are not the only ones living with IBD. In fact, there are many successful people living with IBD in many different roles and settings, including sports, entertainment, business, and advocacy.
  • You can explain that generally speaking, individuals with IBD spend more time healthy (in remission) than they are sick (in flare).
  • Explain to your child that the challenges of living with a chronic illness can give them a unique perspectives on life. Many people with IBD develop a deep appreciation for the little things and a strong sense of empathy for others facing difficulties.
 
Tip #6: Involve healthcare professionals.
Your child's healthcare team can play a vital role in helping them understand and manage their IBD. Consider involving your child’s pediatric gastroenterologist, nurse, or child life specialist to further explain the diagnosis, medications, and treatment options to your child. These professionals are experienced in communicating with children and can provide valuable support and information. They also may be able to direct you and your child to age-appropriate resources and educational materials for IBD, such as websites, books, pamphlets, or organizations.
 
Tip #7: Connect with support networks.
IBD Connect can offer you valuable resources, support groups, and educational materials to help you navigate the journey of talking with your child about their IBD diagnosis. Consider reaching out to us to connect with other parents and children who have gone through similar experiences. Sharing stories and tips can help both you and your child feel less isolated and more informed. Getting involved in support groups can also give your child the opportunity to meet other children with IBD. The support, camaraderie, and understanding offered from peers becomes increasingly important as your child ages. Start building connections now!
 
Hopefully, the information on this page gives you a little more confidence in your ability to have conversations about IBD with your child. Remember, telling your child about their IBD diagnosis is a process that evolves as they grow. Tailor your conversations to their age and maturity level, and remember to provide ongoing support and reassurance. Keep the lines of communication open, so they feel comfortable discussing their feelings, concerns, and questions with you. Together, you can navigate the challenges of IBD as a team, ensuring your child receives the care and understanding they need to thrive. If you would like more information or support, feel free to email me or contact another member of the IBD Connect team through our main website. My email address is linked below. If you are interested in connecting with a support group to discuss topics like this one more thoroughly and gain some practical insight, feel free to click the link below for more information! Finally, I would just like to give one final reminder not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Stay strong IBD Warrior families and go tackle those tough conversations with confidence!
IBD Connect Main Website
IBD Connect Support Groups
Emily's Email
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<![CDATA[Traveling with IBD: What You Need to Know]]>Fri, 08 Sep 2023 04:00:00 GMThttp://ibdconnectinc.org/blog/traveling-with-ibd-what-you-need-to-know
With the school year well underway, you may be questioning the title of this blog. Traveling with IBD? Why talk about travel at this point in the year? There are several reasons why talking about travel now is timely. First, as a parent to a child with IBD, it is my hope that you are able to take the main discussion points from this post into consideration as you plan upcoming family trips. Maybe your family would like to schedule a vacation over winter or spring break this school year. Maybe you are already planning a summer vacation for next year! Hopefully the information in this blog equips you to adequately prepare in advance for these types of trips. Second, sometimes travel is unexpected! You may need to travel with your child for a family emergency or another similarly sudden situation. The information that you read about traveling with IBD today may be fruitful to your family at a later date. Third, while this blog is mainly geared towards parents or caregivers of a child with IBD, there is a diverse audience of readers. Individuals diagnosed with IBD who travel for work or personal reasons may benefit from some of the tips suggested in this post. Traveling is one of life’s greatest pleasures, and it’s something that everyone should have the opportunity to experience if desired, regardless of their health condition! Individuals with IBD may face unique challenges when it comes to traveling, but with careful planning and preparation children and adults with IBD can explore the world while effectively managing their condition. It is my hope that this post imparts valuable tips to empower you and your child to travel with confidence and peace of mind!
 
Before we begin, please note that this page is not intended to be a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Additionally, please note that this page only provides a brief overview of traveling with IBD in the form of suggested tips. For more comprehensive information, you can communicate with your child’s doctor or another healthcare professional. You can also talk to other parents of children with IBD for more suggestions on how to smoothly travel with an IBD diagnosis. The support groups at IBD Connect would be a great opportunity to ask these types of questions to other people! Now, let’s dive into the content.
 
Tip #1: Talk with your child’s doctor.
The first step in creating travel plans is to talk with your child’s doctor to ensure that your child’s condition is stable and well-managed. Remember, you will not be in close proximity to your child’s treatment team and the medical facilities in which you are most comfortable with. If your child is in flare, going through a medication change, or has an upcoming colonoscopy, it may not be an appropriate time to plan an extended trip or vacation. If traveling is a necessity, let your child’s doctor know so that you are able to follow medical advice and the best course of action for your child’s health and wellbeing. If you are traveling to a different time zone, discuss your child’s current medication schedule and ask about any dose and/or schedule adjustments you may need to make. If you are traveling internationally, inquire about the vaccination requirements/recommendations for your child.
 
Tip #2: Research physicians, pharmacies, and hospitals in the travel destination.
Before your trip, research medical facilities, including: hospitals, gastroenterologists/IBD specialists, and pharmacies in the areas you'll be visiting. Keep a list of the name, the address, and the phone number of each facility that you find. You may choose to type your list out on your phone or other electronic device to ensure you don’t lose access to all the information you’ve gathered in lost/delayed baggage. If you choose to write out your list with traditional pen and paper, make sure you carry it within your carry-on bag. Better yet, take a picture of your list on your phone so you have it in two locations! For help with gathering information, you can ask your child’s doctor for the names of physicians in the areas you plan on visiting. If you are traveling internationally, you can also consult the International Association for Medical Assistance to Travelers https://www.iamat.org/. They will be able to provide you with a list of English-speaking doctors in several countries. You can also look up the U.S. embassy or consulate in the country you will be visiting. There should be a list of healthcare providers that you can access during your stay.
 
Tip #3: Make a plan for prescription medications.
If your child is on prescription medications, it is important that you have a medication management plan for travel. As previously mentioned, prior to travel, you should discuss your child’s medication schedule with his or her physician. There may need to be dose/schedule changes to account for different time zones or travel circumstances. You will also want to request a typed, signed document from your child’s physician describing your child’s medical diagnosis and any current medications your child is taking. Make copies of this document and carry it in several different locations, as it may be necessary with customs officials or in an emergency. Similarly, you should bring copies of all the current medication prescriptions for your child. If you are traveling internationally, you may want to research any foreign brand names of your child’s medications so you are well prepared if there is an emergency. Contact your child’s pharmacist if you are planning on taking any medications out of the country, as other countries have different medication laws. Certain medications that are legal to take or have a prescription for in the United States are illegal in other countries. Your pharmacist should be able to help you determine how to navigate these types of situations. Ensure that you pack more medication than you anticipate needing in case you run into travel delays or have a medical emergency. Make sure to pack the medication, as well as any nutritional supplements, in the original labeled container. Finally, pack your child’s medication in a carry-on bag to prevent lack of access if baggage is lost, delayed, or misplaced.
 
Tip #4: Make a bathroom plan!
Bathrooms are always a concern, aren’t they? To make sure you and your child are at ease, try to map out bathrooms the same way that you currently do in your day-to-day life. If you are flying, try to book seats as close to the bathroom as possible. If your child is old enough to go to the bathroom alone, you may consider having him/her sit in the aisle seat to minimize disruptions. If you are planning a road trip or staying within the U.S. for your travels, you can download the “We Can’t Wait” app by the Crohn’s and Colitis Foundation (https://www.crohnscolitisfoundation.org/wecantwait). This is a restroom finder app that uses participating businesses/establishments and crowd sourced restrooms to provide a simple way to quickly locate public bathrooms. The Crohn’s and Colitis Foundation also has an “I Can’t Wait” card that you can use to show business owners or managers to help explain IBD in easy to understand language. This will hopefully help to grant your child access to an employees’ only bathroom or skip a long bathroom line. According to this Crohn’s and Colitis Foundation, this resource is available by calling 888-GUT-PAIN (888-694-8872). More information is available at this link: https://www.crohnscolitisfoundation.org/get-involved/become-member/individual-membership. You can also make a “to-go” bag for urgent bathroom needs that contains an extra change of clothes, extra underwear, plastic bags for soiled clothes, toilet paper/wipes, hand sanitizer in small TSA approved containers, and any other essential bathroom items your child may need. If you are traveling internationally, try to learn certain words or phrases that may help you with locating a bathroom. You can also download translation apps onto your phone.  
 
Tip #5: Pack extra supplies.
Packing for a child with an IBD diagnosis requires extra preparation and planning, as there are additional items that need to be considered. Some of these items were mentioned previously, but here is a more comprehensive packing list of  the “extra supplies” you may want to consider when traveling:
·      A typed and signed note from your child’s physician describing your child’s medical diagnosis and list of prescribed medications
·      Copies of your child’s prescriptions
·      Health insurance card/information
·      Contact information of your child’s doctor
·      Prescribed medications, including spare medication, in the original containers
·      Nutritional supplements in the original containers
·      List of local hospitals, gastroenterologists/IBD specialists, pharmacies in the area you are traveling to
·      “To-go” bag with a change of clothes, extra underwear, plastic bags for soiled clothes, toilet paper, wipes, hand sanitizer, etc.
·      If your child has an ostomy, make sure to pack ostomy supplies. Pack more than anticipated in case of travel delays or unexpected circumstances.
·      Food and snacks that you know will not cause your child any discomfort and align with any dietary restrictions
·      Bottled water and rehydration packets
·      Travel insurance documentation
 
Tip #6: Familiarize yourself with TSA guidelines.
Make sure you familiarize yourself with the TSA guidelines for disabilities and medical conditions found here:  https://www.tsa.gov/travel/special-procedures. They also have a downloadable card that you can find on their website, print, fill out, and hand to an agent. If you have an ostomy, you may need to alert the agent. All ostomy supplies should be permitted through security. Finally, keep in mind that if your child has any liquid medication that exceeds the 3-1-1 rule (3.4 oz), you may need to make a verbal or written declaration of this to the TSA agent. This is where documentation from your doctor may be helpful as well.
 
Tip #7: If you are traveling internationally, be aware of some extra considerations.
Double check with your current insurance company to see if your health insurance policy covers any international medical services (hospital visits, doctor visits, prescription medication, etc.). If necessary, do your research and purchase comprehensive travel insurance that covers medical emergencies, including IBD-related complications. As previously mentioned, you may want to familiarize yourself with the foreign brand names of your child’s medications, as well as words/phrases in the local language that will assist you in finding bathrooms or explaining a medical emergency. Be sure that you have an app, browser, or device that will assist you with translation should you need it. Finally, be aware that traveler’s diarrhea is fairly common with international travel. Diarrhea can cause dehydration, which can worsen IBD symptoms and lead to further complications. There are several things that you can do to try and prevent your child from developing traveler’s diarrhea. For example, never have your child drink tap water, unless the water has been boiled first. This even includes the water used while brushing teeth! Avoid ice, ice cream, raw meat, raw vegetables, uncooked/unpasteurized dairy products, and food from vendor’s carts. This is not a comprehensive list of interventions. If you are traveling internationally, you can discuss further interventions with your child’s healthcare provider to get a more thorough understanding how to prevent any illness.
 
Tip #8: Plan for ways to make sure your child’s basic medical and emotional needs are met throughout the day.
Use your best judgement and common sense when traveling with your child with IBD. If you have the opportunity to plan your trip over an extended period of time, ensure that the travel days are not significantly overwhelming or stressful for your child, as stress can trigger or exacerbate symptoms. If you are planning on a road trip, plan for frequent bathroom breaks and rest stops. Pack “safe” food and snacks that are gentle on your child’s digestive system and align with any dietary restrictions. Ensure access to safe, clean water (i.e. bottled water), as well as rehydration solutions. It may be helpful to research the menus of restaurants in your travel destinations ahead of time. Make sure there is something on the menu that your child is able to eat and enjoy! Be mindful of infection risk and practice diligent handwashing. Finally, make sure your child has some comfort items packed, such as a blanket, pillow, favorite toy, favorite book, travel seat cushion, etc.
 
Tip #9: Have an emergency plan in place.
As previously mentioned, ensure that you pack a typed and signed note from your child’s doctor explaining their diagnosis and list of current medications. It may be helpful to also have a typed action plan from your child’s doctor in case your child’s condition suddenly worsens, as well as the doctor’s contact information. Ensure that you pack your health insurance card/information, any additional traveler’s insurance information, your list of doctors/hospitals/pharmacists in your travel destination, current medications, and any medical supplies you may need. Trust your instincts. Research and understand emergency symptoms that require immediate medical attention in an IBD patient. Be smart and be safe!
 
Tip #10: Have fun!
Finally, the last tip is to have fun traveling! If your trip is a planned family vacation or special trip, take the time to enjoy it! You, and your child, will be able to relax and enjoy the trip more if you take the time to do your research and plan in advance for the unexpected. Remember, traveling with IBD requires preparation, but it's entirely manageable with the right approach. By following these tips and embracing the adventure, you and your child can explore the world with confidence and experience the joy of travel while managing your child’s condition effectively.
 
Hopefully, the information on this page gives you a little more confidence in your ability to travel with your child with IBD. With the right knowledge and support, you can enjoy your journey with confidence, explore new places, and create lasting family memories! If you would like more information or support, feel free to email me or contact another member of the IBD Connect team through our main website. My email address is linked below. If you are interested in connecting with a support group to discuss topics like this one more thoroughly and gain some practical insight, feel free to click the link below for more information ! Finally, I would just like to give one final reminder not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Stay strong IBD Warrior families, and safe travels!  
IBD Connect Main Website
IBD Connect Support Groups
Emily's Email
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<![CDATA[Parenting a Child With IBD: An Interview With IBD Connect's Founder]]>Fri, 25 Aug 2023 04:00:00 GMThttp://ibdconnectinc.org/blog/parenting-a-child-with-ibd-an-interview-with-ibd-connects-founder
If you read the last blog post, you’re familiar with Bryce’s story. In the previous post, Bryce was interviewed for his perspective on growing up with a sibling diagnosed with IBD. He actually has two sisters with Crohn’s disease, and one of them was diagnosed at a very young age. Because of this, IBD was considered to be a normal, consistent part of his childhood from the time he was six years old. Some of the topics that were discussed in his interview include: the impact IBD had on his sibling and parent relationships, how IBD affected his family’s day-to-day activities, and the overall culture of his home during periods of high stress. If you would like to read his interview, you can click the link at the bottom of this page. For this blog post, we will be continuing our discussion on the impact IBD can have on family life. This time, however, Bryce’s mother Lisa will be the one answering the questions! Lisa Fournier is the founder of IBD Connect Inc. She is the mother of two children diagnosed with Crohn’s disease, one diagnosed at the age of four, the other diagnosed at age twenty-eight. Whereas Bryce provided his unique insight as a sibling to a diagnosed child, in this interview, Lisa provides insight into her perspective as a mother. She also discusses how she came to create and expand IBD Connect. This is an interview you will not want to miss! Let’s dive in. 

Can you please introduce yourself? Give us a little bit of background about who you are!
So, my name is Lisa Fournier, formerly Lisa Lataille. I grew up in Woonsocket, RI, the 4th child of a family of 5. I graduated from Rivier College in Nashua, NH, moved to Las Vegas, NV for a bit and then settled in Uxbridge, MA. I am the proud mother of  4 amazing children (5 with our adult adoptee) and have 5 grandchildren. Family is the very center of my life and I love spending time with all of them. I work as an accountant/operations manager and in my spare time, I work with families through IBD Connect. 

Why did you decide to start a nonprofit organization for IBD? How did IBD Connect begin? Why did you choose the name IBD Connect Inc.? 
Going through life with a child living with Crohn’s Disease is a very difficult journey, for the patient and for the entire family as well. I had searched for a support group for my daughter Randi when she was about 14 years old. She had been diagnosed with Crohn’s Disease at the age of 4 and was struggling with social interactions. Children did not understand what IBD is or how it impacted a life. She often felt different from the other kids and I wanted her to be able to connect with others who were on the same path. I could not find a local support group so I decided to start one. It became extremely successful and I thought about how many other ways I could begin to help families living with IBD. I also discovered that the families were bonding beyond the meetings and the connections were becoming a vital part of a patient’s family life. Everyone truly understood what the others were going through. I decided to start IBD Connect so that I could expand the manners in which I was serving the IBD community. I struggled with so many issues along the way with my own journey with Randi that I thought it could benefit other families to have the information and resources that I did not. I did a bit of research about starting a non-profit and decided to jump in. It has been an amazing journey, not without bumps in the road and mistakes, but amazing nonetheless. The name IBD Connect stems from what was the most important to me along the way, which are the connections that I made. To have a person you can turn to who understands your particular role in this journey is a priceless connection. 

Let’s talk about being a parent to a child with IBD and take a trip down memory lane. Can you briefly share your journey of discovering that Randi has IBD? How did you feel during the initial diagnosis process? What were your immediate concerns and fears?
Randi began her struggles with IBD at a very young age. She had issues with bowel movements from the time she was a toddler. When she was about 4 years old, she would have frequent bouts with bloody stools and awful cramping. The bloody stools were not just a few drops of blood, she would often fill the entire toilet with blood. It was extremely scary to say the least. Her pediatrician recommended a pediatric GI and our journey began. She had her first colonoscopy at the age of 4. It took a while to get a firm diagnosis as she was so young and there were not too many cases of children her age being diagnosed. I was terrified because some of the other illnesses that they questioned were life threatening. Once we received her diagnosis, it took a while for the concept that it was chronic to sink in. My initial reaction was to want to give her medication to “cure” her. Since it is 21 years later, I think we all know how that turned out!

How did your family as a whole react emotionally when you received the diagnosis of IBD?
It was difficult for everyone to understand not only the “what” of IBD but the “why” of it as well. Bryce, who is only a couple years older than Randi, was too young to really understand, but Nick and Jaimee, who were older children at the time, understood. They were so amazingly helpful and empathetic. I think they were scared for her as this was definitely unchartered territory for all of us. 

Randi was diagnosed with IBD at such a young age. You also had three older children to care for. How did you navigate balancing the needs of your child with IBD with the needs of your three other children? Do you have any practical tips for parents who may feel as though they are constantly juggling with this tension? How did you maintain a sense of normalcy and fairness within the household?
This is probably the most difficult part of a child with an illness. Although my other children were wonderful about it, the parental guilt of not giving everyone equal attention is really hard. There were times I remember angry moments from them when things had to change or be limited by what Randi could do. Everything seemed to be planned around her needs, and there is definitely a resentment that happens with that. I did try to give one on one time with each child when I could, even if it was just a pizza date or a trip to the store together. There really isn’t a total fairness with regard to time, no matter how hard you try. I do remember telling them all that if it was one of them, I would be doing the exact same thing for them. It had nothing to do with it being Randi, it had to do with trying to maneuver this illness. Being honest really helps. Although the others may not have always liked it, I did my best to help them understand. 

