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.

​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!

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!

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  

​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!

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!  

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! ​

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

​Overall, how do you feel as though Randi’s diagnosis impacted your childhood experience? Did you experience any stress or anxiety related to Randi’s condition?  
Reflecting on my childhood, Randi's diagnosis did impact my experiences. The urgency to locate restrooms whenever we ventured out and the tension during flare-ups or unfamiliar outings stand out as sources of stress. Despite this, I don't believe I missed out on childhood pursuits due to Randi's IBD. Our parents made considerable efforts to ensure both of us had fulfilling experiences. Early on especially, the stress was palpable but manageable for our family.
 
In what ways has Randi’s, and now Jaimee’s, resilience and strength in facing IBD influenced or inspired you?
It has inspired me to be an advocate for those suffering from illness or disability. I feel as though much of the reason I am drawn to working with children with autism and advocating for them is because I saw my parents doing this with Randi and her IBD. Her experiences, especially with all the misconceptions and stigmas about the disease, highlight the need to advocate to spread accurate information, reduce stigmas, and provide support to those suffering. Seeing her do this, as well as my mom through IBD Connect, has definitely left its mark on me.
 
What advice would you give to other siblings who are currently navigating similar challenges with a sibling diagnosis of IBD? What advice would you give to parents of multiple children, one child having a diagnosis of IBD?
To fellow siblings navigating the challenges of a sibling's IBD diagnosis, I'd advise them to educate themselves about the condition. This knowledge will enable them to offer effective support and foster greater empathy. Listening, communicating, and expressing empathy to the sibling with IBD is crucial, creating a peer-based bond that complements parental support. Flexibility and practical assistance during flare-ups or medical appointments also goes a long way. Emotional support is equally vital. Lastly, maintaining one's own well-being is essential. While the demands of the sibling with IBD can be consuming, spending time with family and friends during the sibling's healthy periods helps preserve emotional balance.
 
For parents with multiple children, one diagnosed with IBD, I'd encourage open communication among all siblings. Avoid becoming so engrossed in managing the child's IBD that the other siblings' needs are overlooked. Offering individual attention to all children and diversifying the interactions with the sibling with IBD, beyond the context of the condition, is beneficial. Building a unified family environment that nurtures empathy and validates emotions is essential. Initiating family time unrelated to IBD serves as a strong foundation for this approach.
 
This concludes our interview. It is my hope that you are able to find some peace knowing that Bryce currently has healthy relationships with his parents and siblings. An IBD diagnosis in the family is certainly a challenge, but it is possible to work together as a family unit to overcome these challenges by communicating feelings and needs with one another. If you are looking for more information or would like to receive support, please feel free to contact me. My email is linked at the bottom of this page. Even though today’s post was not clinically heavy, I still want to remind everyone not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Before we wrap up this post, I want to give a huge shout out to Bryce. His eagerness to participate in this interview speaks volumes about the heart he has for supporting this cause! And as always, stay strong IBD Warriors/IBD Warrior parents!

Have you ever been explaining your child’s IBD diagnosis to a friend or family member only to receive the reply, “I totally understand what you guys are going through. I have IBS!” You may be frustrated by this response because you know that there are major differences between IBD and IBS. In fact, you can start rattling off a whole laundry list of differences! Or, perhaps you understand that IBS and IBD are two different disorders, but you are not quite sure what the differences are. After your child’s diagnosis, you may feel confident in your understanding of IBD, but what really is IBS? Are there any commonalities between the two disorders? What does IBS even stand for anyways? However you may be feeling in this situation, whether you are angry, annoyed, hurt, or confused, your response to this type of comment matters. You can choose to view moments like these as unique opportunities to spread IBD awareness by politely imparting your knowledge. Remember, common misconceptions are shattered one individual at a time! It is possible to respectfully share knowledge and build a strong connection without belittling or demeaning the individual or their disorder. This page is intended to arm you with some basic knowledge about IBS and IBD, taking care to highlight the similarities and differences between the two disorders.
 
