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.
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!
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:
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:
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.
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:
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:
Systemic complications can include:
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:
To summarize what was discussed on this page, please feel free to refer to the Venn Diagram included in this post. This diagram is not an exhaustive list of all the similarities and differences between IBS and IBD, but does highlight some of the key points discussed in this post. As mentioned above, if you have any questions or want to discuss this matter further, please contact your child’s doctor or other healthcare professional. It is my hope that this page provided you with a basic overview of the commonalities and vast differences between IBS and IBD. The next time that someone tries to compare IBD to IBS, remember that you have the opportunity to start shattering the misconception that these disorders are the same thing. You have the ability to kindly impart your knowledge in a gentle and loving way, without making light of anyone’s disorder or pain. As always, stay strong IBD Warrior parents!
[i] Lewis, Sharon et al., Medical-Surgical Nursing: Assessment and Management of Clinical Problems (St. Louis, Missouri: Elsevier, 2017), 940
[ii] Chey WD, Kurlander J, Eswaran S. Irritable bowel syndrome: a clinical review. Journal of the
American Medical Association. 2015;313(9):949–958.
[iii] Definition and Facts for Irritable Bowel Syndrome
[iv] Definition and Facts for Irritable Bowel Syndrome
[v] Lewis, 940
[vi] Lewis, 944.
[vii] Lewis et al., 944.
[viii] Lewis, 946.
[ix] Centers for Disease Control and Prevention, What is Inflammatory Bowel Disease?
[x] Lewis, 944.
[xi] Alatab et al.
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. 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. 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. 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.).
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.
Other General Tips:
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:
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!
 Lewis, Sharon et al., Medical-Surgical Nursing: Assessment and Management of Clinical Problems (St. Louis, Missouri: Elsevier, 2017), 944.
 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
 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:
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:
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.
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:
The month of June is often an exciting time. Many families are looking forward to making memories with fun summer activities. Trips to the beach, time in the pool, Fourth of July fireworks, family vacations, and campfires are on the horizon. June is the transition month that marks the end of the school year and the official start of the summer season. For some of you, the end of the school year means that your child graduated high school. What an amazing accomplishment! Your child successfully completed the academic requirements for a high school diploma while navigating the extra challenges that come with a chronic illness. You are proud of your child, but nervous about what the future holds. If your child has chosen to enroll in college post-graduation, you may be nervous for the big transition in the fall. Will your child be able to manage his or her medications independently? What will your child’s diet look like? Will the stress of the transition cause a flare? Will your child receive academic support? How will your child’s medical care transition smoothly? This page is intended to help guide you and your child through the college transition. Your child is now an adult, growing in independence. While I typically write to parents of children diagnosed with IBD, from this point on, I will be writing directly to the impending college student with an IBD diagnosis. Parents, you are still more than welcome to read over the information presented on this page as you help navigate your child through this next step in their life. In fact, it may be beneficial for both the future college student and the parent to read this information together to ensure that the transition to college is as smooth as possible for both parties. To the parent, it is my hope that you feel comfortable and confident with your child’s ability to navigate their diagnosis independently away from home. To the future college student, it is my hope that with the right strategies and support, you will be able to thrive academically, socially, and personally while you are at school. However, while you are busy preparing for college, please don’t forget to enjoy all those fun summer activities too!
Tip #1: Create a list, folder, or binder with your current pertinent medical information.
Creating a list, folder, or binder with all your medical information in one place will help you stay organized as you navigate your independence in relation to your diagnosis. You can consult your list if you need to make a call to your insurance company, if you are planning to see a new gastroenterologist, or if you unexpectedly get admitted to the hospital.
You can add anything that you deem as relevant to your IBD journey to your list, folder, or binder, but some items to consider including are:
Tip #2: Determine your plan for health insurance coverage.
As you are probably aware, most health insurance plans allow dependents to stay on their parent’s policy until age twenty-six. Of course, you should always check with your parents to review any limitations of their health insurance plan, as well as for approval to stay on their policy. If you find yourself in need of health insurance, there are other options available. Most colleges and universities offer a student health plan that you can enroll in at the start of each semester. You should call and do research before enrolling to ensure that your specific healthcare needs will be covered under the plan.
Tip #3: Familiarize yourself with medical and health insurance terminology.
For some, going to college means the transition from pediatric care to adult care. This transition typically happens between the ages of eighteen and twenty-one. This can be overwhelming at first. Your pediatric team is familiar and comfortable, and the world of adult care is new and daunting. Whether you make this transition within your current practice/healthcare system or you are switching to a completely new healthcare system, it is best to start practicing your independence in making your medical decisions. Familiarize yourself with scheduling appointments independently and answering your provider’s questions directly, rather than looking to a parent or guardian for help. Research and understand your diagnosis and the medical terminology associated with it. Know your medications and medication schedule. Another huge piece to becoming more independent in your medical care is understanding health insurance. What is a deductible? What are co-pays? What is the importance of going to an in-network provider? Once you understand the basic terminology, apply your newfound understanding to your specific health insurance plan. Will you need referrals for out of state providers if you are attending college out of state? Have you met your deductible? Knowledge is power. The more knowledge you have about your diagnosis, medications, and health insurance, the more comfortable you will feel managing your medical care independently. The more independent you are, the easier the college transition will be.