Parenting a child with a chronic illness can be emotionally taxing. What self-care strategies did you, or do you, practice to ensure your own well-being and mental health?
Good question. I don’t think I focused enough on this. I feel like I spent so many years in survival mode. There were so many nights that I would just go to bed so exhausted and glad to be successfully through another day. It definitely takes a toll on your own personal well-being as a parent and an individual. What did help my mental health was the fact that the support group families were so amazing. Being able to share the journey with other parents in the same situation keeps you sane.  

Could you share some of the biggest challenges you've faced as a parent of a child with IBD? How have you overcome these challenges or adapt to them?
There are so many facets of challenges for parents of a child with IBD. There are physical challenges, emotional challenges, financial challenges. The physical challenge ends when they take over their own health care as adults. The unending trips to the doctor, hospital, etc become their challenge at that point. The same can be said for the financial challenge. When they learn to maneuver the insurance and expenses, those become their challenges. The emotional challenge never goes away. When Jaimee was diagnosed at 28 years old, I had that same emotional reaction as I did when Randi was diagnosed at 4. It truly comes from loving them so much and not wanting to see them ill. It is a process to learn to let go of part of that. I still have moments when I want them to come home so I can cook the foods that I know soothe their body and soul. But they are adults and I relish seeing them continue their care.

Can you share some heartwarming or positive moments that have emerged from your experience as a parent of a child with IBD? How has this journey brought your family closer or taught you valuable life lessons?
There is so much positivity that can come from my situation. First, my family is amazingly close. We know how much we value each other and that is truly a blessing. Having to depend on each other is not necessarily a bad thing. It taught us resiliency, how to make the best of situations, and how to be flexible when we had to. Our family never hid the illness, we chose to make the best of it by advocating and raising awareness. We have met so many wonderful people along this journey and for that, we are all grateful.

For parents who are new to the journey of raising a child with IBD, what advice or words of encouragement would you offer based on your own experiences?
First and foremost, I would encourage them to try to take it one day at a time. Each day is different and you need to learn to celebrate the small wins. It is an up and down path, some periods of time are easier than others. If you are struggling with a portion of it, reach out to another parent, family member or someone familiar with the illness. There is help out there, but you have to seek it. Most importantly, don’t let a diagnosis ever stop your child from achieving their goals. Accommodations may help, excuses do not. The path may be different than either of you planned, but it is always achievable.

Finally, what is your ultimate goal for IBD Connect? What do you see for the future of this nonprofit organization? What would you like people to know about IBD Connect?
My goal for IBD Connect is to continue to reach families all over the country and help them maneuver this journey. Whether it be through a support group, a financial resource, or even a connection that forms a bond, we have something to help. I would like to expand some of the financial programs so that more families can take advantage of them and reach out into more hospitals with our products and services. IBD Connect is my way of serving the IBD community by ensuring that “no IBD patient ever feels alone.”

This concludes our interview with Lisa. It is my hope that her honest, raw answers are able to give you some comfort and hope as you navigate your own family’s unique IBD journey. If you are looking for more information or would like to receive support, please feel free to contact me or another member of the IBD Connect team. My email is linked at the bottom of this page. Additionally, even though today’s post was not clinically heavy, I still want to remind everyone not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Before we wrap up this post, I want to give a huge thank you to IBD Connect’s founder for her willingness to participate in this interview! Lisa’s empathy, compassion, and drive are what has grown IBD Connect to be able to serve over seventy families in several different states. She truly wants you and your family to feel loved and supported in this journey. On that note, stay strong IBD Warriors/IBD Warrior families!
IBD Connect's Main Website
IBD Connect Support Groups
Emily's Email
Family Ties: An Interview With an IBD Sibling
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<![CDATA[Family Ties: An Interview With an IBD Sibling]]>Fri, 11 Aug 2023 04:00:00 GMThttp://ibdconnectinc.org/blog/family-ties-an-interview-with-an-ibd-sibling
Perhaps you are a parent to multiple children, one with IBD, and you are wondering how your child’s IBD diagnosis will impact your family unit. How will the diagnosis impact your family’s culture, values, or day-to-day activities? How will your child’s IBD diagnosis impact sibling relationships? Or individual parent-child relationships? How will you know which child may need your attention the most in any given moment? The answers to these questions are different for every family because every family is different! However, it may be beneficial to gather resources or hear from other individuals in similar situations to help guide you to making informed, intentional decisions for your family. On this page, you will find an interview I completed with my husband, Bryce Fournier. Bryce has two sisters with Crohn’s disease, and one of them was diagnosed at a very young age. In this interview, Bryce gives some insight into his experience growing up as a sibling of an IBD patient. Even if you are unable to directly apply anything you may read in this interview to your unique family situation, it is my hope that you are still able to take some comfort from Bryce’s words. Family relationships can still thrive with an IBD diagnosis! Please, enjoy the interview.
 
Can you please introduce yourself? Give us a little background about who you are and your connection to IBD Connect! 
Sure. My name is Bryce, and I have close ties to IBD Connect through my family. I'm the son of Lisa, the founder and president of IBD Connect, and I'm married to Emily, IBD Connect’s blog writer and media director. My hobbies include working out, spending time with my family, and reading about theology. In my professional life, I'm a behavior analyst working in special education with children who have autism in a public school setting.
 
Can you please tell us a little more about your relationship with your siblings? Overall, what did your childhood look like? 
Of course, I'd be happy to share more about my relationship with my siblings and my childhood experiences. I come from a family of four siblings: an older brother named Nick, an older sister named Jaimee, and a younger sister named Randi. Both of my sisters have been diagnosed with Crohn’s disease. Looking back on my childhood, I have fond memories of spending quality time with my siblings, particularly with Randi. Because my older siblings Nick and Jaimee are considerably older, being 9 and 7 years older respectively, I often hung out with Randi, who is just 2 years younger than me. We frequently had friends over and enjoyed each other's company. Randi's diagnosis occurred while we were both still very young, so her journey with IBD was always a part of our family's narrative. Jaimee, on the other hand, was diagnosed as an adult, well after we had all moved out of our parents' home.
 
Randi was diagnosed with Crohn’s disease when you were both very young. Do you remember a specific moment in which you first learned about her diagnosis? What were your thoughts and feelings at this time? How did your family handle the news overall? If you don’t remember a specific moment in time, do you remember the general culture of the home around the time of Randi’s diagnosis? 
As you mentioned, Randi's diagnosis with Crohn’s disease came about when we were both quite young. I believe I was around six years old when Randi officially started her journey with IBD. While I can't recall an exact moment when I was told about her diagnosis, I do recall that there was an overall sense of stress and tension within our home around that time. I could definitely sense that something was wrong. I remember that each of our family members tried to work through the hurt and the confusion of the shocking diagnosis in their own way. My mom, Lisa, immersed herself in researching and studying the medical literature related to IBD. She was frequently communicating with medical staff at doctor’s offices and hospitals. My dad, Clay, was more inclined to research holistic and natural remedies for Crohn’s disease, exploring alternative treatment options. Because I was so young, I really don’t remember a time in which Randi didn’t have Crohn’s disease. I never thought of her as different or frail. To me, Randi was just my sister! I knew that Randi needed the bathroom more frequently and that she was frequently fatigued and not feeling well.
 
What kind of support did you and your family provide to Randi during flare-ups or challenging times? How did this affect your own experiences?
When Randi experienced flare-ups, I recall her requiring a considerable amount of attention from my parents. My parents remained dedicated to managing her medications, arranging doctor's appointments, making hospital visits, and monitoring her restroom needs. Even during periods of remission, we were vigilant about locating nearby bathrooms wherever we went, prioritizing this aspect. Our outings were strategically planned around meal and medication schedules to proactively address and alleviate potential flare-ups.
 
Were there any specific moments or experiences that stand out to you as particularly challenging or significant while growing up with a sibling with IBD?
Of course! As a child, I was never particularly needy for attention. Generally speaking, I was content playing individually or entertaining myself with toys or activities. That being said, I sometimes did feel as though Randi seemed to be the center of my parents’ attention. These moments were more palpable during flare-ups, extensive hospital trips, or periods in which Randi was feeling especially fatigued/ill. As an adult, I now understand that my parents needed to prioritize Randi’s medical needs during these times. I understood that as a child to some extent as well, and I did recognize that my parents genuinely tried to balance Randi’s needs with my needs. That did not make it any less difficult as a small child, however. I also feel as though I had trouble comprehending the true extent of Randi’s medical needs, especially during flare-ups. I sometimes struggled with rearranging our schedule or changing plans due to the unpredictable nature of Crohn’s disease.  
 
How did you manage to balance your own needs and emotions with the demands of supporting Randi’s health and well-being? Did you ever feel any jealousy or resentment towards the attention Randi received due to IBD? 
Managing my personal needs and emotions alongside supporting Randi's health and well-being required a delicate balance. There were moments where I grappled with feelings of resentment, as I previously mentioned. Nevertheless, I wasn't overly preoccupied with seeking attention during my childhood. My parents skillfully ensured that even when Randi was hospitalized or feeling unwell, one of them would be available to spend time with me and provide the necessary attention. Additionally, my older siblings, particularly my sister, played a significant role in entertaining and engaging with me while I was young.
 
Were there any misconceptions or misunderstandings about IBD that you encountered while interacting with friends, peers, or others outside your family? How did you handle these situations?
When interacting with friends, peers, or others outside my family, misconceptions about IBD did arise. Not among my friends, but I distinctly remember encounters where other individuals outside our family believed that adopting a new dietary trend could miraculously resolve Randi's challenges, or they trivialized the gravity of her Crohn's by simplifying it as a mere bathroom concern. I didn't handle these instances directly as a child, as one of my parents would usually step in. If I were to address them now, I'd aim to strike a balance between rectifying these misunderstandings and maintaining a positive, informative tone. I recognize that people generally mean well, yet there's a need to educate about the reality of IBD. I might suggest referring them to resources like IBD Connect and Emily's Gut Check for accurate information. While I was growing up, I never felt as though there was any tension or stress about IBD with my friendships. Both Randi’s friends and my friends were at our house often. I feel as though they absorbed a lot of information about IBD just by being immersed in our home. Because Randi was diagnosed at such a young age, both of our friends grew up with a pretty accurate understanding of IBD from a young age. We never tried to hide anything about IBD from our friends, and we would answer any questions they may have had openly and honestly.

​Overall, how do you feel as though Randi’s diagnosis impacted your childhood experience? Did you experience any stress or anxiety related to Randi’s condition?  

Reflecting on my childhood, Randi's diagnosis did impact my experiences. The urgency to locate restrooms whenever we ventured out and the tension during flare-ups or unfamiliar outings stand out as sources of stress. Despite this, I don't believe I missed out on childhood pursuits due to Randi's IBD. Our parents made considerable efforts to ensure both of us had fulfilling experiences. Early on especially, the stress was palpable but manageable for our family.
 
In what ways has Randi’s, and now Jaimee’s, resilience and strength in facing IBD influenced or inspired you?
It has inspired me to be an advocate for those suffering from illness or disability. I feel as though much of the reason I am drawn to working with children with autism and advocating for them is because I saw my parents doing this with Randi and her IBD. Her experiences, especially with all the misconceptions and stigmas about the disease, highlight the need to advocate to spread accurate information, reduce stigmas, and provide support to those suffering. Seeing her do this, as well as my mom through IBD Connect, has definitely left its mark on me.
 
What advice would you give to other siblings who are currently navigating similar challenges with a sibling diagnosis of IBD? What advice would you give to parents of multiple children, one child having a diagnosis of IBD?
To fellow siblings navigating the challenges of a sibling's IBD diagnosis, I'd advise them to educate themselves about the condition. This knowledge will enable them to offer effective support and foster greater empathy. Listening, communicating, and expressing empathy to the sibling with IBD is crucial, creating a peer-based bond that complements parental support. Flexibility and practical assistance during flare-ups or medical appointments also goes a long way. Emotional support is equally vital. Lastly, maintaining one's own well-being is essential. While the demands of the sibling with IBD can be consuming, spending time with family and friends during the sibling's healthy periods helps preserve emotional balance.
 
For parents with multiple children, one diagnosed with IBD, I'd encourage open communication among all siblings. Avoid becoming so engrossed in managing the child's IBD that the other siblings' needs are overlooked. Offering individual attention to all children and diversifying the interactions with the sibling with IBD, beyond the context of the condition, is beneficial. Building a unified family environment that nurtures empathy and validates emotions is essential. Initiating family time unrelated to IBD serves as a strong foundation for this approach.
 
This concludes our interview. It is my hope that you are able to find some peace knowing that Bryce currently has healthy relationships with his parents and siblings. An IBD diagnosis in the family is certainly a challenge, but it is possible to work together as a family unit to overcome these challenges by communicating feelings and needs with one another. If you are looking for more information or would like to receive support, please feel free to contact me. My email is linked at the bottom of this page. Even though today’s post was not clinically heavy, I still want to remind everyone not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Before we wrap up this post, I want to give a huge shout out to Bryce. His eagerness to participate in this interview speaks volumes about the heart he has for supporting this cause! And as always, stay strong IBD Warriors/IBD Warrior parents!
IBD Connect Main Website
IBD Connect Support Groups
Emily's Email
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<![CDATA[IBS vs IBD: What are the Similarities and Differences?]]>Fri, 28 Jul 2023 04:00:00 GMThttp://ibdconnectinc.org/blog/ibs-vs-ibd-what-are-the-similarities-and-differences
Have you ever been explaining your child’s IBD diagnosis to a friend or family member only to receive the reply, “I totally understand what you guys are going through. I have IBS!” You may be frustrated by this response because you know that there are major differences between IBD and IBS. In fact, you can start rattling off a whole laundry list of differences! Or, perhaps you understand that IBS and IBD are two different disorders, but you are not quite sure what the differences are. After your child’s diagnosis, you may feel confident in your understanding of IBD, but what really is IBS? Are there any commonalities between the two disorders? What does IBS even stand for anyways? However you may be feeling in this situation, whether you are angry, annoyed, hurt, or confused, your response to this type of comment matters. You can choose to view moments like these as unique opportunities to spread IBD awareness by politely imparting your knowledge. Remember, common misconceptions are shattered one individual at a time! It is possible to respectfully share knowledge and build a strong connection without belittling or demeaning the individual or their disorder. This page is intended to arm you with some basic knowledge about IBS and IBD, taking care to highlight the similarities and differences between the two disorders.
 
Before we dive into the content, please note that this page is not intended to be a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Additionally, please note that this page provides a brief overview of IBS and IBD and does not discuss these disorders in great detail. If you have any specific questions pertaining to either of these disorders you can always speak with your child’s doctor or another healthcare professional. Now let’s begin!
 
IBS
 
What is IBS?
Irritable bowel syndrome, or IBS, is a functional gastrointestinal disorder characterized by chronic abdominal pain or discomfort and alteration of bowel patterns.[i] Diarrhea or constipation may predominate or alternate. The symptoms of IBS can range from mildly annoying to chronically debilitating, impacting overall quality of life, social life, and an individual’s ability to work or travel. Individuals with IBS may feel less able to take part of normal, daily activities. IBS is fairly common, as it is estimated that around 12% of the United States population has been diagnosed with IBS.[ii] In the past, medical professionals have referred to IBS as IBS colitis, colitis, mucous colitis, spastic colon, spastic bowel, and nervous colon. The antiquated terms “IBS colitis” and “colitis” should not be confused with ulcerative colitis, one type of IBD. The older terminology certainly can contribute to the confusion between IBS and IBD! Unlike IBD, IBS does not cause any digestive system damage, as it is largely a disorder of gut/brain interaction.[iii]
 
What are the Symptoms of IBS?
Common symptoms of IBS include:
  • Chronic/persistent abdominal pain
  • Mucus in the stool
  • Gassiness/flatulence
  • Abdominal bloating or abdominal distention
  • Sensation of feeling full
  • Change in stool frequency
  • Change in stool appearance
  • Nausea
  • Urgency
  • Sensation of incomplete evacuation
  • Non GI symptoms: fatigue, headache, sleep disturbances
 
What Causes IBS?
Just like with IBD, the exact cause of IBS is unknown. Psychological stressors, such as depression, anxiety, physical/sexual abuse, and PTSD, are associated with the development and exacerbation of IBS symptoms. However, there is a significant amount of researching pointing to the fact that IBS is a disorder caused by a disturbance between the brain and the gut, [iv] meaning that there are poorly coordinated signals between the brain and the intestines. This can cause the body of an individual with IBS to “overreact” to the typical digestive process, leading to many of the common IBS symptoms. Additionally, individuals with IBS typically have overactive muscle contractions in the intestines. The walls of the intestines are lined with layers of muscle, and the contractions of these muscles help to move food through the digestive tract. In an individual with IBS, the contractions can last longer and be stronger, which can lead to several different IBS symptoms. There is some research looking into mental health/stress, severe GI infections, food allergies, and changes in gut microbes as potential causes or contributors to the development of IBS. More research is needed in this area.
 
How is IBS Diagnosed?
IBS is diagnosed based on the symptoms of the patient and the elimination of other disorders/causes. IBS cannot be confirmed by imaging or other diagnostic tools, as is the case with IBD, however these tools can be used to eliminate other disorders as the root cause of symptoms. Thus, blood tests, stool tests, x-ray, and/or endoscopy/colonoscopy may be ordered to rule out other disorders (e.g. colorectal cancer, IBD, endometriosis, lactose intolerance, celiac disease, etc.). Once these disorders are ruled out, IBS is diagnosed using the Rome IV criteria. This requires that the patient have recurrent abdominal pain on average at least 1 day per week during a 3 month period that is associated with two or more of the following:
  • Related to defecation
  • Change in stool frequency
  • Change in stool form/appearance[v]
 
How is IBS Treated?
No single therapy is effective for all IBS patients. Treatment is different for everyone but may include psychological therapy/changes, dietary and lifestyle changes, and/or medication therapy.
  • Psychological: Cognitive behavioral therapy and stress management techniques may help a patient to cope with any psychological factors that may be exacerbating IBS symptoms.
  • Lifestyle changes: Regularly exercising may help to reduce bloating and constipation, as well as improve psychological factors that may be contributing to IBS symptoms. Many individuals with IBS find that following a special diet, such as a low FODMAP diet, can be very effective at reducing and managing symptoms. For those with constipation, an adequate fiber intake is necessary. Some individuals find that reducing dairy in their diet shows improvement in their IBS symptoms.
  • Mediations: In severe cases of IBS, medications can help to reduce symptoms. Medication therapy is highly individualized for patients with IBS. There is no one medication that is most effective or works well for every single IBS patient.
 
IBD
 
Chances are that if you are reading this page, you are intimately familiar with what inflammatory bowel disease, or IBD, is. For this reason, we will only briefly discuss IBD in this post. For more detailed information on IBD, including the difference between Crohn’s disease and ulcerative colitis, please feel free to refer to my “What is IBD?” blog post. The link is at the bottom of this page. For the purposes of this post, the following information on IBD will be brief and will not dive into too much detail.
 