Before we dive into the content, please note that this page is not intended to be a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Additionally, please note that this page provides a brief overview of IBS and IBD and does not discuss these disorders in great detail. If you have any specific questions pertaining to either of these disorders you can always speak with your child’s doctor or another healthcare professional. Now let’s begin!
 
IBS
 
What is IBS?
Irritable bowel syndrome, or IBS, is a functional gastrointestinal disorder characterized by chronic abdominal pain or discomfort and alteration of bowel patterns.[i] Diarrhea or constipation may predominate or alternate. The symptoms of IBS can range from mildly annoying to chronically debilitating, impacting overall quality of life, social life, and an individual’s ability to work or travel. Individuals with IBS may feel less able to take part of normal, daily activities. IBS is fairly common, as it is estimated that around 12% of the United States population has been diagnosed with IBS.[ii] In the past, medical professionals have referred to IBS as IBS colitis, colitis, mucous colitis, spastic colon, spastic bowel, and nervous colon. The antiquated terms “IBS colitis” and “colitis” should not be confused with ulcerative colitis, one type of IBD. The older terminology certainly can contribute to the confusion between IBS and IBD! Unlike IBD, IBS does not cause any digestive system damage, as it is largely a disorder of gut/brain interaction.[iii]
 
What are the Symptoms of IBS?
Common symptoms of IBS include:

• Chronic/persistent abdominal pain
• Mucus in the stool
• Gassiness/flatulence
• Abdominal bloating or abdominal distention
• Sensation of feeling full
• Change in stool frequency
• Change in stool appearance
• Nausea
• Urgency
• Sensation of incomplete evacuation
• Non GI symptoms: fatigue, headache, sleep disturbances

 
What Causes IBS?
Just like with IBD, the exact cause of IBS is unknown. Psychological stressors, such as depression, anxiety, physical/sexual abuse, and PTSD, are associated with the development and exacerbation of IBS symptoms. However, there is a significant amount of researching pointing to the fact that IBS is a disorder caused by a disturbance between the brain and the gut, [iv] meaning that there are poorly coordinated signals between the brain and the intestines. This can cause the body of an individual with IBS to “overreact” to the typical digestive process, leading to many of the common IBS symptoms. Additionally, individuals with IBS typically have overactive muscle contractions in the intestines. The walls of the intestines are lined with layers of muscle, and the contractions of these muscles help to move food through the digestive tract. In an individual with IBS, the contractions can last longer and be stronger, which can lead to several different IBS symptoms. There is some research looking into mental health/stress, severe GI infections, food allergies, and changes in gut microbes as potential causes or contributors to the development of IBS. More research is needed in this area.
 
How is IBS Diagnosed?
IBS is diagnosed based on the symptoms of the patient and the elimination of other disorders/causes. IBS cannot be confirmed by imaging or other diagnostic tools, as is the case with IBD, however these tools can be used to eliminate other disorders as the root cause of symptoms. Thus, blood tests, stool tests, x-ray, and/or endoscopy/colonoscopy may be ordered to rule out other disorders (e.g. colorectal cancer, IBD, endometriosis, lactose intolerance, celiac disease, etc.). Once these disorders are ruled out, IBS is diagnosed using the Rome IV criteria. This requires that the patient have recurrent abdominal pain on average at least 1 day per week during a 3 month period that is associated with two or more of the following:

• Related to defecation
• Change in stool frequency
• Change in stool form/appearance[v]

 
How is IBS Treated?
No single therapy is effective for all IBS patients. Treatment is different for everyone but may include psychological therapy/changes, dietary and lifestyle changes, and/or medication therapy.

• Psychological: Cognitive behavioral therapy and stress management techniques may help a patient to cope with any psychological factors that may be exacerbating IBS symptoms.
• Lifestyle changes: Regularly exercising may help to reduce bloating and constipation, as well as improve psychological factors that may be contributing to IBS symptoms. Many individuals with IBS find that following a special diet, such as a low FODMAP diet, can be very effective at reducing and managing symptoms. For those with constipation, an adequate fiber intake is necessary. Some individuals find that reducing dairy in their diet shows improvement in their IBS symptoms.
• Mediations: In severe cases of IBS, medications can help to reduce symptoms. Medication therapy is highly individualized for patients with IBS. There is no one medication that is most effective or works well for every single IBS patient.

