<![CDATA[IBD Connect - Blog]]>Thu, 25 Apr 2024 08:18:55 -0400Weebly<![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
]]>
<![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
]]>
<![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
]]>
<![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
IBD Connect Support Groups
Emily's Email
]]>
<![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
]]>
<![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
]]>
<![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

IBD Connect Main Page
IBD Connect Support Group
Emily's Email
]]>
<![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
]]>
<![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
]]>
<![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
]]>