What is IBD?
Inflammatory bowel disease (IBD) is defined as a chronic inflammation of the GI tract.[vi] In an individual diagnosed with IBD, the body is triggered to produce an exaggerated, inappropriate immune response that results in GI tract inflammation. IBD is therefore considered to be an autoimmune disease. The resulting prolonged inflammation can cause tissue destruction and damage to the GI tract. IBD is characterized by periods of remission and periods of exacerbation.[vii]
 
What are the Symptoms of IBD?
Some of the common symptoms of IBD include:
  • Persistent diarrhea
  • Weight loss
  • Fatigue
  • Abdominal pain
  • Bloody stools
 
Please note that this is not a comprehensive list of all IBD symptoms. Additionally, there are some differences in symptoms between the two types of IBD. For example, weight loss is more common in those diagnosed with Crohn’s disease, whereas bloody stools are more prevalent in those diagnosed with ulcerative colitis.[viii]
 
Unlike IBS, IBD patients can experience many different complications related to their disease.
 
Local complications can include:
  • Hemorrhage
  • Strictures
  • Perforation
  • Abscesses
  • Fistulas
  • C. difficile infection
  • Toxic megacolon
 
Systemic complications can include:
  • Skin, eye, and joint inflammation
  • Mouth ulcers (in those with Crohn’s disease)
  • Gallstones
  • Kidney stones
  • Liver disease
  • Osteoporosis
  • Blood clots
  • Dehydration
  • Malnutrition
 
What Causes IBD?
Unfortunately, the exact cause of IBD is unknown. However, we do know that the disease is a result of a weakened immune system.[ix] In a patient with IBD, the individual’s immune system develops an overactive, inappropriate immune response to the body’s own GI tract.[x] The most widely believed theory is that IBD is the result of an environmental trigger that causes an inappropriate, uncontrolled immune response in a genetically prone individual.[xi]
 
How is IBD Diagnosed?
In order to diagnose IBD, a full history of symptoms and a physical examination will need to be completed by the doctor. After all other conditions are ruled out, IBD is usually diagnosed based on certain tests, such as endoscopy, enteroscopy, sigmoidoscopy, and/or colonoscopy. Imaging studies (X-ray/CT/MRI) are sometimes necessary and can also be useful in diagnosing IBD.
 
How is IBD Treated?
There is no cure for IBD, but there are several different methods of IBD treatment, all with the goal of achieving and maintaining remission. These methods of treatment are:
  • Medications
    • Anti-inflammatory drugs
      • Aminosalicylates
      • Corticosteroids
    • Immune system suppressors 
    • Biologics
    • Antibiotics
    • Anti-diarrheal medications
  • Surgical therapy
  • Nutritional therapy
  • Rest
  • Counseling and/or support group if desired
 
To summarize what was discussed on this page, please feel free to refer to the Venn Diagram included in this post. This diagram is not an exhaustive list of all the similarities and differences between IBS and IBD, but does highlight some of the key points discussed in this post. As mentioned above, if you have any questions or want to discuss this matter further, please contact your child’s doctor or other healthcare professional. It is my hope that this page provided you with a basic overview of the commonalities and vast differences between IBS and IBD. The next time that someone tries to compare IBD to IBS, remember that you have the opportunity to start shattering the misconception that these disorders are the same thing. You have the ability to kindly impart your knowledge in a gentle and loving way, without making light of anyone’s disorder or pain. As always, stay strong IBD Warrior parents!

[i] Lewis, Sharon et al., Medical-Surgical Nursing: Assessment and Management of Clinical Problems (St. Louis, Missouri: Elsevier, 2017), 940

[ii] Chey WD, Kurlander J, Eswaran S. Irritable bowel syndrome: a clinical review. Journal of the
American Medical Association. 2015;313(9):949–958.

[iii] Definition and Facts for Irritable Bowel Syndrome

[iv] Definition and Facts for Irritable Bowel Syndrome

[v]  Lewis, 940

[vi] Lewis, 944.

[vii] Lewis et al., 944.

[viii] Lewis, 946.

[ix] Centers for Disease Control and Prevention, What is Inflammatory Bowel Disease?

[x] Lewis, 944.

[xi] Alatab et al.

Bibliography 

Alatab, Sudabeh, Sadaf G Sepanlou, Kevin Ikuta, Homayoon Vahedi, Catherine Bisignano, Saeid Safiri, Anahita Sadeghi, et al. “The Global, Regional, and National Burden of Inflammatory Bowel Disease in 195 Countries and Territories, 1990–2017: A Systematic Analysis for the Global Burden of Disease Study 2017.” The Lancet Gastroenterology & Hepatology 5, no. 1 (2020): 17–30. https://doi.org/10.1016/s2468-1253(19)30333-4.

Chey WD, Kurlander J, Eswaran S. Irritable bowel syndrome: a clinical review. Journal of the
American Medical Association. 2015;313(9):949–958.

“Definition & Facts for Irritable Bowel Syndrome - NIDDK.” National Institute of Diabetes and Digestive and Kidney Diseases. U.S. Department of Health and Human Services. Accessed April 6, 2023. https://www.niddk.nih.gov/health-information/digestive-diseases/irritable-bowel-syndrome/definition-facts.

Lewis, Sharon Mantik, Linda Bucher, Margaret McLean Heitkemper, and Mariann M. Harding. Medical-Surgical Nursing: Assessment and Management of Clinical Problems. St. Louis (Miss.): Elsevier, 2017.

​“What Is Inflammatory Bowel Disease (IBD)?” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, April 13, 2022. https://www.cdc.gov/ibd/what-is-ibd.htm.  
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<![CDATA[The Importance of a Healthy Diet for Children with IBD]]>Fri, 14 Jul 2023 04:00:00 GMThttp://ibdconnectinc.org/blog/the-importance-of-a-healthy-diet-for-children-with-ibd
​You hear it all the time. The importance of a healthy diet. Aphorisms like “An apple a day keeps the doctor away,” “You are what you eat,” and “Food is fuel” circulate like wildfire within popular culture. You know that a healthy diet is important, and you know the basics of what constitutes a healthy diet. You’ve seen MyPlate images online depicting healthy portions of proteins, grains, dairy, fruits, and vegetables. You know that you should try to incorporate these food groups into each meal you serve your child. You know that in a general sense, it is better to serve more single ingredient/unprocessed foods than processed foods. If your child is diagnosed with IBD, however, you may be wondering if any of this translates to how you should be feeding and nourishing your child. Do the basic principles of a healthy diet still apply to your diagnosed child’s diet? How will preparing your child’s meals differ post diagnosis? Should it? Is there one right way to feed your child? What does feeding your child with IBD look like practically? By feeding your child a certain way, did you cause your child’s IBD diagnosis? This page will attempt to answer some of these questions, or at the very least, bring to light some information about the functional relationship between inflammatory bowel disease and diet.
 
Before we dive into the content, please note that this page is not intended to be a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Additionally, while I am a registered nurse, I am not a registered dietician. This page is intended to be used to communicate generalized information regarding the role of diet in the life of a diagnosed IBD patient. I do not know your child’s individualized diet needs. For more specific questions related to your child’s unique diet and treatment plan, please refer to your child’s doctor, as well as a registered dietician if/when appropriate. Now let’s begin!
 
Does Diet Cause IBD?
A common misconception is that diet is the direct cause of IBD development. Please understand that your child was not diagnosed with IBD because you fed him or her a certain food or meal. Unfortunately, the exact cause of IBD is unknown. We do know, however, that the disease is a result of immune system dysregulation. In a patient with IBD, the individual’s immune system develops an overactive, inappropriate immune response to the body’s own GI tract.[1] The most widely believed theory is that IBD develops after continued exposure to environmental triggers. These exposures spark the inappropriate, uncontrolled immune response in a genetically prone individual.[2] Some of the different environmental triggers that have been explored are infection, exposure to smoke, medication use, pollution, climate change, hygiene, and diet. While diet is not the direct cause of IBD, there are some studies that seem to suggest that diets containing a high amount of fiber, particularly from fruits, may lower the risk of developing Crohn’s disease, but not ulcerative colitis.[3] There is definitely a need for more research on the relationship between diet and IBD, but it is important to remember that although there may be a small association between diet and IBD, diet is not the cause of diagnosis. There are several factors that lead to the diagnosis of IBD.
 
Why is Diet So Important for an IBD Patient?
As mentioned earlier, a healthy diet is important for everyone, but it is particularly crucial for children with IBD. Research has shown that a well-balanced diet can contribute to achieving and maintaining remission, reducing IBD symptoms, and improving overall nutritional status. Additionally, diet can play a role in improving immune function and nutrient absorption to better support growth and development.
 
What Should My Child Eat After Diagnosis?
The best piece of advice I can give you is to work closely with your child’s doctor and/or an IBD-focused registered dietician to assist you in developing a personalized diet plan for your child. This plan would be individualized to your child’s specific nutritional needs, factoring in diagnosis (i.e. Crohn’s disease versus ulcerative colitis), status of disease (active or in remission), location and extent of disease, and any current symptoms your child is experiencing. Please note that there is not one single eating plan that works well for every individual diagnosed with IBD. There is not a magic formula or a magic diet for IBD. Every IBD patient has unique nutritional needs, and it is recommended that you work closely with your child’s healthcare professionals to ensure that your child is receiving individualized nutritional care.
 
That being said, here is a bulleted list of general tips for feeding your child with IBD. These tips are meant to give you a birds-eye view of the role of diet in regards to IBD. They are applicable to a general audience, but you should always follow the advice of your child’s doctor or registered dietician for a more specific nutritional plan pertaining to your child. This is especially true if you child is placed on a specialized diet (e.g. low FODMAP diet, Crohn’s disease exclusive diet, anti-inflammatory diet, etc.).
 
  • Minimize trigger foods:
    • Trigger foods are simply foods that cause your child to experience discomfort. Trigger foods do not necessarily cause inflammation in your child’s GI tract, but they can cause some pretty unpleasant symptoms. Every IBD patient will have different trigger foods.
    • Common trigger foods include:
      • Foods high in insoluble fiber (bran, nuts, sunflower seeds, apple skins, etc.)
      • Foods high in fiber (cabbage, broccoli, beans, cauliflower, etc.)
      • Foods high in lactose (cow’s milk, ice cream, etc.)
      • Foods high in sugar (cookies, pastries, maple syrup, etc.)
      • Fried foods/high fat foods (butter, fried chicken, etc.)
      • Spicy foods
      • Caffeinated beverages
  • Minimize foods that can increase inflammation:
    • Certain foods, such as red meats, have been linked to increasing overall inflammation when consumed frequently over a long period of time. Moderation is key!
  • Increase foods linked to decreased inflammation:
    • Focus on increasing foods that are linked to decreasing inflammation, including fruits and vegetables, foods high in omega 3 fatty acids (fatty fish, chia seeds, flaxseed, etc.)
  • When your child is in flare:
    • If your child is in flare, focus on increasing fluids and increasing protein (lean meats, beans, yogurt, chia seeds, etc.). If your child’s appetite has decreased while in flare, focus on nutrient-dense snacks offered frequently throughout the day, rather than big meals.
    • For example, you may be able to offer your child a smoothie packed with fruits, veggies, and chia seeds. Another snack option could be a banana with a spoonful of peanut butter. Over time, you will find what works best for you and your child.
  • When your child is in remission:
    • When your child is in remission, focus on offering a wide variety of foods to ensure that your child is receiving a well-balanced diet. You should still be mindful of trigger foods, as well as foods that tend to cause inflammation over a longer period of time.
 
Practical Tips
You may be wondering how the above information translates into real-life scenarios. How can you apply what you just read in a practical way to meet the nutritional needs of your child? Here are some tips to help you deconstruct the above information and integrate it into your child’s day-to-day life.
  • Keep a food log/diary. Keeping a tangible record of what your child eats throughout the day, as well as any symptoms your child is experiencing, is a very effective strategy to identity trigger foods and track the nutritional status of your child. In keeping a food journal, you may notice that your child actually consumes a fraction of the amount of recommended vegetables throughout the day. Or you may identity that honey, a very sugary food, is one of your child’s main trigger foods. A food log is an especially helpful tool to your child’s doctor or registered dietician. He or she can review the log and identity and discuss any nutritional gaps that may be missing from your child’s diet. A registered dietician can also use the information recorded in a food log to help curate your child’s unique diet plan.
  • Prepare meals in advance. It may be helpful to prepare meals in advance. You may even consider freezing some meals. Planning/preparing meals in advance provides you with a greater chance of sticking to your child’s diet plan and recording foods/symptoms in your child’s food diary.
  • Keep your kitchen well stocked. Try to keep your kitchen well stocked with snacks and ingredients for meals you know will not be triggering for your child/lead to inflammation.
  • Plan for those nights. You know those nights. I’m talking about the nights when you are too tired to cook dinner or you run out of freezer/prepared meals. Have a few meal ideas in your head that you can fall back on in a pinch. Ideally, these meals are quick, easy, and adhere to your child’s diet restrictions. Keep the ingredients for these meals well stocked in your home for these types of nights.
  • Plan for meals outside of the home. Look up menus to restaurants ahead of time if possible! If you are gathering at someone else’s home, you can always bring your own meal for your child, or discuss the meal ingredients with the host of the gathering if you are comfortable.
 
Other General Tips:
  • Make sure your child is well hydrated. Offer plenty of fluids! Your child’s urine should be pale yellow and clear, not dark yellow/amber.
  • Ask your child’s doctor about consulting with a registered dietician.
  • Consult your child’s doctor for vitamin/supplement recommendations.
  • Give yourself some grace. Preparing IBD-friendly meals is no easy feat. Remember, it is more important to focus on your child’s overall diet/eating patterns, rather than one specific snack, meal, or day.
  • As your child ages, be mindful of their behaviors towards food and be on the lookout for disordered eating or restrictive eating. Please seek help from a professional if necessary.
 
Malnutrition
Both Crohn’s disease and ulcerative colitis impact your body’s ability to properly absorb nutrients from ingested food, which means there is a greater risk of malnourishment. Be mindful of signs and symptoms of malnutrition in your child. Should you observe any signs of malnutrition, you should contact your child’s doctor immediately to prevent long-term complications, such as delayed growth, stricture, and decreased bone density. You can discuss any potential nutritional gaps with your child’s doctor or a registered dietician. Some of the more noticeable signs of malnutrition include:
  • Fatigue and/or low energy
  • Decreased muscle mass
  • Weight loss and/or lack of growth in a child
  • Weakness
 
Final Thoughts
Maintaining a healthy diet is important for children with IBD, as it can help reduce IBD symptoms, improve nutrient absorption and immune function, achieve and maintain remission, and support overall health and development. I hope the information on this page was useful to you as you navigate your child’s IBD journey in relation to their diet. Please note that this page does not address nutritional support therapy (e.g. enteral or parenteral nutrition) or specific diet plans for IBD, such as an anti-inflammatory diet, an autoimmune protocol diet, or a low FODMAP diet. There are several different types of diet plans that can be implemented for IBD patients, and a registered dietician may suggest a specific one based on your child’s disease process, location, and symptoms. If you would like more help or have any questions pertaining to diet, you can feel free to reach out to me using my email address linked below. Please know that there are options for support available as well. Being a parent of a child with IBD can be challenging! IBD Connect offers a virtual caregiver support group that meets one time monthly. We also have an in-person family support group, a virtual family support group, and a virtual young adult support group as available options for support. If you would like more information about these groups, click the link at the bottom of this page. Stay strong IBD Warrior parents!


[1] Lewis, Sharon et al., Medical-Surgical Nursing: Assessment and Management of Clinical Problems (St. Louis, Missouri: Elsevier, 2017), 944.

[2] Sudabeh Alatab et al., The Global, Regional, and National Burden of Inflammatory Bowel Disease in 195 Countries and Territories, 1990–2017: A Systematic Analysis for the Global Burden of Disease Study 2017

[3] Ananthakrishnan AN, Khalili H, Konijeti GG, et al. A prospective study of long-term intake of dietary fiber and risk of Crohn’s disease and ulcerative colitis.
 

Bibliography

Alatab, Sudabeh, Sadaf G Sepanlou, Kevin Ikuta, Homayoon Vahedi, Catherine Bisignano, Saeid Safiri, Anahita Sadeghi, et al. “The Global, Regional, and National Burden of Inflammatory Bowel Disease in 195 Countries and Territories, 1990–2017: A Systematic Analysis for the Global Burden of Disease Study 2017.” The Lancet Gastroenterology & Hepatology 5, no. 1 (2020): 17–30. https://doi.org/10.1016/s2468-1253(19)30333-4.

Ananthakrishnan AN, Khalili H, Konijeti GG, et al. A prospective study of long-term intake of
dietary fiber and risk of Crohn’s disease and ulcerative colitis. Gastroenterology. 2013;145(5):970-7.

​Lewis, Sharon Mantik, Linda Bucher, Margaret McLean Heitkemper, and Mariann M. Harding. Medical-Surgical Nursing: Assessment and Management of Clinical Problems. St. Louis (Miss.): Elsevier, 2017.
 

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<![CDATA[Navigating the IBD Journey: Creating a 504 Plan for Your Child]]>Fri, 30 Jun 2023 04:00:00 GMThttp://ibdconnectinc.org/blog/navigating-the-ibd-journey-creating-a-504-plan-for-your-child
Perhaps your child has missed several days of school. Maybe your child has even missed weeks of school due to being unwell or hospitalized. Your child may complain about feeling ill or frequently needing to use the bathroom during the school day. Maybe he or she has even had an accident or other embarrassing situation occur while at school. Or perhaps none of this has happened yet, but your child is anxious that something will happen. The anxiety may be impeding academic success or hindering relationships with peers and teachers. Any of this sound familiar? School can be a challenging environment for a child diagnosed with IBD. A 504 plan may be able to alleviate some of the burden.
 
What is a 504 Plan?
The name “504 Plan” is derived from Section 504 of the Rehabilitation Act of 1973, a federal civil rights law. This law allows for students with disabilities impairing at least one major life activity to receive the same level of education and opportunities as students without disabilities. In the case of irritable bowel disease, going to the bathroom/toileting is the major life activity that is affected. A 504 Plan provides an avenue for certain accommodations or adjustments to be made to ensure that the student with IBD receives the same quality of education as other students. The goal is to remove any barriers to education so that the diagnosed child has equal access to learning and equal educational opportunities. Typically, a 504 Plan is created by the conjoined efforts of the parents/guardians, the student, and the school. It is important to note that this law is a federal law, which means that it applies to public schools. This law may also apply to some private/other schools but only if the school in question receives federal funding. In short, any school that is receiving any amount of federal funding is legally required to provide the necessary accommodations for a student with a documented disability.
 