 
IBD
 
Chances are that if you are reading this page, you are intimately familiar with what inflammatory bowel disease, or IBD, is. For this reason, we will only briefly discuss IBD in this post. For more detailed information on IBD, including the difference between Crohn’s disease and ulcerative colitis, please feel free to refer to my “What is IBD?” blog post. The link is at the bottom of this page. For the purposes of this post, the following information on IBD will be brief and will not dive into too much detail.
 
What is IBD?
Inflammatory bowel disease (IBD) is defined as a chronic inflammation of the GI tract.[vi] In an individual diagnosed with IBD, the body is triggered to produce an exaggerated, inappropriate immune response that results in GI tract inflammation. IBD is therefore considered to be an autoimmune disease. The resulting prolonged inflammation can cause tissue destruction and damage to the GI tract. IBD is characterized by periods of remission and periods of exacerbation.[vii]
 
What are the Symptoms of IBD?
Some of the common symptoms of IBD include:

• Persistent diarrhea
• Weight loss
• Fatigue
• Abdominal pain
• Bloody stools

 
Please note that this is not a comprehensive list of all IBD symptoms. Additionally, there are some differences in symptoms between the two types of IBD. For example, weight loss is more common in those diagnosed with Crohn’s disease, whereas bloody stools are more prevalent in those diagnosed with ulcerative colitis.[viii]
 
Unlike IBS, IBD patients can experience many different complications related to their disease.
 
Local complications can include:

• Hemorrhage
• Strictures
• Perforation
• Abscesses
• Fistulas
• C. difficile infection
• Toxic megacolon

 
Systemic complications can include:

• Skin, eye, and joint inflammation
• Mouth ulcers (in those with Crohn’s disease)
• Gallstones
• Kidney stones
• Liver disease
• Osteoporosis
• Blood clots
• Dehydration
• Malnutrition

 
What Causes IBD?
Unfortunately, the exact cause of IBD is unknown. However, we do know that the disease is a result of a weakened immune system.[ix] In a patient with IBD, the individual’s immune system develops an overactive, inappropriate immune response to the body’s own GI tract.[x] The most widely believed theory is that IBD is the result of an environmental trigger that causes an inappropriate, uncontrolled immune response in a genetically prone individual.[xi]
 
How is IBD Diagnosed?
In order to diagnose IBD, a full history of symptoms and a physical examination will need to be completed by the doctor. After all other conditions are ruled out, IBD is usually diagnosed based on certain tests, such as endoscopy, enteroscopy, sigmoidoscopy, and/or colonoscopy. Imaging studies (X-ray/CT/MRI) are sometimes necessary and can also be useful in diagnosing IBD.
 
How is IBD Treated?
There is no cure for IBD, but there are several different methods of IBD treatment, all with the goal of achieving and maintaining remission. These methods of treatment are:

• Medications
  • Anti-inflammatory drugs
    • Aminosalicylates
    • Corticosteroids
  • Immune system suppressors 
  • Biologics
  • Antibiotics
  • Anti-diarrheal medications
• Surgical therapy
• Nutritional therapy
• Rest
• Counseling and/or support group if desired

 
To summarize what was discussed on this page, please feel free to refer to the Venn Diagram included in this post. This diagram is not an exhaustive list of all the similarities and differences between IBS and IBD, but does highlight some of the key points discussed in this post. As mentioned above, if you have any questions or want to discuss this matter further, please contact your child’s doctor or other healthcare professional. It is my hope that this page provided you with a basic overview of the commonalities and vast differences between IBS and IBD. The next time that someone tries to compare IBD to IBS, remember that you have the opportunity to start shattering the misconception that these disorders are the same thing. You have the ability to kindly impart your knowledge in a gentle and loving way, without making light of anyone’s disorder or pain. As always, stay strong IBD Warrior parents!