What Types of Accommodations can my Child Receive?
The types of accommodations that your child receives will largely be dependent on how your child’s diagnosis manifests. Plans can be adjusted to accommodate your child’s needs. That being said, here are some accommodations that students with IBD may be able to have:
 
  • Unlimited access to the bathroom
  • Predetermined visual cue to inform the teacher they are leaving for the bathroom. This could be a hand signal, a laminated bathroom or nurse pass the student can leave on the desk, etc.
  • A permanent bathroom pass
  • Access to a nurse or staff bathroom
  • Ability to carry or use cellphone
  • Unlimited access to fluids/water to stay hydrated
  • Unlimited access to snacks
  • An individual healthcare plan developed with the school nurse
  • Access to study guides or handwritten notes when child is absent from class
  • Preferential seating (i.e. close to the door for ease in going to the bathroom)
  • Tutoring services
  • Quality versus quantity preference. For example, rather than having to practice fifty of the same type of problem, your child shows their ability to master this specific type of problem by completing three to five problems correctly. If they demonstrate competence, they can be excused from the rest.
  • Testing at preferred times during the day
  • Access to the school nurse, guidance counselor, school psychologist, etc.
  • Possible accommodations to PE/gym class
  • Options to make up missed assignments or class time due to medical appointments/unplanned absences
  • Extra time to finish tests
  • Separate testing room
  • Ability to keep a set of textbooks at home
  • Shorter school days
  • Transportation accommodations
  • Ability to have full participation in after school extracurricular activities, even on days the student may be absent
  • Extra set of clothes at the nurses station
  • Special accommodations for field trips and field trip planning
 
Please note that not every child with IBD will need every single one of these accommodations. Every IBD diagnosis is different, and every diagnosed child’s needs are unique. Accommodations listed in the 504 Plan are selected based upon several conversations that include the child, the parents/guardian, and the school. Additionally, the above list of accommodations are merely suggestions, and the list is not exhaustive by any means. It may be beneficial to seek the advice of your child’s GI specialist or healthcare team when discussing possible accommodations for a 504 Plan as well. They might have some insight on potential accommodations for your child and their unique medical situation.
 
How do I Start the Process of Establishing a 504 Plan for my Child?
There are several interventions that you can implement in order to initiate the process of establishing a 504 Plan for your child. Here are some suggestions:
  • Contact your child’s doctor to obtain a letter or report documenting your child’s diagnosis.
  • Contact your child’s school. In order to start the process of creating a 504 Plan, initially you may need to schedule a meeting with a guidance counselor, school administrator, and/or an appointed staff member for these types of services.
  • Discuss your intention to create a 504 Plan with your child’s teachers. Be clear about your child’s health needs. Clear and effective communication between all parties involved in your child’s care and education (teachers, school nurse, guidance counselors, administrators, parents/guardians) is vital to creating a successful 504 Plan.  
 
Other Considerations When Creating a 504 Plan
When initiating the process of obtaining a 504 Plan for your child, there are several things that you should keep in mind.
  • Please note that as part of the process for creating a 504 Plan, your child’s school must complete an evaluation of your child. This may include reviewing grades, attendance records, teacher’s reports, health records, etc. The documentation from your child’s doctor will be a piece of the evaluation process.
  • Each school is required to have a 504 Coordinator. The 504 Coordinator ensures that the school district is in compliance with section 504 of the Rehabilitation Act of 1973. This is the individual you would approach if you did not agree with the school district’s evaluation decision or approved accommodations for your child.
  • A 504 Plan is strongly suggested for all children with IBD, even if the child is currently in remission. IBD can be unpredictable at times. If your child has an unexpected flare during the school year, having a plan in place to accommodate your child’s needs can help alleviate some stress for both you and your child. Make sure your child’s school and teachers are aware of the unpredictability of the disease.
  • In your child’s 504 Plan, it is strongly encouraged to include a section/plan for how their education will proceed if the child needs to unexpectedly stay out of school for an extended period of time. As previously mentioned, IBD can be unpredictable. Talk with your child’s school about the possibility of an in-home tutor or the ability to leave a copy of the textbooks your child is using at home. Make sure these details are documented in the child’s 504 Plan.
  • Remember that a 504 Plan is different from an IEP. An Individualized Educational Plan, or IEP, is created for the child with an intellectual or leaning disability that requires special services. An IEP is more thorough and involved than a 504 Plan is and is possible through the Individuals with Disabilities Education Act (IDEA).
  • Unlike an IEP, a 504 Plan is not legally required to be reviewed and updated each year. However, it is strongly suggested that the 504 Plan for a child with IBD is reviewed and updated by the 504 Team (parents, guidance counselor, administrator, 504 Coordinator, etc.) annually, as your child’s needs may change year to year.
  • It is suggested to start the process of creating or updating a 504 Plan as early as possible, even as early as the end of the school year. That way the plan is set into place well before the start of the next school year, and your child will be able to receive accommodations right from the first day of school.
  • Don’t assume that your child’s teachers know all of your child’s approved accommodations. As mentioned previously, communication is key to a successful 504 Plan, and ultimately, your child’s comfort.
 
Special Circumstances
  • If your child is learning remotely, you may be able to have certain accommodations, such as:
    • Student having permission to turn off camera if they feel unwell
    • Being able to leave or log off to use the bathroom without fear of reprimand
    • Being able to use a private chart to alert the teacher of need to use the bathroom
    • Ability to have access to notes or recorded lectures if student missed part or all of a class
  • Please note that 504 accommodations do not automatically apply to standardized college testing, such as the SATs and ACTs. If your child will be taking any standardized college testing during the upcoming school year, reach out to your child’s school. They should be able to walk you and your child through the process of applying for accommodations for these types of tests. This should be done well in advance to ensure that accommodations will be approved well before your child’s scheduled testing time.
  • Many parents want to know if their child’s 504 Plan will follow them to college. If your child will be attending a public university or government-funded institution, you can have assurance that your child will be able to have accommodations. Section 504 of the Rehabilitation Act of 1973 also applies to higher education, with the same caveat that the school must be federally funded in some capacity. However, your child is an adult now. He or she will be responsible for going to their college’s disability office themselves to discuss their diagnosis and set up appropriate accommodations. Depending on the college, your child may be able to receive accommodations, such as such as priority enrollment to classes (selecting classes ahead of peers), note-taking assistance, extended time for test taking, ability to take tests in a separate room, adjusted deadlines/attendance requirements, housing and/or dining accommodations, and more. Your child may benefit from bringing a copy of the current 504 Plan to their meeting with the disability office. For more information about navigating college with IBD, feel free to check out the blog post on this topic! It will be linked at the bottom of this page.
 
Talking With Your Child About Their 504 Plan
Creating a 504 Plan and making sure your child is accommodated for in an educational setting can be stressful. Please do not forget that your child is a huge part of the process. After all, the phone calls you will need to make and meetings that you will need to attend are ultimately for their benefit. Do not be afraid to involve your child in the process! One day they will need to be able to advocate for themselves, and you want to be able to teach them the skillset they need to be the best advocate they can be. In order to involve your child in the process, you will need to do so in an age-appropriate manner. You know your child best and will be able to discern the level of involvement that your child will be comfortable with. Ask your child what types of accommodations they would like to receive. Ask your child if certain interventions would be helpful to their learning and comfort. Ask your child how they feel about certain accommodations and let them know that it is okay to be open and honest with you. Your child may have fears related to “being different” or “standing out.” Let your child know that these are normal feelings and help your child to work through those feelings in a healthy, constructive manner. Seek outside help from a professional if you feel it is necessary. Make sure you review the plan with your child before you sign it to ensure they are aware of what accommodations are available to them. Involve your child and take into account their feelings in every step of the process!
 
I hope the information on this page was useful to you as you navigate your child’s IBD journey in relation to their formal education. If you would like more help or have any questions, you can feel free to reach out to me using my email address linked below. Please know that there are options for support available as well. Being a parent of a child with IBD can be challenging. Understand that a having a 504 Plan in place for your child does not mean you are seeking special privileges for your child. Instead, you are seeking to provide your child with the same quality of education as other children. IBD Connect offers a virtual caregiver support group that meets one time monthly. There are several families who attend that have 504 Plans implemented for their child. We also have an in-person family support group, a virtual family support group, and a virtual young adult support group as available options for support. If you would like more information about these groups, click the link at the bottom of this page. As always, I would like to remind everyone not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Stay strong IBD Warrior parents!

​For More Information and Further Reading:
IBD Connect Main Website
IBD Connect Support Groups
Navigating College with IBD
Emily's Email
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<![CDATA[Navigating College with IBD]]>Fri, 16 Jun 2023 04:00:00 GMThttp://ibdconnectinc.org/blog/navigating-college-with-ibd
The month of June is often an exciting time. Many families are looking forward to making memories with fun summer activities. Trips to the beach, time in the pool, Fourth of July fireworks, family vacations, and campfires are on the horizon. June is the transition month that marks the end of the school year and the official start of the summer season. For some of you, the end of the school year means that your child graduated high school. What an amazing accomplishment! Your child successfully completed the academic requirements for a high school diploma while navigating the extra challenges that come with a chronic illness. You are proud of your child, but nervous about what the future holds. If your child has chosen to enroll in college post-graduation, you may be nervous for the big transition in the fall. Will your child be able to manage his or her medications independently? What will your child’s diet look like? Will the stress of the transition cause a flare? Will your child receive academic support? How will your child’s medical care transition smoothly? This page is intended to help guide you and your child through the college transition. Your child is now an adult, growing in independence. While I typically write to parents of children diagnosed with IBD, from this point on, I will be writing directly to the impending college student with an IBD diagnosis. Parents, you are still more than welcome to read over the information presented on this page as you help navigate your child through this next step in their life. In fact, it may be beneficial for both the future college student and the parent to read this information together to ensure that the transition to college is as smooth as possible for both parties. To the parent, it is my hope that you feel comfortable and confident with your child’s ability to navigate their diagnosis independently away from home. To the future college student, it is my hope that with the right strategies and support, you will be able to thrive academically, socially, and personally while you are at school. However, while you are busy preparing for college, please don’t forget to enjoy all those fun summer activities too!
 
Tip #1: Create a list, folder, or binder with your current pertinent medical information.
 
Creating a list, folder, or binder with all your medical information in one place will help you stay organized as you navigate your independence in relation to your diagnosis. You can consult your list if you need to make a call to your insurance company, if you are planning to see a new gastroenterologist, or if you unexpectedly get admitted to the hospital.
 
You can add anything that you deem as relevant to your IBD journey to your list, folder, or binder, but some items to consider including are:
  • Name, address, and phone number of your current home primary care doctor
  • Name, address, and phone number of your current home gastroenterologist
  • Name, address, and phone number of your current home pharmacy
  • All your current medications, including: medication name, strength, dosage, route, and frequency
  • Current health insurance information, including a phone number for the insurance company and/or your health insurance card or copy of your health insurance card
  • Printouts of the doctor’s notes from your last visit, your most recent labs and bloodwork, and if possible, the notes from your initial diagnosis
 
Tip #2: Determine your plan for health insurance coverage.
 
As you are probably aware, most health insurance plans allow dependents to stay on their parent’s policy until age twenty-six. Of course, you should always check with your parents to review any limitations of their health insurance plan, as well as for approval to stay on their policy. If you find yourself in need of health insurance, there are other options available. Most colleges and universities offer a student health plan that you can enroll in at the start of each semester. You should call and do research before enrolling to ensure that your specific healthcare needs will be covered under the plan.
 
Tip #3: Familiarize yourself with medical and health insurance terminology.

 
For some, going to college means the transition from pediatric care to adult care. This transition typically happens between the ages of eighteen and twenty-one. This can be overwhelming at first. Your pediatric team is familiar and comfortable, and the world of adult care is new and daunting. Whether you make this transition within your current practice/healthcare system or you are switching to a completely new healthcare system, it is best to start practicing your independence in making your medical decisions. Familiarize yourself with scheduling appointments independently and answering your provider’s questions directly, rather than looking to a parent or guardian for help. Research and understand your diagnosis and the medical terminology associated with it. Know your medications and medication schedule. Another huge piece to becoming more independent in your medical care is understanding health insurance. What is a deductible? What are co-pays? What is the importance of going to an in-network provider? Once you understand the basic terminology, apply your newfound understanding to your specific health insurance plan. Will you need referrals for out of state providers if you are attending college out of state? Have you met your deductible? Knowledge is power. The more knowledge you have about your diagnosis, medications, and health insurance, the more comfortable you will feel managing your medical care independently. The more independent you are, the easier the college transition will be.
 
Tip #4: Inform your current provider of your intent to attend college.
 
You should inform your current provider of your plans to attend college months in advance for the smoothest transition possible. He or she can help you adjust your medications or treatment plan as needed, as well as provide the necessary prescription refills or medical documentation you may need for disability services during the transition period. If you plan on attending college far away from home and will not be returning to your current provider for care, your current office may be able to help you find a new provider to take over your IBD care. He or she may also be able to fax over any medical records from your current practice to your new practice. If you plan to do this, you should contact the new office to schedule an appointment as soon as possible. This way, you have a better chance of securing an appointment soon after your arrival to college. If you plan on attending a college that is far enough from home where driving to appointments is not feasible, your provider may be able to help you locate another gastroenterologist close to campus to collaborate on your IBD care. You should always double check with your provider and your insurance company to make sure that this is feasible.
 
 
Tip #5: Ensure that you update your preferred pharmacy if necessary and locate the nearest in-network hospital.
 
This tip is pretty self-explanatory! Make sure that you update your preferred pharmacy with your current or new provider’s office if necessary. Also, if you take medications that need to be refrigerated, ensure that you have access to a refrigerator while on campus. Locate the nearest hospital to your campus that will accept your insurance in case an ED trip or hospitalization becomes necessary. You can add the new pharmacy and hospital information to your list, folder, or binder.
 
Tip #6: Speak with your college’s disability office or center.
 
Many colleges have a disability office or center. If you will be attending a public university or a government-funded institution, you can have assurance that your school will be able to provide you with learning adaptations to accommodate your diagnosis under Section 504 of the Rehabilitation Act of 1973. Depending on your college or university, you may be able to receive accommodations, such as priority enrollment to classes (selecting classes ahead of peers), note-taking assistance, extended time for test taking, ability to take tests in a separate room, adjusted deadlines/attendance requirements, housing and/or dining accommodations, and more. Some students are able to request rooms with a kitchen to prepare meals from home rather than having a meal plan. You also may be able to request a single room or a room with a bathroom. It is best to set up a meeting with your college’s disability center as soon as possible. Bring copies of your current 504 if you had one in high school! Most private universities also have a disabilities office that will work with your specific needs to help you achieve academic success. It is always best to call first to ensure that receiving accommodations is feasible.
 
Tip #7: If you are comfortable, talk with your professors and roommates about IBD.
 
Whether or not to have a conversation with other individuals about your diagnosis is dependent upon your personal comfort level. Many college students with IBD find that being open and honest about their diagnosis and the accommodations and/or restrictions they have is more freeing, leading to less stress overall. If you choose to talk with a professor, it may be better to talk with them one-on-one during their office hours. Be sure to have a letter or note from your school’s disability office on hand so that your professor has written proof of your need for accommodations. Having a conversation with your professor may help him or her to better understand your diagnosis, as well as remember your face in connection to the type of accommodations you need. If you have a roommate or several roommates, choosing to talk with them about your diagnosis is also a very personal decision. If you choose to discuss your diagnosis with them, it may be helpful to explain what IBD is and communicate to them your need to urgently use the bathroom or the importance of prioritizing rest. If you are living in a suite with other roommates and have a kitchen, you may want to mention any dietary restrictions you have. This may help to prevent awkwardness in the future.
 
Tip #8: Plan ahead to ensure you are receiving adequate nutrition.
 
If you will be purchasing a meal plan, you may want to talk to dining hall staff or a manager about ingredients used in food preparation or any special concerns or considerations you have when it comes to food. There are typically several different meal options presented in the dining hall at any given time. Be smart with your food choices and pick items that meet your specific nutritional needs. It may also be helpful to keep healthy snacks in your dorm room that you know will not provide you any discomfort. If you are living in a dorm with a kitchen or in an apartment, you will be able to prepare all of your meals. Meal prepping and/or making meals to keep in the freezer can be a huge time saver, especially as you navigate the busyness of your course work and social life while at school. When it comes to your nutrition, the best thing you can do is to be proactive. Planning healthy meals in advance before you become overwhelmed with academics is your best option!
 
Tip #9: Know your terrain.
 
This may sound silly, but when you receive your class schedule, walk through your campus to locate the nearest bathroom to each of your classes before your classes even begin! That way if there is ever a situation in which you urgently need to use the bathroom, you at least have some idea of where the closest one is. There are also apps that you can download to your phone to help you locate the nearest bathroom. It also may be helpful to identity other resources on campus, such as the disability center, student counseling services, the student health center, etc.
 
Tip #10: Prioritize your health and enjoy your time at college!
 
The last tip is to prioritize your health! Going to college is an incredibly exciting time for many young adults, but it can also be a challenging transition. You will be away from home in an unfamiliar environment and will be completely responsible for your medical care for the first time. This increased stress has the potential to cause a flare, therefore, it is important to prioritize your health by finding or creating a support system you can lean on if you find yourself getting overwhelmed. Your support system can include your parents or family members, friends from high school, new friends from college, or a counselor. Many colleges and universities offer a certain number of free counseling or therapy sessions for students each semester. Take advantage of those opportunities. Reach out to people and build your support network before you become overwhelmed. That way, if you do ever feel overwhelmed, you have people you can lean on for support. Ensure that you rest, eat well, and stay hydrated. And enjoy the experiences and opportunities that college has to offer. You got this!
 
If you are a high school graduate with plans to attend college in the fall, I hope the information on this page was helpful for you as you prepare for your big transition. Please use this summer to organize your medical information and create a plan for doctor’s visits, prescription coverage, health insurance approval, etc. Remember, if you are going to run into a problem, it’s best to run into the problem in June rather than August so there is time to correct it before starting school! If you have any questions or need support, IBD Connect is here for you. We offer a virtual young adult support group for ages 18-30 that meets one time monthly. For more information about how to get connected with this support group, click the link at the bottom of this page. You can also feel free to email me. My email address is linked below! If you are a parent reading this page, I hope that this information was useful to you as you assist your child through this major life transition. If you would like more support, we offer a virtual caregiver support group that meets one time monthly. If you would like more information about this group, click the link at the bottom of this page. As always, I would like to remind everyone not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Stay strong IBD Warriors/IBD Warrior parents!