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

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

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

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

​“What Is Inflammatory Bowel Disease (IBD)?” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, April 13, 2022. https://www.cdc.gov/ibd/what-is-ibd.htm.  

​You hear it all the time. The importance of a healthy diet. Aphorisms like “An apple a day keeps the doctor away,” “You are what you eat,” and “Food is fuel” circulate like wildfire within popular culture. You know that a healthy diet is important, and you know the basics of what constitutes a healthy diet. You’ve seen MyPlate images online depicting healthy portions of proteins, grains, dairy, fruits, and vegetables. You know that you should try to incorporate these food groups into each meal you serve your child. You know that in a general sense, it is better to serve more single ingredient/unprocessed foods than processed foods. If your child is diagnosed with IBD, however, you may be wondering if any of this translates to how you should be feeding and nourishing your child. Do the basic principles of a healthy diet still apply to your diagnosed child’s diet? How will preparing your child’s meals differ post diagnosis? Should it? Is there one right way to feed your child? What does feeding your child with IBD look like practically? By feeding your child a certain way, did you cause your child’s IBD diagnosis? This page will attempt to answer some of these questions, or at the very least, bring to light some information about the functional relationship between inflammatory bowel disease and diet.
 
Before we dive into the content, please note that this page is not intended to be a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Additionally, while I am a registered nurse, I am not a registered dietician. This page is intended to be used to communicate generalized information regarding the role of diet in the life of a diagnosed IBD patient. I do not know your child’s individualized diet needs. For more specific questions related to your child’s unique diet and treatment plan, please refer to your child’s doctor, as well as a registered dietician if/when appropriate. Now let’s begin!
 
Does Diet Cause IBD?
A common misconception is that diet is the direct cause of IBD development. Please understand that your child was not diagnosed with IBD because you fed him or her a certain food or meal. Unfortunately, the exact cause of IBD is unknown. We do know, however, that the disease is a result of immune system dysregulation. In a patient with IBD, the individual’s immune system develops an overactive, inappropriate immune response to the body’s own GI tract.[1] The most widely believed theory is that IBD develops after continued exposure to environmental triggers. These exposures spark the inappropriate, uncontrolled immune response in a genetically prone individual.[2] Some of the different environmental triggers that have been explored are infection, exposure to smoke, medication use, pollution, climate change, hygiene, and diet. While diet is not the direct cause of IBD, there are some studies that seem to suggest that diets containing a high amount of fiber, particularly from fruits, may lower the risk of developing Crohn’s disease, but not ulcerative colitis.[3] There is definitely a need for more research on the relationship between diet and IBD, but it is important to remember that although there may be a small association between diet and IBD, diet is not the cause of diagnosis. There are several factors that lead to the diagnosis of IBD.
 
Why is Diet So Important for an IBD Patient?
As mentioned earlier, a healthy diet is important for everyone, but it is particularly crucial for children with IBD. Research has shown that a well-balanced diet can contribute to achieving and maintaining remission, reducing IBD symptoms, and improving overall nutritional status. Additionally, diet can play a role in improving immune function and nutrient absorption to better support growth and development.
 
What Should My Child Eat After Diagnosis?
The best piece of advice I can give you is to work closely with your child’s doctor and/or an IBD-focused registered dietician to assist you in developing a personalized diet plan for your child. This plan would be individualized to your child’s specific nutritional needs, factoring in diagnosis (i.e. Crohn’s disease versus ulcerative colitis), status of disease (active or in remission), location and extent of disease, and any current symptoms your child is experiencing. Please note that there is not one single eating plan that works well for every individual diagnosed with IBD. There is not a magic formula or a magic diet for IBD. Every IBD patient has unique nutritional needs, and it is recommended that you work closely with your child’s healthcare professionals to ensure that your child is receiving individualized nutritional care.
 
That being said, here is a bulleted list of general tips for feeding your child with IBD. These tips are meant to give you a birds-eye view of the role of diet in regards to IBD. They are applicable to a general audience, but you should always follow the advice of your child’s doctor or registered dietician for a more specific nutritional plan pertaining to your child. This is especially true if you child is placed on a specialized diet (e.g. low FODMAP diet, Crohn’s disease exclusive diet, anti-inflammatory diet, etc.).
 

• Minimize trigger foods:
  • Trigger foods are simply foods that cause your child to experience discomfort. Trigger foods do not necessarily cause inflammation in your child’s GI tract, but they can cause some pretty unpleasant symptoms. Every IBD patient will have different trigger foods.
  • Common trigger foods include:
    • Foods high in insoluble fiber (bran, nuts, sunflower seeds, apple skins, etc.)
    • Foods high in fiber (cabbage, broccoli, beans, cauliflower, etc.)
    • Foods high in lactose (cow’s milk, ice cream, etc.)
    • Foods high in sugar (cookies, pastries, maple syrup, etc.)
    • Fried foods/high fat foods (butter, fried chicken, etc.)
    • Spicy foods
    • Caffeinated beverages
• Minimize foods that can increase inflammation:
  • Certain foods, such as red meats, have been linked to increasing overall inflammation when consumed frequently over a long period of time. Moderation is key!
• Increase foods linked to decreased inflammation:
  • Focus on increasing foods that are linked to decreasing inflammation, including fruits and vegetables, foods high in omega 3 fatty acids (fatty fish, chia seeds, flaxseed, etc.)
• When your child is in flare:
  • If your child is in flare, focus on increasing fluids and increasing protein (lean meats, beans, yogurt, chia seeds, etc.). If your child’s appetite has decreased while in flare, focus on nutrient-dense snacks offered frequently throughout the day, rather than big meals.
  • For example, you may be able to offer your child a smoothie packed with fruits, veggies, and chia seeds. Another snack option could be a banana with a spoonful of peanut butter. Over time, you will find what works best for you and your child.
• When your child is in remission:
  • When your child is in remission, focus on offering a wide variety of foods to ensure that your child is receiving a well-balanced diet. You should still be mindful of trigger foods, as well as foods that tend to cause inflammation over a longer period of time.

 
Practical Tips
You may be wondering how the above information translates into real-life scenarios. How can you apply what you just read in a practical way to meet the nutritional needs of your child? Here are some tips to help you deconstruct the above information and integrate it into your child’s day-to-day life.

• Keep a food log/diary. Keeping a tangible record of what your child eats throughout the day, as well as any symptoms your child is experiencing, is a very effective strategy to identity trigger foods and track the nutritional status of your child. In keeping a food journal, you may notice that your child actually consumes a fraction of the amount of recommended vegetables throughout the day. Or you may identity that honey, a very sugary food, is one of your child’s main trigger foods. A food log is an especially helpful tool to your child’s doctor or registered dietician. He or she can review the log and identity and discuss any nutritional gaps that may be missing from your child’s diet. A registered dietician can also use the information recorded in a food log to help curate your child’s unique diet plan.
• Prepare meals in advance. It may be helpful to prepare meals in advance. You may even consider freezing some meals. Planning/preparing meals in advance provides you with a greater chance of sticking to your child’s diet plan and recording foods/symptoms in your child’s food diary.
• Keep your kitchen well stocked. Try to keep your kitchen well stocked with snacks and ingredients for meals you know will not be triggering for your child/lead to inflammation.
• Plan for those nights. You know those nights. I’m talking about the nights when you are too tired to cook dinner or you run out of freezer/prepared meals. Have a few meal ideas in your head that you can fall back on in a pinch. Ideally, these meals are quick, easy, and adhere to your child’s diet restrictions. Keep the ingredients for these meals well stocked in your home for these types of nights.
• Plan for meals outside of the home. Look up menus to restaurants ahead of time if possible! If you are gathering at someone else’s home, you can always bring your own meal for your child, or discuss the meal ingredients with the host of the gathering if you are comfortable.

 
Other General Tips:

• Make sure your child is well hydrated. Offer plenty of fluids! Your child’s urine should be pale yellow and clear, not dark yellow/amber.
• Ask your child’s doctor about consulting with a registered dietician.
• Consult your child’s doctor for vitamin/supplement recommendations.
• Give yourself some grace. Preparing IBD-friendly meals is no easy feat. Remember, it is more important to focus on your child’s overall diet/eating patterns, rather than one specific snack, meal, or day.
• As your child ages, be mindful of their behaviors towards food and be on the lookout for disordered eating or restrictive eating. Please seek help from a professional if necessary.