IBD Connect Main Website
IBD Connect Support Groups
Emily's Email
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<![CDATA[Living Beyond the Bag: An Interview With Two Ostomates]]>Wed, 31 May 2023 04:00:00 GMThttp://ibdconnectinc.org/blog/living-beyond-the-bag-an-interview-with-two-ostomates
Welcome back to Emily’s Gut Check! Today we will be continuing our discussion on ostomies! If you missed the previous post, I encourage you to check it out using the link at the bottom of this page. In it, we define what an ostomy is, briefly discuss ostomy care and management, and finish with addressing some ostomy-related myths and questions. This information will hopefully aid you in your understanding of the material presented below. I’m so excited to share that today’s post is actually an interview with two of our own IBD Connect team members- Meghan and Laura. As the social media director, Meghan helps the IBD Connect team by managing our social media platforms. She does an amazing job curating and posting written material, graphics, and images that seek to promote IBD education and inform IBD Connect members of upcoming events. Laura, on the other hand, facilitates a monthly virtual young adult support group through IBD Connect. There is such a need for IBD support for this age group, and Laura does a wonderful job making these young adults feel welcomed, listened to, and understood. Meghan and Laura have more than their connection to IBD Connect in common, however. Both of them were diagnosed with IBD and have ostomies! In today’s interview, we discuss how their ostomies have impacted their physical, mental, emotional, and social lives. We cover topics like ostomy surgery, evolving relationships with friends and family, and some of the unforeseen challenges of ostomy life. It is my hope that this discussion not only broadens the readers’ overall understanding of ostomies, but allows the reader to apply the clinical knowledge reviewed in the last post to practical, real-life situations. As they reflect back on their IBD journeys, Meghan and Laura provide thoughtful and insightful answers to these common ostomy-related questions. I have faith that readers will find support and encouragement from their beautifully articulated thoughts and feelings. Please enjoy the interview!
 
Can you please introduce yourselves? Tell us a little bit about yourself and your connection to IBD Connect!
 
Meghan: My name is Meghan Brown, and I am 31 years old living in Central Virginia with my husband, our two children, and lots of pets! I love spending time with my family, playing in the garden, escaping to the beach, and relaxing with a cup of coffee. I was so fortunate to be introduced to IBD Connect through a mutual friend and quickly stepped in to help with social media. It has been so much fun being able to use my creative side to support a cause that is so near to my heart – pediatric IBD.
 
Laura: Hi everyone! My name is Laura Castrigano, and I’m a teacher and mom living in northern Vermont. I recently joined the IBD Connect team as a facilitator for our virtual Young Adult support group. We’re working on building a community where young people living with IBD feel welcome and understood - please feel free to join our monthly meetings to see if it’s a good fit for you! 
 
If you feel comfortable sharing, can you please summarize your IBD journey? How old were you when you were diagnosed? How did your diagnosis impact your daily life?
 
Meghan: I was diagnosed with Crohn’s Disease when I was 13 years old. I began having the typical symptoms of diarrhea, pain, and bloody stool. My parents took me to the doctor, but my symptoms were immediately dismissed, and I was labeled as a nervous child. Thankfully my parents were not going to accept that diagnosis, and a few months later I was formally diagnosed with IBD. My Crohn’s was so severe that I had to be homeschooled my freshman year of high school because I literally could not get out of bed. My body was incredibly weak, and I was constantly in and out of the hospital. I began taking biologics and thankfully fell into remission, allowing me to return to high school the following year.
 
Laura: I was diagnosed with Ulcerative Colitis when I was 25 years old. My disease progressed rapidly, and within six months I had already been through multiple medications and hospitalizations without any improvements. While I continued to work full time through the fall semester, the situation became untenable and I took a leave of absence after the holiday break. It was so frustrating to feel like nothing I was doing was helping my symptoms. I was exhausted physically and emotionally, and spent my days resting, getting infusions, visiting doctors, and waiting on hold with my insurance company. 
"I was exhausted physically and emotionally, and spent my days resting, getting infusions, visiting doctors, and waiting on hold with my insurance company" -Laura
What ultimately led to the decision to get an ostomy? Was it a life-threatening situation? Was medication therapy failing or losing effectiveness for symptom management? How old were you when the procedure was performed?
 
Meghan: After being in remission for five years, I started getting sick again while I was in college. I had formed immunity to the biologic that had previously helped me get into remission, and now had to go through my options. Unfortunately, I was failing all the available medications. When I was 24 years old, I went in for a routine colonoscopy and was feeling the best that I had felt in a while. It turns out, that wasn’t the case at all, as my doctor discovered high grade dysplasia deep within the tissue of my colon. I was deemed precancerous and given the options to do nothing, have my colon partially removed and continue with routine colonoscopies to monitor potential cancer risks, or have surgery to remove my colon and rectum, and live with an ostomy bag for the rest of my life. Of course, I wanted nothing to do with an ostomy, and to be honest I didn’t really know what one was. However, an intimate conversation with my surgeon ultimately helped me to realize that an ostomy was the best decision for me, and I am so glad I went through with surgery.
 
Laura: One day in February (shortly after my 26th birthday), I suddenly began feeling extremely unwell. I was in severe pain, and when I called my doctor, he told me to go to the emergency room. Twelve hours later, I had emergency surgery to remove my colon. It was shocking to me, as up until that point I was unaware of ostomy surgery as a treatment. 
 
Could you walk us through the process of getting an ostomy? What was it like before, during, and after the procedure?
 
Meghan: I had a month’s notice before having surgery for my ostomy. Before my procedure I tried to research and learn as much as I could, which was difficult as people didn’t really talk about it too much on social media. I found a few blogs and YouTube videos, but that was about it. I also met with my stoma nurse the day before surgery so that she could mark my stoma site. We discussed where my stoma would be placed and considered different factors, such as where my pants sit on my waist. She used a black sharpie and drew four spots on my stomach, marking the preferred spot with an #1, but also giving the surgeon options if something went array.
 
My procedure lasted 8 hours as I had my entire colon removed, my rectum removed, and an ostomy bag placed.
 
After the procedure I stayed in the hospital for five days while my bowels “woke up.” It’s important to be able to pass gas and output before going home. While in the hospital I also had to work to regain strength and ate a very basic diet. Grilled cheese sandwiches and tomato soup were my go-to, and I was instructed to very thoroughly chew! My stoma nurse also visited and taught me how to change and empty my bag. Before I could leave the hospital, my care team wanted to ensure that I knew how to care for my stoma on my own.
 
Laura: I might not be the best person to ask, as I was pretty incoherent both leading up to and following my procedure… I basically got a crash course in ostomy anatomy and placement from a WOC nurse right before surgery. She talked me through where it would go and what it would look like. She examined my abdomen and drew Xs in a few areas to show the surgeons where she recommended the stoma be placed. After the surgery, she visited me regularly to assist me in changing the appliance. Due to the severity of my disease, I was in the hospital for ten days before being discharged, so I had ample opportunity to ask questions and watch skilled nurses change my appliance for me. 
 
Emotionally, how did you feel post procedure? Again, from an emotional standpoint, what was it like navigating the process of learning how to care for your ostomy?
 
Meghan: I was in a very positive mindset after my procedure. However, before my procedure, I felt like my life was over. I was adamantly against having an ostomy bag and truly felt that it would ruin my quality of life. I was miserable and felt lost in this deep tunnel of negativity and felt horrible about myself. After having that life-altering conversation with my surgeon, I made up my mind that I was tired of feeling so terrible and decided that an ostomy was going to be my second chance. By this point I had been sick with Crohn’s for 10 years and missed out on so much of my life. If I had to have an ostomy, I was going to make the best of it. This mindset helped me navigate how to care for my stoma. I think the most difficult thing was finding appliances that worked best for me, but that is a learning curve that most people will encounter.
 
Laura: Because my surgery was unplanned, it was really hard for me to initially accept that my ostomy would be a part of my life. While I was certainly grateful for the life-saving procedure, it was hard to come to terms with my new normal and how I would navigate my formerly active lifestyle with an ostomy. At first I was tentative to change my appliance at home, and became anxious any time things went wrong - like when I had a skin issue or a prolapse. With time, I became more comfortable both changing the appliance as well as accepting that thinking about it would be a part of my daily mental load. 
 
How has your life changed since getting an ostomy? Has it improved your quality of life in any way?
 

Meghan: My life has completely changed for the best since having surgery. Of course, I still have Crohn’s Disease, but I’m finally able to live. I had been sick for so long, I thought feeling that way was normal. I’m no longer in pain, I don’t feel anxious trying to find the nearest bathroom or wondering if I’ll make it to the toilet in time, I’m able to eat foods that I once couldn’t, and I can be present in the moment.
 
Laura: While my recovery wasn’t straightforward (I actually had 3 additional surgeries to create a J-Pouch, which ultimately failed within 4 months of take down), I now live a life similar in many ways to my life before my UC diagnosis. In the last few years, I have been able to return to work full time, travel, run a half marathon, and continue to push myself physically and mentally. Most importantly, my ostomy has allowed me the stability and health to have a successful pregnancy, and I am now a mother to the most amazing toddler. 
"My life has completely changed for the best since having surgery. Of course, I still have Crohn's Disease, but I'm finally able to live." -Meghan
What were some of the biggest challenges you faced when adjusting to life with an ostomy, and how did you overcome them?
 
Meghan: I think the biggest challenge was accepting that this would be my new normal, forever. I will never be able to see my stomach without a bag or stoma, and I’ll never use the bathroom “normal” again since my ostomy is permanent. What helped me most was connecting with other ostomates on social media. There is a huge community of ostomates out there, extremely supportive, helpful, and open armed. It’s really amazing to be able to connect with people you’ve never met in person and bond over something so personal. I’ve quickly become best friends with a lot of the people I’ve met online, and we talk almost daily. Having that support system, knowing that they are experiencing the same things (physically and mentally) that I go through, and vulnerably putting ourselves out there together is what has helped me to accept my ostomy. Positivity has also been a coping strategy through just being thankful to be alive. Celebrating the small wins and learning to not stress over the little things – my perspective on life totally changed after going through surgery.
 
Laura: It’s really hard to explain to people that while I’m no longer “sick,” I’m also not unaffected by my disease. I struggle with dizziness, dehydration, and fatigue, as well as with intestinal blockages if I’m not careful about the foods I eat. I also have chronic pain associated with my scar tissue and failed JPouch, which tends to flare up when I am stressed or sick. While these things are minor in comparison to the symptoms I used to experience with UC, they do impact my day to day life and mean I need to be thoughtful about getting adequate rest and communicating what I need to my loved ones. 
 
How has having an ostomy impacted your relationships with friends, family, and significant others?
 
Meghan: My ostomy has given me my two biggest blessings – my children! I chose an ostomy because I didn’t want the threat of cancer to impact my ability to be a mother. I could never fathom being a young mom dealing with something like that. The only way to ensure this wouldn’t happen was to have ostomy surgery. I had my daughter three years after having surgery, and now we also have a little boy. I was able to experience pregnancy with my ostomy (twice!) and thankfully had two healthy births. I would love to have more children, and I can’t help but smile when I think about how my ostomy has given me that possibility, as well as the ability to be here to watch them grow.
 
Laura: At last month’s Young Adult meeting, I was reflecting on how interesting it is to meet new people who don’t already know about my medical history and ostomy. My family moved two years ago, and I have met many new friends and colleagues since. Now I have the choice of how and when to share my story with new people, and I’m finding myself not sharing it more often than not. I think this demonstrates that while my ostomy is still something I think about each day, it’s no longer a defining characteristic for me the way it was for the first year or two I had it. 
 
As for how my ostomy has impacted the relationships I already had with family and friends - my family and friends are wonderful, but it’s hard for them to understand what I’ve been through. I’m hopeful that my work with IBD Connect will help me develop new friendships and understanding with those with similar experiences.
 
Was there anything that has surprised you about getting an ostomy?
 
Meghan: I think the most surprising thing is the ostomy community! There are a lot more people out there that have an ostomy than you know. It’s not something as uncommon as you would think, and it’s not limited to one demographic. People of all ages have ostomies, and they are all so supportive of one another.
 
Laura: It took me a while to figure out how to sleep comfortably with it. And while it rarely happens, it can make some pretty interesting noises at inopportune moments! 
 
Finally, do you have any words of advice for a parent of a child who may need an ostomy? What encouraging message could you share?
 
Meghan: My biggest piece of advice is to not get too sucked in – meaning that there is a lot of information out there, both positive and negative. It can be easy to fall into a negative spiral, but just remember that everyone’s experience is unique. You and your child get to decide how to perceive an ostomy and you get to choose your own mindset. Don’t let anyone or anything influence how you feel, because at the end of the day the most important thing is that your child is alive, happy, and healthy.
 
Ostomy life can be a beautiful life. It can be a second chance to live the life you never knew you were missing, and it can bring on so many new opportunities. It’s up to you to decide how you want to live.
 
Laura: Oof, this is a hard one.. As a mom, I always want what’s best for my child. It’s so scary and overwhelming to have a sick child and to feel like you might make the wrong decision when you are trying to help them feel well again. The advice I would give would be to trust your gut, and to trust that if an ostomy is medically what’s best for your child, that you as their parent will be able to provide the love and support they need to physically and emotionally recover from the changes that having an ostomy will bring for both your child and your family. 
The advice I would give would be to trust your gut, and to trust that if an ostomy is medically what's best for your child, that you as their parent will be able to provide the love and support they need to physically and emotionally recover from the changes that having an ostomy will bring for both your child and your family." -Laura
This concludes our interview. Clearly, Meghan and Laura unpacked a wealth of knowledge related to the physical, mental, emotional, and social changes that come with an ostomy. If you are looking for more information or would like to receive support, please feel free to contact me. My email is linked at the bottom of this page. I can direct you to an individual on the IBD Connect team that can help. Even though today’s post was not clinically heavy, I still want to remind everyone not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Before we wrap up this post, I want to give a huge shout out to Meghan and Laura. Their eagerness to participate in this interview speaks volumes about the hearts they have for supporting this cause. Thank you so much Meghan and Laura for an awesome interview! And as always, stay strong IBD Warriors/IBD Warrior parents!
"Ostomy life can be a beautiful life. It can be a second chance to live the life you never knew you were missing, and it can bring on so many new opportunities. It's up to you to decide how you want to live." -Meghan
IBD Connect Main Website
IBD Connect Support Groups
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<![CDATA[All About Ostomies: What you Really Want to Know]]>Fri, 12 May 2023 04:00:00 GMThttp://ibdconnectinc.org/blog/all-about-ostomies-what-you-really-want-to-know
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Welcome back to Emily’s Gut Check! Today we will be discussing ostomies. There are roughly 725,000 to 1 million people living with an ostomy or continent diversion in the United States.[1] Approximately 100,000 ostomy surgeries are performed each year in the United States.[2] Despite the sheer number of people that have ostomies, there still seems to be a lot of confusion encompassing them, even amongst the IBD community. What is an ostomy? Why would someone have to undergo ostomy surgery? How do you care for an ostomy? Are they permanent? Can you tell if someone has one? These are just a few of the questions I hope to answer in this post. Together, we will unpack what an ostomy is, briefly discuss care and management, and finish with addressing some ostomy-related myths and questions. This post is a little more medically heavy than my last post, so as always, I want to remind everyone not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Now let’s dive into the discussion!
 
What is an Ostomy?
An ostomy is a surgical procedure in which a portion of the digestive or urinary system is rerouted through an opening in the abdomen called a stoma. The stoma allows for waste to pass out of the body. [3] The waste is then collected in an external ostomy pouch or appliance. There are three common types of ostomies. These are:
  • Colostomy: The surgical opening to the abdomen is created with the colon, or large intestine. A portion of the colon is removed or bypassed and the remaining portion is pulled through the abdominal wall to create the stoma. A colostomy can be made at almost any point in the colon. There are further subtypes of colostomies depending on the portion of the colon used. Colostomies can be either temporary or permanent.
  • leostomy: The surgical opening to the abdomen is created with the ileum, which is the third and lowest portion of the small intestine. An ileostomy is usually located on the lower right-hand side of the abdomen. With this procedure, waste bypasses the colon, rectum and anus. Ileostomies can be temporary or permanent.
  • Urostomy: Rather than stool, a urostomy diverts urine through the opening of the abdomen. This is done by using the ureters (the tubes that bring urine from the kidneys to the bladder) to create the stoma in the abdomen. There are several types of urostomies, but in general, urostomies are performed to bypass a diseased or removed bladder. In general, urostomies are typically permanent.  
There are other more specific and/or rare types of ostomies and continent bowel diversions, but these won’t be discussed on this page. For more information, you can visit (https://www.ostomy.org/continent-diversions-other-types-of-ostomy/).
 
There are several reasons why an individual may need ostomy surgery. Some of these include:
  • Birth defects
  • Cancer
  • Diverticulitis
  • Abdominal/pelvic trauma
  • Infection
  • Fecal incontinence
  • Severe bowel obstruction/blockage
  • Irritable bowel disease
    • Crohn's disease 
    • Ulcerative colitis 
 
Ostomies in Relation to IBD
In the case of IBD, ostomies are often used when medical treatments fail to control symptoms, or when there is a risk of life-threatening complications, such as bowel obstruction or perforation. The common types of ostomies needed for IBD patients are colostomies and ileostomies. These types of ostomies can be either temporary or permanent, depending on the severity of the disease. Sometimes, a temporary ostomy is sufficient to allow parts of the bowel to rest and heal. Temporary ostomies can provide relief and improve quality of life by:
  • Reducing inflammation: The ostomy diverts waste away from the inflamed/diseased portion of the bowel, which can promote healing of the bowel by allowing it to rest.
  • Improving symptom control: Symptoms such as abdominal pain, diarrhea, and urgency are often reduced/resolved.
  • Restoring nutrition.
A temporary ostomy is usually able to be reversed, typically at least 3 months after the procedure. This means that a surgeon would reattach the bowel where it was originally cut to create the stoma. In other cases, a doctor may recommend a permanent ostomy with no plans for reversal. In this situation, the damaged portion of the bowel is usually surgically removed. A permanent ostomy still provides the same benefits of improved symptom control. It is important to note that each IBD case is approached individually. If ostomy surgery is advised for your child, the type of ostomy that is recommended is based on your child’s clinical presentation and the doctor’s best judgement.
 
Living with an Ostomy
Because there are several different types of ostomies and appliances, I will not be going into very specific details about how to care for an ostomy. Instead, I will give general guidelines that most providers would agree upon in relation to ostomy care. You should always follow the patient-specific guidelines given to you from your child’s doctor or wound care/ostomy nurse.
  • Emptying the pouch: The waste that collects in the pouch needs to be emptied regularly, usually when it is one-third to one-half full. The frequency may vary depending on the output and consistency of the waste. If the pouch becomes completely full, the weight can loosen the seal, which may cause a leak. The pouch is typically secured to a flange, which is secured to the abdominal wall. It is important to note that there are differences in ostomy appliances. Some ostomy appliances are a one-piece system, where the flange and the pouch are connected. Some pouches are a closed system and are simply disposed of when full.
  • Changing the appliance: The appliance needs to be changed regularly, usually every 3 to 7 days, or when it is leaking, damaged, or uncomfortable. The skin around the stoma should be cleaned and dried before applying a new pouch.
  • Checking the stoma: The stoma should be checked regularly for signs of infection, such as redness, swelling, or discharge. Any changes in the size, shape, or color of the stoma should be reported to the healthcare provider.
  • Maintaining a healthy diet and hydration: A balanced diet and adequate hydration are important for maintaining healthy bowel or urinary function and minimizing odor and gas.
  • Managing odor and gas: Certain foods, medications, and pouch accessories can help manage odor and gas associated with an ostomy.
  • Seeking support: Living with an ostomy can be challenging emotionally and socially. Support groups, counseling, and other resources can provide education, guidance, and emotional support for ostomy patients and their caregivers.
 