 
Malnutrition
Both Crohn’s disease and ulcerative colitis impact your body’s ability to properly absorb nutrients from ingested food, which means there is a greater risk of malnourishment. Be mindful of signs and symptoms of malnutrition in your child. Should you observe any signs of malnutrition, you should contact your child’s doctor immediately to prevent long-term complications, such as delayed growth, stricture, and decreased bone density. You can discuss any potential nutritional gaps with your child’s doctor or a registered dietician. Some of the more noticeable signs of malnutrition include:

• Fatigue and/or low energy
• Decreased muscle mass
• Weight loss and/or lack of growth in a child
• Weakness

 
Final Thoughts
Maintaining a healthy diet is important for children with IBD, as it can help reduce IBD symptoms, improve nutrient absorption and immune function, achieve and maintain remission, and support overall health and development. I hope the information on this page was useful to you as you navigate your child’s IBD journey in relation to their diet. Please note that this page does not address nutritional support therapy (e.g. enteral or parenteral nutrition) or specific diet plans for IBD, such as an anti-inflammatory diet, an autoimmune protocol diet, or a low FODMAP diet. There are several different types of diet plans that can be implemented for IBD patients, and a registered dietician may suggest a specific one based on your child’s disease process, location, and symptoms. If you would like more help or have any questions pertaining to diet, you can feel free to reach out to me using my email address linked below. Please know that there are options for support available as well. Being a parent of a child with IBD can be challenging! IBD Connect offers a virtual caregiver support group that meets one time monthly. We also have an in-person family support group, a virtual family support group, and a virtual young adult support group as available options for support. If you would like more information about these groups, click the link at the bottom of this page. Stay strong IBD Warrior parents!


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

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

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

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

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

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

Perhaps your child has missed several days of school. Maybe your child has even missed weeks of school due to being unwell or hospitalized. Your child may complain about feeling ill or frequently needing to use the bathroom during the school day. Maybe he or she has even had an accident or other embarrassing situation occur while at school. Or perhaps none of this has happened yet, but your child is anxious that something will happen. The anxiety may be impeding academic success or hindering relationships with peers and teachers. Any of this sound familiar? School can be a challenging environment for a child diagnosed with IBD. A 504 plan may be able to alleviate some of the burden.
 
What is a 504 Plan?
The name “504 Plan” is derived from Section 504 of the Rehabilitation Act of 1973, a federal civil rights law. This law allows for students with disabilities impairing at least one major life activity to receive the same level of education and opportunities as students without disabilities. In the case of irritable bowel disease, going to the bathroom/toileting is the major life activity that is affected. A 504 Plan provides an avenue for certain accommodations or adjustments to be made to ensure that the student with IBD receives the same quality of education as other students. The goal is to remove any barriers to education so that the diagnosed child has equal access to learning and equal educational opportunities. Typically, a 504 Plan is created by the conjoined efforts of the parents/guardians, the student, and the school. It is important to note that this law is a federal law, which means that it applies to public schools. This law may also apply to some private/other schools but only if the school in question receives federal funding. In short, any school that is receiving any amount of federal funding is legally required to provide the necessary accommodations for a student with a documented disability.
 
What Types of Accommodations can my Child Receive?
The types of accommodations that your child receives will largely be dependent on how your child’s diagnosis manifests. Plans can be adjusted to accommodate your child’s needs. That being said, here are some accommodations that students with IBD may be able to have:
 