In general, you should give your child’s provider a call if your child’s stoma:
  • Is swollen
  • Appears as though it is being pulled in below skin level
  • Is bleeding more
  • Has turned purple/black/white
  • Is leaking often or draining fluids
  • Has a foul smelling discharge
 
You should also give your child’s provider a call if:
  • You are changing your child’s appliance every day
  • Your child is showing signs of dehydration
  • Your child has persistent diarrhea
  • If the skin around the stoma is red, raw, has a rash, is very dry, hurts/burns your child, is swollen
  • If your child has significantly less waste in the pouch than normal or has a fever[4]
 
There are some potential complications associated with having an ostomy for IBD, including: stoma problems, pouch problems, dehydration, nutritional deficiencies, psychological distress, and in rare cases, bowel obstruction. In general, it is always best to have open, honest communication with your child’s provider about any questions or concerns you or your child may have in relation to your child’s ostomy.
 
Living with an ostomy can be challenging, but there are many resources available for support and information, including United Ostomy Association of America (https://www.ostomy.org/) and Hollister Ostomy Care (https://www.hollister.com/en). IBD Connect is also here to support you! Please feel free to reach out to myself or someone else on the IBD Connect team.
 
Myths and Questions:

Myth: An individual with an ostomy must feel sick all the time.
I will respond to this myth in regards to ostomies in IBD patients in specific. A large majority of people with IBD who have had ostomy surgery actually state that having the ostomy surgery has given them their life back. As mentioned earlier, ostomy surgery can help to alleviate a lot of the symptoms of IBD because the diseased/inflamed portion of the bowel is no longer working so hard. This means that symptoms like abdominal pain, urgency, and diarrhea are typically reduced or resolved.
 
Question: Can you exercise with an ostomy?
Yes! In general, if there were no complications with the ostomy surgery, your child can begin exercising again pending your doctor or provider’s approval. Your child may need to have some accommodations, however. For example, if your child is interested in playing a contact sport, your child may need to wear a protective stoma cover. The risk of hernia is also greater so it is best to discuss activities like weight lifting with your provider.
 
Myth: Ostomies are permanent.
This myth has already been addressed in this post. To recap, every IBD case is unique. If ostomy surgery is advised, the type of surgery recommended is based on your child’s clinical presentation and the doctor’s best judgement. If your child’s doctor recommends surgery to help treat IBD, sometimes, a temporary ostomy is sufficient to allow the bowel to rest. The ostomy may be able to be reversed, usually at least 3 months after the procedure. In other cases, a doctor may recommend a permanent ostomy with no plans for ostomy reversal. Each IBD case should be approached individually.
 
Question: Will the ostomy smell?
Typically, an ostomy appliance is air-tight. This means that you shouldn’t notice any odor if the pouch is closed. Many ostomies appliances are built with air filters that neutralize potential odors as well. If you do notice an odor, there may be a leak. You may notice an odor when you change or empty the pouch because the system will be open. To prevent odor, you should ensure that the pouch system fits nicely and empty it regularly. If the pouch gets too full, the weight can cause a leak, which means that odor may escape. Sometimes certain foods can cause more odor. There are products that help combat odor if it does become a true concern or issue. These products are designed specifically for ostomies. You should never attempt to use an odor neutralizing product that isn’t made specifically for ostomies.
 
Question: Can I shower or bathe with an ostomy? What about going in a pool, lake, or ocean?
Yes and yes! For showering and bathing, you should make sure you talk with your child’s medical provider or wound care/ostomy nurse. Some patients prefer to shower or bathe with the appliance completely off. Some patients find that this increases stoma irritation. However, it is okay for the stoma to get wet. In general, if your child is showering or bathing without the pouch system, make sure the flange/skin barrier is removed as well. If your child is showering or bathing with their pouch system, ensure that the seal is secure and wear both the skin barrier/flange and the pouch system. Patients can also swim while wearing their pouch system! The system is designed to be water resistant. Just be sure to check the seal prior to swimming.[5]
 
Myth: You can’t wear normal clothes with an ostomy.
Typically, you can wear the same clothing after an ostomy surgery as you wore before ostomy surgery. There are some products that help to keep the pouch in place if that is something your child desires. Furthermore, ostomies usually aren’t visible underneath clothing!
 
Question: Does your diet have to change with an ostomy?
Truthfully, your child’s diet should change. Once again, every IBD patient is different so it is important to have a discussion with your child’s medical team in regards to diet. These discussions should include a registered dietician who has experience with ostomy surgeries. In general, immediately following surgery and for a few weeks, it is best to eat foods that are easier to digest and foods that produce less gas. Some other helpful tips include:
  • Eating several small meals throughout the day instead of three large meals
  • Avoid straws, as they can cause increased gas
  • Avoid difficult to breakdown foods
  • Avoid fried/greasy foods
  • Stay hydrated
These are very general guidelines. Once again, it is always best to talk to your child’s medical team. A comprehensive guide to eating with an ostomy can be found here: https://www.ostomy.org/wp-content/uploads/2022/02/Eating_with_an_Ostomy_2022-02.pdf   
 
Myth: You cannot get pregnant if you have an ostomy.
False! Many ostomates successfully become pregnant and deliver healthy children. When this time comes for your child, it will be important for her to communicate with her medical team about her intent to become pregnant. Generally speaking, however, ostomy patients typically do well in pregnancy if there are no other health concerns. There can be some skin changes with the stoma and other minor changes that occur during pregnancy.
 
I hope the information on this page was useful in providing a general overview about ostomies. I am excited to share that the discussion about ostomies today was actually planned in preparation for my next post, which happens to be a very special interview with two ostomates! We will look into how having ostomy surgery has impacted their lives, physically, mentally, and emotionally. I am looking forward to sharing this interview with you all next time on Emily’s Gut Check. I have a few reminders to wrap up this post. Once again, it is always best to listen to your child’s medical provider in regards to your child’s individual treatment plan. Please do not use this page as a substitute for a professional medical opinion. I also just wanted to remind everyone that that there are options for IBD support. The links for the IBD Connect main page and support group pages are listed below. If you have any questions for me or if you want to venture a topic for a future blog post, feel free to email me at my email address listed below. As always, stay strong IBD Warriors/IBD Warrior parents!

END NOTES

[1] Burgess-Stocks, Joanna et al., Ostomy and Continent Diversion Patient Bill of Rights, 2022
[2] Burgess-Stocks, et al.
[3] Ostomy
[4] Ileostomy - Caring for Your Stoma
[5] Contributor. Swimming with an Ostomy.

Bibliography

Burgess-Stocks, Joanna, Jeanine Gleba, Kathleen Lawrence, and Susan Mueller. “Ostomy and Continent Diversion Patient Bill of Rights.” Journal of Wound, Ostomy & Continence Nursing 49, no. 3 (2022): 251–60. https://doi.org/10.1097/won.0000000000000876.

Contributor. “Swimming with an Ostomy.” United Ostomy Associations of America, July 17, 2020. https://www.ostomy.org/swimming-with-an-ostomy/#:~:text=You%20can%20swim%20or%20be,harm%20or%20enter%20your%20stoma.

“Ileostomy-Caring for Your Stoma: Medlineplus Medical Encyclopedia.” MedlinePlus. Accessed May 11, 2023. https://medlineplus.gov/ency/patientinstructions/000071.htm.  

“Ostomy.” MedlinePlus. Accessed May 11, 2023. https://medlineplus.gov/ostomy.html.


IBD Connect Main Website
IBD Connect Support Groups
Emily's Email
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<![CDATA[Supporting an IBD Warrior: My Personal Experience]]>Fri, 28 Apr 2023 04:00:00 GMThttp://ibdconnectinc.org/blog/supporting-an-ibd-warrior-my-personal-experience
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Welcome back to Emily’s Gut Check! If you are already familiar with my blog, you know that I primarily gear my writing to parents of children diagnosed with IBD. While I hope that this blog is a useful tool to support anyone affected by IBD, my overall goal is to equip, educate, and encourage parents especially as they navigate their child’s IBD journey. I attempt to write blog posts that draw on both my professional experience as a registered nurse, as well as my personal experience as a close friend to an IBD warrior. Today’s post is near to my heart, as I want to focus on the latter and share my own personal experiences supporting a friend with IBD. At first glance, this post may seem to be geared only towards friends of IBD warriors, and I truly do hope that friends, siblings, extended family, and other acquaintances will benefit from my perspective. However, I am hopeful that if you are a parent reading this page, you may be able to gain insight on a different facet of your child’s life that you may not see as often: their friendships! You also may choose to share this information with people who approach you with questions on how to interact with your child after an IBD diagnosis. Or, if it is age appropriate, you may choose to use the information on this page to engage and coach your child in growing or maintaining their own friendships after an IBD diagnosis. In short, parents may not be able to relate to this post in the same way as my previous posts, but I’m optimistic that something will still be gained by sharing my personal story. I’m excited for the IBD Connect community to gain a little more insight on how my experiences helped to shape the vision for Emily’s Gut Check.
 
Before we begin, I wanted to mention a few housekeeping items and disclaimers. First, if you are new to IBD Connect or to Emily’s Gut Check, check out our main website and our support group page that are linked at the bottom of this page. If you have any questions or need further assistance, please reach out to me or to one of the other IBD Connect team members. My email address is linked at the bottom of this page. Also, feel free to read over my previous blog posts for more information about the blog itself and about all things IBD of course! Second, while this post is not heavily medical or clinical like some of my previous posts, please still note that the information on this page is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Please seek the medical advice of your child’s doctor for questions pertaining to your child’s condition or for more detailed information on the topic of IBD. Third, as you read this post, I want you to keep in mind that this is my own personal experience supporting an individual diagnosed with IBD. Every individual with IBD is different, and some of the tips or tricks that I will share may not be beneficial for everyone. This post is intended for general guidance only. If you feel as though professional medical, psychiatric, or physiological help is necessary for you, your child, or a friend, please seek out the necessary professionals, such as a medical doctor, psychiatrist, or licensed therapist for assistance. Now let’s dive in!

Background 

To begin, I wanted to just provide a brief overview of my relationship with Randi Renfro, Lisa’s daughter. Randi was diagnosed with Crohn’s disease at a very early age. She is very open to discussing her diagnosis and the impact it has had on her life, and she has given me permission to discuss her story a little more in this post. If you’ve been following my blog, you know that I have actually interviewed Randi for one of my blog posts. Randi provides a great overview of her IBD journey, starting from her diagnosis at a very early age and ending with her career as a registered nurse. In the interview, we discussed how IBD impacted her physically, emotionally, mentally, and socially, and we covered topics like dating, friendships, 504 plans, and college. The link to Randi’s interview is at the bottom of this page for those of you who are interested in taking a look.
 
I met Randi while we were both in middle school. We were in the same grade, and we had many of the same friends so we would occasionally interact in school, but we were not very close. While in middle school, I had noticed some things that seemed to make Randi “stick out” from our peers. For example, I noticed that Randi seemed to miss a lot of school. I also noticed that if we were going on a class field trip, usually one of Randi’s parents was a chaperone. I know a lot of parents worry about their child with IBD not fitting in or “sticking out” from classmates. I cannot speak for every child, but I can confidently tell you that personally, these differences did not leave much of an impression on me. I’m not saying that I didn’t notice differences, but I wasn’t focused on them. And they certainly did not change how I interacted with Randi. I do not remember a specific moment in which I learned that Randi had Crohn’s disease. There certainly wasn’t an earth-shattering, lightbulb moment in which everything about Randi’s differences made sense. I’m not even sure if I found out from her or if I casually heard about it through other friends or classmates. I definitely remember that I knew she had Crohn’s disease before we entered high school. However, at that time, the phrase “Crohn’s disease” did not mean anything to me. I had a vague understanding that people with Crohn’s disease needed to go to the bathroom more and were frequently tired. That was the extent of my understanding before entering high school.
 
When high school started, Randi’s main friend group and my main friend group essentially merged, and suddenly Randi and I were hanging out in group settings much more frequently. I remember that Randi was usually open to talking about her Crohn’s disease. She would crack a “poop” joke or mention she had an infusion coming up. Crohn’s was typically discussed within our friend group in a casual manner. We didn’t shy away from the topic, but we didn’t talk too deeply about it either when we were in a group setting. Towards the end of high school, Randi and I started to hang out more individually, separate from our friend group. We have a lot of similarities in terms of personality, world view, and interests, and thus, our friendship organically blossomed. We were both interested in becoming registered nurses, which was a shared goal that really bonded us. As our friendship grew, I began to learn more about how Crohn’s disease was affecting Randi. She would talk more openly and deeply about her feelings. Because I was also now interested in Crohn’s disease from a medical perspective as well, I began to do a lot of research on IBD. I didn’t want to be ill-equip at helping Randi process her feelings or be lost in a conversation about a medical concept that I didn’t understand. I wanted to be there for her. Eventually, we became extremely close, and Randi would talk very openly about her feelings in terms of Crohn’s disease with me. We both went to the same college for nursing and graduated together. I actually married her older brother post-graduation so we are now sisters-in-law!

Practical tips

Now that you know a little bit more of my backstory with my friendship with Randi, I just wanted to share some practical tips for how I personally went about supporting her as she navigated her IBD journey. Please keep in mind that if you are a friend of an IBD warrior and reading this blog post for advice, everybody is different. What works for Randi, may not work for your friend. These are just general suggestions. Open, honest communication is always best to determine how your friend wants to be supported.
 
  • Take time to learn about IBD. I think something that really made a difference in my journey supporting Randi as a friend was taking the time to really research IBD. In my case, it helped that I had an interest in becoming a registered nurse so learning about different diagnoses was already fascinating to me. Leaning about IBD helped me to build confidence in talking with Randi about her disease. Gaining knowledge in this topic definitely made our conversations about Crohn’s disease go more smoothly, and it really helped me to appreciate the depths of what she was battling.
  • Don’t offer unsolicited advice. Some people feel the need to offer their personal opinion or advice for handling IBD. I found that this can be upsetting for the diagnosed individual. Usually, the advice is coming from a place of ignorance or lack of understanding, which can lead the diagnosed individual to feel isolated and misunderstood. For example, do not offer diet advice or opinions on potential “cures” for IBD. There is no cure for IBD, and suggesting that there is one can lead to emotions ranging from mild annoyance to feelings of anger, hurt, or loneliness. For more information on myths regarding IBD, you can check out my last blog post! In general, just stay away from sharing your opinions, especially if you haven’t done any research. The individual with IBD has a whole team of doctors and healthcare providers they can turn to for advice. What they need from others is support and encouragement.
  • Don’t be afraid to talk about the IBD diagnosis. As previously mentioned, everyone is different. More often than not, however, I find that treating an individual’s IBD diagnosis like taboo is not the best approach to curating a supportive friendship. Some individuals with IBD enjoy talking about their diagnosis or answering questions because it helps them feel as though what they are going through is real. It can be validating. So ask appropriate questions and engage in meaningful conversations! To Randi’s credit, she set a tone that made me feel comfortable bringing up IBD in casual conversation; she never kept her diagnosis a secret. As a warning, I will say there is a difference between casual conversation about IBD between friends or even in a group setting versus a serious heart-to-heart conversation about innermost thoughts and fears. Please use discretion and follow their lead!
  • Take their cues. I know I mentioned in the previous tip that you shouldn’t be afraid to bring up IBD in conversation, however, you should also follow your friend’s cues in doing so. For example, if your friend is dodging questions about IBD or doesn’t seem fully engaged, maybe it is time to drop the topic. They may be feeling especially fatigued that day or maybe IBD is all they have been thinking about lately, and they would rather be distracted with something fun. An individual with IBD is so much more than their diagnosis and sometimes their diagnosis is the last thing they want to think about! In general, don’t be afraid to bring up the topic of IBD or ask questions, but take your friend’s cues and know when to change topics.
  • Use humor. Some individuals with IBD really appreciate humor in light of their diagnosis. With Randi, I find that using humor and making some “poop” jokes can really lighten her mood. Of course, you have to be able to read the situation and use humor when you feel as though it is appropriate!
  • Give them space to talk and share their feelings. Sometimes all a patient with IBD wants to do is vent. You can provide your friend a safe space to share their feelings openly and honestly without fear of judgement. When Randi feels like venting, I often find it is best not to try to “fix” the problem. I realized rather quickly that there was no way that I could possibly “fix” her Crohn’s or any of the inconveniences that come with Crohn’s. If Randi happens to ask me for practical solutions to a problem, that is when I share my opinion or offer my perspective. Sometimes though an IBD patient just wants someone to truly listen to them and commiserate with them. Be that person!
  • Don’t belittle IBD by comparing it to IBS, food intolerance, food allergies, etc. I personally have IBS so I can attest to the fact that IBS and IBD are definitely not the same. This ties back into being willing to educate yourself on IBD! IBD is so much more than just a “poop” disease. For more information, you can check out my former blog posts on IBD and myths regarding IBD. I’m not saying that IBS or any other disorder is easy, but IBD is in a different realm.
  • Give them grace. If your friend needs to cancel plans last minute or maybe forgets something that was important to you, please give them grace. Your friend may be battling symptoms like fatigue, pain, diarrhea, etc., and it may have hit suddenly. Do not judge your friend for cancelled plans. They are juggling a lot at once and chances are they feel absolutely horrible for cancelling last minute. Give them assurance that you will not abandon the friendship and let them know you are there for support and encouragement.
  • Keep them in the loop if they are missing an event. Spend time with them. This one applies more so to individuals who are still in school. I remember filling Randi in on the details surrounding meetups with friends or school events that she may have had to miss due to Crohn’s. It would help her feel more connected to the friend group or to a particular club or event at school. IBD can be extremely isolating! It is for this reason that spending intentional time with them is also a great way you can support your IBD warrior.
  • Be honest. In order to be a supportive friend, you should be an honest friend. If you do not know how to be supportive or what your friend needs at any given moment, just ask! There are several times that I have asked Randi: “What do you need from me right now in this moment?” or “Would it help if I did this?” If your friend starts talking about IBD and you aren’t sure about how a medical test will be performed or what the side effects of a new medication are, just ask! Chances are, they would be more than happy to fill you in on the details. If not, apologize for misreading cues and/or overstepping boundaries. In general, I have found that having an honest, open dialogue regarding IBD is one of the best ways that you can be a supportive, encouraging friend.
 
The above tips are meant to be general guidelines for supporting a friend with IBD. If you do happen to develop a close friendship with someone affected by IBD or someone you were already close to was recently diagnosed with IBD, you can take these practical tips and then curate them to fit that individual’s needs. For example, in high school Randi was on a medication that required hospital infusions. One of the ways I spent time with her intentionally and showed her support is by accompanying her to infusions occasionally. We watched movies, played games, and talked during infusions. Sometimes she would nap, and I would catch up on homework or read a book. I also think it’s worth mentioning that the more time you spend with the individual, the easier it will be to determine how they would like to be supported. You’ll feel more confident in determining when you should be a shoulder to cry on, when your friend needs to vent, when they want to talk about anything other than IBD, or when using humor is appropriate. I found this was true with my relationship with Randi. The closer we grew as friends, the more I could appreciate how Crohn’s affected her everyday life and the more I grew to understand how she wanted to be supported. In closing, there are so many ways to practically support a friend with IBD. Every individual is unique, and the best way you can grow in supporting an IBD warrior is by honest, open communication. I included a video below where a Crohn’s patient explains ways that she feels supported by her friends. I included this video to give perspective on this topic from an actual IBD patient. Just keep in mind that every IBD patient is different!

I hope you enjoyed my personal story and the practical tips that I’ve learned  over the years as I seek to support Randi and her diagnosis. Feel free to leave any other practical tips or suggestions for support in the comments below! If you have any questions or have any ideas for future blog posts, please don’t hesitate to email me. As always, stay strong IBD Warriors/IBD Warrior parents/IBD Warrior friends!
IBD Connect Main Website
IBD Connect Support Groups
Randi's Interview
Emily's Email
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<![CDATA[Common Myths About IBD]]>Fri, 14 Apr 2023 04:00:00 GMThttp://ibdconnectinc.org/blog/common-myths-about-ibd
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Welcome back to Emily’s Gut Check! Today we will be discussing some of the common myths and misconceptions regarding IBD, a topic that I have been looking forward to writing about for quite some time. There were several reasons that I was excited to introduce this topic. First, receiving a diagnosis of Crohn’s disease or ulcerative colitis for your child is in itself overwhelming and frustrating. Sometimes it can be hard to separate the real facts about IBD from the false information that circulates. Sometimes parents of children diagnosed with IBD can receive unsolicited opinions or even a misrepresentation of the facts from well-meaning individuals, especially early in the diagnosis. Second, I hope to spread awareness to those individuals who may believe one of the myths below. It’s always good to learn something new! Third, if you are a parent that is already very familiar with IBD, you may be able to take solace in the fact that there are others who don’t believe these misconceptions and understand how IBD works. Hopefully you can experience some camaraderie with other IBD Warrior parents. Before we begin, I wanted to make it known that I included a video that provides a brief overview of IBD at the bottom of this page for anyone who may benefit from it. So let’s dive into some of the common myths and misconceptions about IBD together!
 
Myth #1: Diet is the cause of IBD.
What you eat on a day to day basis certainly is not the cause of IBD! Unfortunately, the exact cause of IBD is unknown. We do know, however, that the disease is a result of immune system dysregulation. In a patient with IBD, the individual’s immune system develops an overactive, inappropriate immune response to the body’s own GI tract.[1] The most widely believed theory is that IBD is the result of an environmental trigger that sparks this inappropriate, uncontrolled immune response in a genetically prone individual.[2] We do know that IBD does occur more frequently in family members with IBD.[3] Despite what the research says, many people still tend to believe that diet is the initial spark that can cause IBD to manifest. This may be because certain foods can exacerbate IBD symptoms in an individual that is already diagnosed with IBD.
 
Myth #2: Stress is the cause of IBD.
Once again, IBD is caused by immune system dysregulation. While it is true that stress can certainly trigger IBD flares and/or exacerbate IBD symptoms, stress in itself is not the cause of IBD. The same is true regarding diet (see above), air pollution, and smoking.
 
Myth #3: IBD and IBS are the same thing.
IBD and IBS are often confused with one another. It is easy to see where the confusion lays, as both have similar acronyms and can cause similar symptoms. However, IBD and IBS are very different conditions. IBD stands for inflammatory bowel disease, which by definition is a disease of immune system dysregulation that results in a chronic inflammation of the GI tract. This chronic inflammation can lead to tissue destruction and damage to the GI tract.[4] IBS, on the other hand, stands for irritable bowel syndrome, which manifests as a collection of symptoms that can closely resemble symptoms of IBD. However, IBS is a disorder of gut/brain interaction and does not cause any digestive system damage.[5] To complicate matters even further, in the past IBS was referred to as “colitis,” and we all know that ulcerative colitis is one of the two different types of IBD!
 
Myth #4: Diet and/or surgery will cure IBD.
Unfortunately, there is no cure for IBD, but there are periods of time that the disease is in remission and symptoms are reduced. There are several treatment options that can increase the length of remission, and diet and surgery can certainly be part of the treatment plan. The goals of treatment are to rest the bowel and to control the inflammation that IBD causes. Other goals of care include: preventing and/or treating infection, correcting malnutrition if present, alleviating stress, and improving overall quality of life. [6] These goals can be achieved not only through diet and surgery, but also through medication therapy, rest, and counseling/support groups. In short, diet and surgery will not cure IBD, but they can certainly help an IBD patient to achieve and/or lengthen remission.
 
Myth #5: IBD only causes digestive system or “gut” symptoms.
It is very common to assume that IBD only causes digestive system or “gut” symptoms. However, patients with IBD can also experience what is called extraintestinal manifestations, or symptoms that can happen outside of the intestine. These symptoms can be experienced in the skin, eyes, joints, kidneys, liver, and bones.[7] For example, an IBD patient may have osteoporosis as a result of an extraintestinal manifestation of the bones. Another IBD patient may have frequent kidney stones as a result of an extraintestinal manifestation of the kidneys. Still another IBD patient may have arthritis due to an extranational manifestation of the joints. Patients can also suffer from other systemic complications such as anemia, dehydration, and malnutrition.
 
Myth #6: IBD is just a “poop” disease and can’t be that serious.
As mentioned above under Myth #5, IBD can cause symptoms that manifest outside of the digestive system, which discredits the first part of this myth. As for the second part, there are certainly complications of IBD that can lead a patient to be in critical condition thus an IBD diagnosis should not be taken lightly. Local complications, or complications that affect the GI tract, can include:
  • Hemorrhage
  • Strictures
  • Perforation
  • Abscesses
  • Fistulas
  • C. difficile infection
  • Toxic megacolon
 
There are also systemic complications, or extraintestinal complications, which can include:
  • Skin, eye, and joint inflammation
  • Mouth ulcers (in those with Crohn’s disease)
  • Gallstones
  • Kidney stones
  • Liver disease
  • Osteoporosis
  • Blood clots
  • Dehydration
  • Malnutrition
 
Several of the local and systemic complications listed above can become life-threatening without proper medical treatment. Emergency interventions may need to be implemented. Additionally, IBD can increase the risk for developing colon cancer and certain IBD medications may lead to serious side effects. Overall, it is best practice to follow the medical advice of your child’s doctors to prevent these serious complications. IBD is so much more than just a “poop” disease.
 
Myth #7: All IBD patients will need surgery and/or have a stoma.
Not everyone with IBD will require surgery. Surgery is just one strategy for IBD management in certain individuals. Patients with IBD undergo surgery for several different reasons. Some patients may stop responding to medication therapy. For others, surgery may improve quality of life. Some IBD patients may need emergency surgery. There are also several different types of surgeries that can be performed for IBD patients, meaning not everyone that requires surgery for IBD will get the same procedure. Some procedures do not create an ostomy!
 
Myth #8: If you have surgery to create an ostomy, you will have the ostomy for life.
This myth is partially true. Every IBD case is unique. In general, there are several different types of surgeries that an IBD patient could theoretically have. If surgery is advised, the type of surgery recommended is based on your child’s clinical presentation and the doctor’s best judgement. If your child’s doctor recommends surgery to help treat IBD, sometimes, a temporary ostomy is sufficient to allow the bowel to rest. The ostomy may be able to be reversed, usually at least 3 months after the procedure. In other cases, a doctor may recommended a permanent ostomy with no plans for ostomy reversal. As I stated earlier, there are several different types of surgeries to help treat IBD, and each IBD case should be approached individually.
 
Myth #9: If you have IBD, you will not be able to live like “normal people.”
While IBD is a very serious disease, it is still entirely possible to live a “normal” life! I use that term loosely because the definition of “normal” is so subjective. In general, sticking with the treatment plans prescribed by your child’s doctor will give your child the best possible chance of achieving and staying in remission. It is important to note, however, that your child may not always feel “normal” with IBD. Things like needing to find a bathroom urgently or packing medications for a sleepover may make your child feel as though they are “sticking out” among their peers. Therapy and/or support groups are a great place safe space for your child to communicate some of their feelings.
 
I hope the information on this page was useful in breaking down some of the most common myths about IBD. As always, please do not use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor! I also just wanted to remind everyone that that there are options for IBD support. The links for the IBD Connect main page and support group pages are listed below. If you have any questions for me or if you want to venture a topic for a future blog post, feel free to email me at my email address listed below! As always, stay strong IBD Warriors/IBD Warrior parents!

[1] Lewis, Sharon et al., Medical-Surgical Nursing: Assessment and Management of Clinical Problems (St. Louis, Missouri: Elsevier, 2017), 944.
[2] Sudabeh Alatab et al., The Global, Regional, and National Burden of Inflammatory Bowel Disease in 195 Countries and Territories, 1990–2017: A Systematic Analysis for the Global Burden of Disease Study 2017
[3] Lewis et al., 944.
[4] Lewis et al., 944.
[5] Definition and Facts for Irritable Bowel Syndrome
[6] Lewis et al., 946.
[7] Rogler et al., Extraintestinal Manifestations of Inflammatory Bowel Disease: Current Concepts, Treatment, and Implications for Disease Management


Bibliography 

Alatab, Sudabeh, Sadaf G Sepanlou, Kevin Ikuta, Homayoon Vahedi, Catherine Bisignano, Saeid Safiri, Anahita
Sadeghi, et al. “The Global, Regional, and National Burden of Inflammatory Bowel Disease in 195 Countries and Territories, 1990–2017: A Systematic Analysis for the Global Burden of Disease Study 2017.” 
The Lancet Gastroenterology & Hepatology 5, no. 1 (2020): 17–30. https://doi.org/10.1016/s2468-1253(19)30333-4.

“Definition & Facts for Irritable Bowel Syndrome - NIDDK.” National Institute of Diabetes and Digestive and Kidney Diseases. U.S. Department of Health and Human Services. Accessed April 6, 2023. https://www.niddk.nih.gov/health-information/digestive-diseases/irritable-bowel-syndrome/definition-facts.

Lewis, Sharon Mantik, Linda Bucher, Margaret McLean Heitkemper, and Mariann M. Harding. Medical-Surgical Nursing: Assessment and Management of Clinical Problems. St. Louis (Miss.): Elsevier, 2017.

Rogler, Gerhard, Abha Singh, Arthur Kavanaugh, and David T. Rubin. “Extraintestinal Manifestations of Inflammatory Bowel Disease: Current Concepts, Treatment, and Implications for Disease Management.” Gastroenterology 161, no. 4 (2021): 1118–32. https://doi.org/10.1053/j.gastro.2021.07.042.
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<![CDATA[Growing up with IBD: An Interview with Randi Renfro]]>Fri, 24 Mar 2023 04:00:00 GMThttp://ibdconnectinc.org/blog/growing-up-with-ibd-an-interview-with-randi-renfro
Hello everyone! My name is Emily Fournier, and I am the author of Emily’s Gut Check! I am a wife, mom, and registered nurse who is passionate about combining medical knowledge with a desire to holistically support parents of children with IBD. This post is special because I decided to interview one of our very own IBD Warriors, Randi Renfro (Fournier). Randi has had over 20 years of experience with IBD; she started having IBD symptoms at just 4 years old. If her name sounds familiar, that is because she is one of Lisa’s daughters and a member of the IBD Connect Board of Directors! I was able to send some questions to Randi, and she types out her answers for us. In this interview, Randi answers questions about the physical, social, emotional, and mental impact that IBD has had on her life. We discuss growing up with IBD, making the transition to college, and starting her career as a registered nurse. She even shares advice she has for parents of children with IBD. With her personal experience living with Crohn’s disease for the majority of her life, as well as her experience as a registered nurse, Randi has a wealth of information about IBD. I hope you enjoy the interview!
 
Also, if you haven’t read it already, check out my first post, “What is IBD?” This post provides a broad overview of IBD, including information on symptoms, diagnosis, prevalence, complications, and treatment options. It serves as a great starting ground for IBD research and knowledge. However, as I stated in the last post, my blog is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Please seek the medical advice of your child’s doctor for questions pertaining to your child’s condition or for more detailed information on the topic of IBD. Without further ado, let’s get started!
 
Can you please introduce yourself? Give us a little bit of background about who you are! 
My name is Randi, I am 24 years old, and I am a Registered Nurse. I grew up in Massachusetts, but moved to Colorado with my husband in June of 2022. We are now expecting our first child, a baby girl, in July! My mom is Lisa Fournier, who most know and love for IBD Connect Inc. Both my mom and dad were very involved in my childhood. I have two older brothers, and an older sister. My sister was very supportive of my illness growing up, and was diagnosed late in life with Crohn’s. I am very family-oriented, enjoy hanging out with friends and the outdoors, and love to support others with IBD. 
 
When were you diagnosed with IBD? Were you diagnosed with Crohn’s disease or ulcerative colitis? How old were you? Do you remember the circumstances surrounding your diagnosis (i.e. how you were told, how you felt at the time, etc.)? If so, please describe that for us. 
I was originally four years old when I got sick. I do not remember much, but hear I missed a lot of Kindergarten. I was not officially diagnosed until I was six, and was diagnosed with Ulcerative Colitis. I do not remember any specific feelings as I was so young, but I have very specific memories. One I remember is my mom carrying me into school midday to pick up packets of work to do at home. Another is being hospitalized and the saline flush hurting me, so the nurse let me do it slowly to not hurt. I stayed sick despite trying medication after medication, so continued to have frequent hospital trips. It was not until I was nearly 12 years old that I was diagnosed with Crohn’s instead, and tried a new course of treatment.
 
If you feel comfortable sharing, what areas of your GI tract have been affected by Crohn’s disease? Where is your inflammation located? 
It depends on the time period. Early on, most of my small and large intestines were inflamed. I had many issues getting control. After starting new treatment on a class of medication called biologics, I only gained remission temporarily. Once out of remission, I was not super sick, but had symptoms. This is when most of my disease was in my descending colon and rectum. This area has remained a problem area for me. 
 
What has your treatment looked like over the years? What medications have you been on? Have you had any surgeries related to IBD? 
It has been a bit chaotic. I do remember the very first medication I tried. It was sulfasalazine, a standard first line drug, and was allergic to it. After that, I flew through the classes of medications, none really working. I specifically remember many of the aminosalicylates; pentasa, asacol, and colazol. I was on and off steroids like prednisone and entecort, as well as steroid suppositories and enemas. Some of the medications I tried, I was part of trials for since they were newer and not used in children. I went from crushing pills and opening capsules, to swallowing 10-15 pills a day. I tried probiotics alongside medications, and diet changes. I have never had surgeries related to IBD, but countless colonoscopies/endoscopies with biopsies, pill capsule studies, and MRIs. 
 
Let’s take a trip down memory lane. You said you originally got sick when you were 4 years old. Do you remember how you felt starting elementary school? How do you feel like Crohn’s disease impacted your elementary school years?
I don’t remember much of elementary school with it. As said earlier, I remember very specific memories that were impacted by IBD, but not general feelings. I remember not wanting to talk to my first grade classmates, so I pretended to sleep on my moms shoulder. I am sure I did not want to answer questions about my illness, but did not know how to express it. Later in elementary, other symptoms appeared and I remember frequently being stressed about going to the nurse for pills, or leaving for a long time to the bathroom. 
 
As you got older and began transitioning to middle school and even high school, how do you feel like Crohn’s impacted your learning and education? Did it? 
I remember more of this time period than my younger years. Middle school was difficult and I averaged about 50 missed days per school year. This was when I had to get a home tutor to keep up with school work, and really felt stressed about falling behind. I think being sick and not having a lot of control during this time, brought about different anxieties with school. I attempted to gain my control in other areas; I was very diligent about not falling behind in work. I would often stay after even if I understood topics just to make sure I would not fall behind. I think IBD made me work extra hard and brought about a lot of unnecessary stress surrounding my education. 
 
Did you have any special accommodations in school, like a 504 plan? If so, do you feel like you benefitted from these accommodations? 
I did have a 504 from a very young age. I believe it started in late elementary or first year of middle school. I was very indifferent about having it in place. I did not want to feel different and was often anxious about my mom meeting with teachers and “highlighting” my IBD. However, the actual accommodations were extremely helpful and took other anxieties surrounding my illness away. Being able to leave class without questions being asked, extended time on exams to accommodate for bathroom breaks, and unlimited access to water were all super helpful. 
 
How do you feel Crohn’s impacted you socially? Any trouble making or keeping friendships? Dating?
This is rather difficult, because my anxiety in general made things difficult, and it is hard to say whether that anxiety stemmed from IBD or just on its own. I definitely was very quiet throughout all of my schooling. I was loud and crazy with my select friends, but it took breaking through the shy shell to get to that point. I did have many friends, but it was a tight group of them. I was often anxious around larger groups or more “popular” crowds in school. I was very comfortable with my IBD, mainly from growing up with it, and I think that helped with long-term friendships. I had some friends who would come to my IV infusions, and made a fun day of missing school doing it. Most knew my illness was often focused on poop, and I tried to help lighten the topic around it with humor. As I got older and entered dating relationships in highschool, I found that not hiding it made it easier. If they knew right away, it was not an anxiety-provoking secret. I usually opened up by saying to NOT google it, but let me explain. This did not always work, but I then gave my perspective and could answer questions. 
 