• Unlimited access to the bathroom
• Predetermined visual cue to inform the teacher they are leaving for the bathroom. This could be a hand signal, a laminated bathroom or nurse pass the student can leave on the desk, etc.
• A permanent bathroom pass
• Access to a nurse or staff bathroom
• Ability to carry or use cellphone
• Unlimited access to fluids/water to stay hydrated
• Unlimited access to snacks
• An individual healthcare plan developed with the school nurse
• Access to study guides or handwritten notes when child is absent from class
• Preferential seating (i.e. close to the door for ease in going to the bathroom)
• Tutoring services
• Quality versus quantity preference. For example, rather than having to practice fifty of the same type of problem, your child shows their ability to master this specific type of problem by completing three to five problems correctly. If they demonstrate competence, they can be excused from the rest.
• Testing at preferred times during the day
• Access to the school nurse, guidance counselor, school psychologist, etc.
• Possible accommodations to PE/gym class
• Options to make up missed assignments or class time due to medical appointments/unplanned absences
• Extra time to finish tests
• Separate testing room
• Ability to keep a set of textbooks at home
• Shorter school days
• Transportation accommodations
• Ability to have full participation in after school extracurricular activities, even on days the student may be absent
• Extra set of clothes at the nurses station
• Special accommodations for field trips and field trip planning

 
Please note that not every child with IBD will need every single one of these accommodations. Every IBD diagnosis is different, and every diagnosed child’s needs are unique. Accommodations listed in the 504 Plan are selected based upon several conversations that include the child, the parents/guardian, and the school. Additionally, the above list of accommodations are merely suggestions, and the list is not exhaustive by any means. It may be beneficial to seek the advice of your child’s GI specialist or healthcare team when discussing possible accommodations for a 504 Plan as well. They might have some insight on potential accommodations for your child and their unique medical situation.
 
How do I Start the Process of Establishing a 504 Plan for my Child?
There are several interventions that you can implement in order to initiate the process of establishing a 504 Plan for your child. Here are some suggestions:

• Contact your child’s doctor to obtain a letter or report documenting your child’s diagnosis.
• Contact your child’s school. In order to start the process of creating a 504 Plan, initially you may need to schedule a meeting with a guidance counselor, school administrator, and/or an appointed staff member for these types of services.
• Discuss your intention to create a 504 Plan with your child’s teachers. Be clear about your child’s health needs. Clear and effective communication between all parties involved in your child’s care and education (teachers, school nurse, guidance counselors, administrators, parents/guardians) is vital to creating a successful 504 Plan.  

 
Other Considerations When Creating a 504 Plan
When initiating the process of obtaining a 504 Plan for your child, there are several things that you should keep in mind.

• Please note that as part of the process for creating a 504 Plan, your child’s school must complete an evaluation of your child. This may include reviewing grades, attendance records, teacher’s reports, health records, etc. The documentation from your child’s doctor will be a piece of the evaluation process.
• Each school is required to have a 504 Coordinator. The 504 Coordinator ensures that the school district is in compliance with section 504 of the Rehabilitation Act of 1973. This is the individual you would approach if you did not agree with the school district’s evaluation decision or approved accommodations for your child.
• A 504 Plan is strongly suggested for all children with IBD, even if the child is currently in remission. IBD can be unpredictable at times. If your child has an unexpected flare during the school year, having a plan in place to accommodate your child’s needs can help alleviate some stress for both you and your child. Make sure your child’s school and teachers are aware of the unpredictability of the disease.
• In your child’s 504 Plan, it is strongly encouraged to include a section/plan for how their education will proceed if the child needs to unexpectedly stay out of school for an extended period of time. As previously mentioned, IBD can be unpredictable. Talk with your child’s school about the possibility of an in-home tutor or the ability to leave a copy of the textbooks your child is using at home. Make sure these details are documented in the child’s 504 Plan.
• Remember that a 504 Plan is different from an IEP. An Individualized Educational Plan, or IEP, is created for the child with an intellectual or leaning disability that requires special services. An IEP is more thorough and involved than a 504 Plan is and is possible through the Individuals with Disabilities Education Act (IDEA).
• Unlike an IEP, a 504 Plan is not legally required to be reviewed and updated each year. However, it is strongly suggested that the 504 Plan for a child with IBD is reviewed and updated by the 504 Team (parents, guidance counselor, administrator, 504 Coordinator, etc.) annually, as your child’s needs may change year to year.
• It is suggested to start the process of creating or updating a 504 Plan as early as possible, even as early as the end of the school year. That way the plan is set into place well before the start of the next school year, and your child will be able to receive accommodations right from the first day of school.
• Don’t assume that your child’s teachers know all of your child’s approved accommodations. As mentioned previously, communication is key to a successful 504 Plan, and ultimately, your child’s comfort.