Let’s talk mental health. As you were growing up with Crohn’s disease, how was your mental health impacted? What strategies, if any, did you use to cope?
I think IBD brought forward many anxieties, that then turned to more of OCD/general anxiety. By losing a lot of my control of my own body at a young age, I gained control elsewhere. I remember being very specific about picking out clothes for school, and if weather changed, I would have full panic attacks about it. Later in middle school, I was often anxious speaking in class or to people that weren’t my friends. I hated a spotlight, which is very unusual for me, and I think that stemmed from the spotlight on me at home and at doctors. In high school, things got even worse. I often went to the counselor at school during classes as my anxiety would spike. I ate with the counselor, and really struggled falling asleep at night. I began seeing a therapist outside of school and later started anxiety medication. Many of my strategies came from my counselor and therapist. I often talked through where I thought the anxiety was coming from, and it was often my fear of being different and not liked. However, I never directly had this experience. I had not been highly bullied, and my friends were supported, but I knew how mean kids could be and struggled so much. Once on medication and years of therapy, I was able to have a lot of coping strategies that are not always needed now. Everyone is different, but I think any chronic illness can bring about anxiety and depression, even if you do not directly see the connection. There are underlying fears and anxieties around the illness that are displayed in different ways, and different coping strategies will be needed. 
 
You don’t have to go into details, but at any point as you were growing up, were you embarrassed or ashamed of your IBD? If so, how did you navigate this?
Oh gosh yes! This disease is centered around poop. As a teen, this is especially embarrassing. I remember field trips where bathrooms were not readily available and having to awkwardly pull buses full of students off the highway to get to a rest stop. Everyone stared as I ran off the bus to explode. I remember being with my dad at a mall and having a full accident. I ran through the mall with diarrhea running down my legs…and it was my dad that had to buy new things for me. Then there was the bloating, gas, steroids making me fat, etc. I do not think there are any good ways to navigate it, but ways to learn from these things and other’s experiences. I started having my mom drive to field trips as a designated chaperone, but also taking friends in the car with me for more fun. I started carrying extra underwear and pants if I knew places would not have bathrooms close together. I would look up where bathrooms were wherever we were going. Then, as I went to Camp Oasis, I learned from other people’s stories of embarrassment and was in a safe place to express my own and find humor with other people like me. 
 
Please give us some details about how you made the transition to college. Did you change where you received medical care for Crohn’s disease? Did you feel like the transition to college was particularly stressful? How did you navigate your newfound independence in relation to your IBD journey?
This transition was wild, but I was SO ready to not have my mom control my illness. However, I quickly learned I needed to ask a lot questions. When I went to college, I was also at the point to find an adult GI, so I did transition my care as well. I asked my pedi GI for recommendations, and found one close to my college to go to. This is when I started going to appointments alone, but I liked being able to talk freely and not feel like I needed someone to describe things for me. I also learned a lot by having to take over discussing symptoms; I had to actually say what was going on and ask the questions about medications that my mom usually did. I definitely struggled a lot, but my mom tried to give me as much freedom as possible. I often updated her after appts and got to clarify things that way. There was also a physical and mental health component to the transition. Any big change brings about flare-ups for me, and college was no different. I luckily had Emily as a close friend on campus with me. I could confide in her when I was not well. I quickly tried to make other close friends so that if I had to miss class, I had a friend in each one that knew what was going on and could get notes for me. I had the added stress of adjusting to being away from home, the independence of my managing my schedule, and juggling my illness. I do not think I had a specific way of navigating all of this; I just learned as I went. I knew I wanted my education, and I knew I needed to prioritize my health. I went to as many classes as I could, but I made sure to miss a class or two if I needed to sleep and catch up on rest. With this, I also found friends to study with and learned office hours, so I could clarify things I missed. I did prioritize education and health, so often did not have many social activities going on. I did not party or stay up late, but the friends I found were similar to this and helped me not feel like I was alone in this. Lastly, I had to adjust to food. The food on campus often was not helpful to my IBD. Starting my second year, I got housing with a kitchen and had to get an on-campus job so I could buy some groceries. I found friends to live with that also wanted to cook so that we could split groceries. I was able to cook things that were better for my Crohn’s, and this helped. It was a huge learning curve, but I am so glad I pushed through the flare-ups to figure out my independence. 
 
While you were in college, were you able to receive any type of learning accommodations? Did you feel as though Crohn’s disease impacted your education? 
I did have a continued 504 in college. I was able to adjust things, and it was much more formal/restrictive than in high school. I was able to still get testing accommodations where I would be in a different small group. This allowed me to have extended time and leave for the bathroom during exams. Normally you cannot leave at all, but this helped take that stress away since I had more time and could step out. Knowing this was in place often took the stress away, and made it so I did not need to step out. I don’t think it impacted much of my college education. The professors did not care as much about whether you showed up or not, and I was able to still get notes as friends helped me or they posted lectures online. I think making my own schedule and planning times of rest helped me stay on top of things better. 
 
Post college graduation, do you feel like IBD has impacted your career? In what way?
I am not really sure on this one. I jumped into the typical nurse schedule of three 12 hour shifts per week, and that was definitely hard. I did not tell my employers during interviews that I had IBD, but that was a personal choice. I did become familiar with sick time policies. I was probably more fatigued from long shifts than others, but my body adjusted and I learned tips and tricks to help. 
 
When looking back on your childhood, is there anything that you wished you had done differently in relation to growing up with IBD? Anything you wish you did more of? Anything you feel like you or your family did well?
I wish I was not as anxious as I was. When not in school, I was loud and fun, but hid that side. I think this held me back from other friendships I could have made. I always wanted to be carefree, but couldn’t. I am thankful for having IBD, though, because I learned to prioritize myself and my needs. My family was great at making me feel “normal.” Obviously, there were times I wanted them to just stop talking about IBD, but they always found ways to work with my symptoms while still doing outings and trips. This greatly helped with not feeling secluded. 
 
Lastly, do you have any advice or words of assurance to give to parents of children recently diagnosed with IBD? Any final thoughts or comments? 
It is scary and unknown. You will feel that you are losing so much when newly diagnosed, but that does change. Try not to focus on what you child now cannot do, because it is temporary. Once healthy, we can do everything others can, if not more! It is extremely stressful, but we adjust and learn from everything that happens. I think I am more responsible, empathetic, and wise due to having IBD. However, I did not lose the fun side of life; I go on trips, have groups of friends, and find so many good things in life. For final thoughts…just reach out! If you or your child are struggling, you will find someone who has been through similar. I am always here to talk, listen, or give advice. Everyone within IBD Connect is as well! I have lots of first-hand experience and would love to help you navigate this wild journey. 

This concludes our interview! Randi’s answers to my questions speak for themselves; growing up with IBD can be challenging. It can impact many different areas of your child’s life. Having a solid support system can make a huge difference! If you’re interested in an IBD Connect support group, the link to get more information is linked below. If you have a question or need guidance, you can always email me as well, and I can help you to get connected. My email address is also linked below. It is my hope that you were able to gain something from this interview, whether it be one of Randi’s helpful tips you can implement, laughter from one of her stories, or simply the comfort in the knowledge that there are others who grow up with IBD. As always, feel free to email me with any questions or topics that you want covered in a future blog post. Thank you Randi for a great interview! Stay strong IBD Warriors/IBD Warrior parents!

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<![CDATA[What is IBD?]]>Fri, 10 Mar 2023 05:00:00 GMThttp://ibdconnectinc.org/blog/what-is-ibdPicture
Welcome to the first official post on Emily's Gut Check! In case you missed the blog announcement on the IBD Connect main website page, I wanted to start this post by giving you some background information about myself. My name is Emily, and I am a wife, mom, and registered nurse with a background in intensive care and community health nursing. Throughout my nursing career, I have had several opportunities to care for both children and adults diagnosed with IBD. These patient and family interactions have allowed me to gain a thorough understanding of IBD from a medical perspective. However, through​  my friendship with Lisa’s daughter Randi, I have also been able to observe the effects of IBD from a more personal, holistic viewpoint. Randi was diagnosed with Crohn’s disease as a young child, and my friendship with her has allowed me to understand that IBD can really impact every area of a child’s life, whether it be physically, mentally, socially, or emotionally . With Emily's Gut Check, I hope to combine my medical expertise and education with my desire to holistically support parents of children with IBD. Here you will find current evidence-based IBD research, tips for certain diagnostic tests and procedures, interviews with IBD patients and family members, nutrition information, and hopefully support and encouragement for you and your child’s IBD journey!
 
Without further ado, I want to dive into our first topic, a topic I believe is a great starting ground for this blog: What is IBD? For some, this topic may be a bit dry. You have had several years of experience parenting a child with IBD; you certainly know what it is! However, for others, this topic is exactly what you need. Your child was just diagnosed with IBD, and you are looking for a starting ground to conduct your research. Maybe others just need a reminder of how IBD is diagnosed or what treatment options are available. No matter where you and your child are in your IBD journey, I hope you gain something out of this post!

 
About 7 million people worldwide have been diagnosed with inflammatory bowel disease, or IBD.[1] Although IBD is not necessarily a common disease, the Center for Disease Control and Prevention (2020) notes that over the last twenty years, there has been an increase in the number of individuals with the diagnosis.[2] Perhaps your child is one of these individuals. As a parent, a diagnosis of IBD for your child can be incredibly overwhelming and frustrating. Despite the rise in prevalence of IBD, there is still a lot of confusion about the disease. This page is intended to help you demystify some of the many misconceptions about inflammatory bowel disease and provide you with a broad overview of the disease process. What exactly is IBD? What are the symptoms? What causes IBD? How prevalent is it? How is it diagnosed? Are there any complications? How is it treated? Please note that although the information on this page aims to equip you with the fundamental knowledge on the topic of IBD, it is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Please seek the medical advice of your child’s doctor for questions pertaining to your child’s condition or for more detailed information on the topic of IBD.
 
What is IBD?
Inflammatory bowel disease (IBD) is defined as a chronic inflammation of the GI tract.[3] In an individual diagnosed with IBD, the body is triggered to produce an exaggerated, inappropriate immune response that results in GI tract inflammation. IBD is therefore considered to be an autoimmune disease. The resulting prolonged inflammation can cause tissue destruction and damage to the GI tract. IBD is characterized by periods of remission and periods of exacerbation.[4]
 
IBD is classified as either Crohn’s disease or ulcerative colitis based on the clinical manifestations of the disease. Crohn’s disease can affect any part of the GI tract, which includes the mouth to the anus. The affected areas of the GI tract are interspersed between areas of healthy tissue. This is why you may hear Crohn’s disease described as “patchy.” The inflammation from Crohn’s disease may affect all layers of bowel wall. In contrast, ulcerative colitis occurs in the rectum and large intestine (colon). UC usually starts in the rectum and spreads in a continuous fashion further into the colon. The area of inflammation does not extend through all layers of the bowel wall. Instead, the inflammation is found only in the innermost layer.[5] Please see the diagram that highlights the differences between Crohn's disease and ulcerative colitis towards the end of the article.
 
What are the Symptoms of IBD?
Some of the common symptoms of IBD include:
  • Persistent diarrhea
  • Weight loss
  • Fatigue
  • Abdominal pain
  • Bloody stools
 
Please note that this is not a comprehensive list of all IBD symptoms. Additionally, there are some differences in symptoms between the two types of IBD. For example, weight loss is more common in those diagnosed with Crohn’s disease, whereas bloody stools are more prevalent in those diagnosed with ulcerative colitis.[6]
 

What Causes IBD?
Unfortunately, the exact cause of IBD is unknown. However, we do know that the disease is a result of a weakened immune system.[7] In a patient with IBD, the individual’s immune system develops an overactive, inappropriate immune response to the body’s own GI tract.[8] The most widely believed theory is that IBD is the result of an environmental trigger that causes an inappropriate, uncontrolled immune response in a genetically prone individual[9]. We know that IBD occurs more frequently in family members of people with IBD.[10] Of note, many people believe that IBD is caused by diet. While it is true that certain foods can exacerbate symptoms of IBD, a person’s diet is not what initially causes IBD to manifest. The same is true regarding stress, air pollution, and smoking.
 
How Prevalent is IBD?
As mentioned previously, about 7 million people worldwide have IBD.[11] According to the CDC website (2020), “In 2015, an estimated 1.3% of US adults (3 million) reported being diagnosed with IBD (either Crohn’s disease or ulcerative colitis).”[12] How prevalent is an IBD diagnosis in children? One study found that there are about 70,000 children in the United States diagnosed with IBD.[13] This study mentions that the incidence of pediatric IBD in the United States is rising.
 
How is IBD Diagnosed?
In order for IBD to be diagnosed, your doctor will need to collect a full history of your child’s symptoms and complete a physical examination. Your child’s blood will be drawn and a stool sample will be needed for evaluation. Other diseases with similar symptoms must be ruled out first. For example, early symptoms of Crohn’s disease can be similar to symptoms of irritable bowel syndrome (IBS). Other conditions that may be causing symptoms of IBD are iron-deficiency anemia, toxic megacolon, bowel perforation, electrolyte imbalances, and infection. This is not a comprehensive list, and an unlisted condition may be the culprit behind IBD symptoms. You should always discuss symptoms, diagnosis, and treatment plans with your child’s doctor. After other conditions are ruled out, IBD is usually diagnosed based on certain tests, such as endoscopy, enteroscopy, sigmoidoscopy, and/or colonoscopy. Imaging studies (X-ray/CT/MRI) are sometimes necessary and can also be useful in diagnosing IBD.
 
Can There be Complications From IBD?
Patients with IBD can experience both local and systemic complications. Local complications in  IBD patients are defined as complications that are confined to the GI tract, whereas systemic complications are those that occur outside of the GI tract.
 
Local complications can include:
  • Hemorrhage
  • Strictures
  • Perforation
  • Abscesses
  • Fistulas
  • C. difficile infection
  • Toxic megacolon
 
Systemic complications can include:
  • Skin, eye, and joint inflammation
  • Mouth ulcers (in those with Crohn’s disease)
  • Gallstones
  • Kidney stones
  • Liver disease
  • Osteoporosis
  • Blood clots
  • Dehydration
  • Malnutrition
 
IBD can also increase the risk of developing colon cancer. Talk with your child’s doctor about when and how often your child should be screened for colon cancer. Additionally, your child may develop medication side effects from the medications needed to treat IBD.

 
How is IBD Treated?
There is no cure for IBD, although there are periods of time where the disease is in remission. The right treatment plan can increase the length of remission. The goals of treatment for IBD are to rest the bowel and control the inflammation. Other goals of care include: preventing and/or treating infection, correcting malnutrition if present, alleviating stress, and improving quality of life.[14] There are several methods of IBD treatment, which include:
  • Medications
    • Anti-inflammatory drugs
      • Aminosalicylates
      • Corticosteroids
    • Immune system suppressors 
    • Biologics
    • Antibiotics
    • Anti-diarrheal medications
  • Surgical therapy
  • Nutritional therapy
  • Rest
  • Counseling and/or support group if desired
 
Conclusion
IBD is a disease in which the body produces an exaggerated immune response that results in GI tract inflammation. Prolonged inflammation can cause GI tissue damage. This may cause several symptoms, including: persistent diarrhea, weight loss, fatigue, abdominal pain, and bloody stools. An individual diagnosed with IBD can also have both local and systemic complications, as well as experience side effects from medications used for treatment. There is no cure for IBD, but the right treatment plan can increase the number of remission periods, as well as the length of remission. Treatment includes medication management, nutritional therapy, and surgical intervention. If you are a more visual or auditory learner, there is a video linked at the bottom of this page that Mass General Brigham created on the topic of IBD. This video provides a succinct overview of IBD and highlights several of the key points discussed above.  
 
Further Steps

With the incidence of IBD diagnosis in the United States rising, IBD awareness is more important than ever. If you have a child who was recently diagnosed with IBD, the information on this page may be overwhelming. If you feel the need to talk to someone, you can always reach out to me or anyone on the IBD Connect team. The main website and my email address are linked and listed at the bottom of this page. Again, please use this post only as a starting ground or a refresher for your IBD knowledge and research, not as a substitute for a professional opinion. For more detailed information about IBD, please seek out professional medical advice, especially if you have questions pertaining to your child’s unique medical situation or IBD diagnosis. There are options for IBD support so please do not feel alone in this journey!

​If you are willing, please comment below on different strategies that have helped you cope with you or your child’s IBD diagnosis, whether it be connecting with a therapist, joining a support group, journaling your thoughts, or listening to music!

 
If you have questions about IBD Connect or want to connect with a support group, please visit our main website. Links for the main page and the connection group page are linked at the very bottom of this post. We would love to help you! If you have a specific question or a topic you would like discussed in a blog post, feel free to email me at emilyibdconnect@gmail.com. My email is also linked at the very bottom of this page! 

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[1] Sudabeh Alatab et al., The Global, Regional, and National Burden of Inflammatory Bowel Disease in 195 Countries and Territories, 1990–2017: A Systematic Analysis for the Global Burden of Disease Study 2017
[2] Centers for Disease Control and Prevention, World IBD Day-May 19, 2022.
[3] Lewis, Sharon et al., Medical-Surgical Nursing: Assessment and Management of Clinical Problems (St. Louis, Missouri: Elsevier, 2017), 944.
[4] Lewis et al., 944.
[5] Centers for Disease Control and Prevention, What is Inflammatory Bowel Disease?
[6] Lewis, 946.
[7] Centers for Disease Control and Prevention, What is Inflammatory Bowel Disease?
[8] Lewis, 944.
[9] Alatab et al.
[10] Lewis, 944.
[11] Alatab et al.
[12] Centers for Disease Control and Prevention, Prevalence of IBD.
[13] Michael J Rosen., Dhawan Ashish, and Shehzad A. Saeed. Inflammatory Bowel Disease in Children and AdolescentsJAMA Pediatrics 169, no. 11 (2015): 1053
[14] Lewis, 946.


Bibliography 

Alatab, Sudabeh, Sadaf G Sepanlou, Kevin Ikuta, Homayoon Vahedi, Catherine Bisignano, Saeid Safiri, Anahita Sadeghi, et al. “The Global,                 Regional, and National Burden of Inflammatory Bowel Disease in 195 Countries and Territories, 1990–2017: A Systematic Analysis                 for the Global Burden of Disease Study 2017.” The Lancet Gastroenterology & Hepatology 5, no. 1 (2020): 17–30.                                                     https://doi.org/10.1016/s2468-1253(19)30333-4.
Lewis, Sharon Mantik, Linda Bucher, Margaret McLean Heitkemper, and Mariann M. Harding. Medical-Surgical Nursing: Assessment and                            Management of Clinical Problems. St. Louis (Miss.): Elsevier, 2017.
“Prevalence of IBD.” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, April 14,                                                    2022. https://www.cdc.gov/ibd/data-and-statistics/prevalence.html.  
Rosen, Michael J., Ashish Dhawan, and Shehzad A. Saeed. “Inflammatory Bowel Disease in Children and Adolescents.” JAMA Pediatrics 169,              no. 11 (2015): 1053. https://doi.org/10.1001/jamapediatrics.2015.1982.
“What Is Inflammatory Bowel Disease (IBD)?” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention,                   April 13, 2022. https://www.cdc.gov/ibd/what-is-ibd.htm.  
“World IBD Day– May 19, 2022.” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, April 15,                            2022. https://www.cdc.gov/ibd/features/world-ibd-day.html.  


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