 
Special Circumstances

• If your child is learning remotely, you may be able to have certain accommodations, such as:
  • Student having permission to turn off camera if they feel unwell
  • Being able to leave or log off to use the bathroom without fear of reprimand
  • Being able to use a private chart to alert the teacher of need to use the bathroom
  • Ability to have access to notes or recorded lectures if student missed part or all of a class
• Please note that 504 accommodations do not automatically apply to standardized college testing, such as the SATs and ACTs. If your child will be taking any standardized college testing during the upcoming school year, reach out to your child’s school. They should be able to walk you and your child through the process of applying for accommodations for these types of tests. This should be done well in advance to ensure that accommodations will be approved well before your child’s scheduled testing time.
• Many parents want to know if their child’s 504 Plan will follow them to college. If your child will be attending a public university or government-funded institution, you can have assurance that your child will be able to have accommodations. Section 504 of the Rehabilitation Act of 1973 also applies to higher education, with the same caveat that the school must be federally funded in some capacity. However, your child is an adult now. He or she will be responsible for going to their college’s disability office themselves to discuss their diagnosis and set up appropriate accommodations. Depending on the college, your child may be able to receive accommodations, such as such as priority enrollment to classes (selecting classes ahead of peers), note-taking assistance, extended time for test taking, ability to take tests in a separate room, adjusted deadlines/attendance requirements, housing and/or dining accommodations, and more. Your child may benefit from bringing a copy of the current 504 Plan to their meeting with the disability office. For more information about navigating college with IBD, feel free to check out the blog post on this topic! It will be linked at the bottom of this page.

 
Talking With Your Child About Their 504 Plan
Creating a 504 Plan and making sure your child is accommodated for in an educational setting can be stressful. Please do not forget that your child is a huge part of the process. After all, the phone calls you will need to make and meetings that you will need to attend are ultimately for their benefit. Do not be afraid to involve your child in the process! One day they will need to be able to advocate for themselves, and you want to be able to teach them the skillset they need to be the best advocate they can be. In order to involve your child in the process, you will need to do so in an age-appropriate manner. You know your child best and will be able to discern the level of involvement that your child will be comfortable with. Ask your child what types of accommodations they would like to receive. Ask your child if certain interventions would be helpful to their learning and comfort. Ask your child how they feel about certain accommodations and let them know that it is okay to be open and honest with you. Your child may have fears related to “being different” or “standing out.” Let your child know that these are normal feelings and help your child to work through those feelings in a healthy, constructive manner. Seek outside help from a professional if you feel it is necessary. Make sure you review the plan with your child before you sign it to ensure they are aware of what accommodations are available to them. Involve your child and take into account their feelings in every step of the process!
 
I hope the information on this page was useful to you as you navigate your child’s IBD journey in relation to their formal education. If you would like more help or have any questions, you can feel free to reach out to me using my email address linked below. Please know that there are options for support available as well. Being a parent of a child with IBD can be challenging. Understand that a having a 504 Plan in place for your child does not mean you are seeking special privileges for your child. Instead, you are seeking to provide your child with the same quality of education as other children. IBD Connect offers a virtual caregiver support group that meets one time monthly. There are several families who attend that have 504 Plans implemented for their child. We also have an in-person family support group, a virtual family support group, and a virtual young adult support group as available options for support. If you would like more information about these groups, click the link at the bottom of this page. As always, I would like to remind everyone not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Stay strong IBD Warrior parents!

​For More Information and Further Reading:

• https://www2.ed.gov/about/offices/list/ocr/504faq.html
• https://www.hhs.gov/sites/default/files/ocr/civilrights/resources/factsheets/504.pdf
• https://www.eeoc.gov/rehabilitation-act-1973-original-text