Tip #4: Inform your current provider of your intent to attend college.
You should inform your current provider of your plans to attend college months in advance for the smoothest transition possible. He or she can help you adjust your medications or treatment plan as needed, as well as provide the necessary prescription refills or medical documentation you may need for disability services during the transition period. If you plan on attending college far away from home and will not be returning to your current provider for care, your current office may be able to help you find a new provider to take over your IBD care. He or she may also be able to fax over any medical records from your current practice to your new practice. If you plan to do this, you should contact the new office to schedule an appointment as soon as possible. This way, you have a better chance of securing an appointment soon after your arrival to college. If you plan on attending a college that is far enough from home where driving to appointments is not feasible, your provider may be able to help you locate another gastroenterologist close to campus to collaborate on your IBD care. You should always double check with your provider and your insurance company to make sure that this is feasible.
Tip #5: Ensure that you update your preferred pharmacy if necessary and locate the nearest in-network hospital.
This tip is pretty self-explanatory! Make sure that you update your preferred pharmacy with your current or new provider’s office if necessary. Also, if you take medications that need to be refrigerated, ensure that you have access to a refrigerator while on campus. Locate the nearest hospital to your campus that will accept your insurance in case an ED trip or hospitalization becomes necessary. You can add the new pharmacy and hospital information to your list, folder, or binder.
Tip #6: Speak with your college’s disability office or center.
Many colleges have a disability office or center. If you will be attending a public university or a government-funded institution, you can have assurance that your school will be able to provide you with learning adaptations to accommodate your diagnosis under Section 504 of the Rehabilitation Act of 1973. Depending on your college or university, you may be able to receive accommodations, such as priority enrollment to classes (selecting classes ahead of peers), note-taking assistance, extended time for test taking, ability to take tests in a separate room, adjusted deadlines/attendance requirements, housing and/or dining accommodations, and more. Some students are able to request rooms with a kitchen to prepare meals from home rather than having a meal plan. You also may be able to request a single room or a room with a bathroom. It is best to set up a meeting with your college’s disability center as soon as possible. Bring copies of your current 504 if you had one in high school! Most private universities also have a disabilities office that will work with your specific needs to help you achieve academic success. It is always best to call first to ensure that receiving accommodations is feasible.
Tip #7: If you are comfortable, talk with your professors and roommates about IBD.
Whether or not to have a conversation with other individuals about your diagnosis is dependent upon your personal comfort level. Many college students with IBD find that being open and honest about their diagnosis and the accommodations and/or restrictions they have is more freeing, leading to less stress overall. If you choose to talk with a professor, it may be better to talk with them one-on-one during their office hours. Be sure to have a letter or note from your school’s disability office on hand so that your professor has written proof of your need for accommodations. Having a conversation with your professor may help him or her to better understand your diagnosis, as well as remember your face in connection to the type of accommodations you need. If you have a roommate or several roommates, choosing to talk with them about your diagnosis is also a very personal decision. If you choose to discuss your diagnosis with them, it may be helpful to explain what IBD is and communicate to them your need to urgently use the bathroom or the importance of prioritizing rest. If you are living in a suite with other roommates and have a kitchen, you may want to mention any dietary restrictions you have. This may help to prevent awkwardness in the future.
Tip #8: Plan ahead to ensure you are receiving adequate nutrition.
If you will be purchasing a meal plan, you may want to talk to dining hall staff or a manager about ingredients used in food preparation or any special concerns or considerations you have when it comes to food. There are typically several different meal options presented in the dining hall at any given time. Be smart with your food choices and pick items that meet your specific nutritional needs. It may also be helpful to keep healthy snacks in your dorm room that you know will not provide you any discomfort. If you are living in a dorm with a kitchen or in an apartment, you will be able to prepare all of your meals. Meal prepping and/or making meals to keep in the freezer can be a huge time saver, especially as you navigate the busyness of your course work and social life while at school. When it comes to your nutrition, the best thing you can do is to be proactive. Planning healthy meals in advance before you become overwhelmed with academics is your best option!
Tip #9: Know your terrain.
This may sound silly, but when you receive your class schedule, walk through your campus to locate the nearest bathroom to each of your classes before your classes even begin! That way if there is ever a situation in which you urgently need to use the bathroom, you at least have some idea of where the closest one is. There are also apps that you can download to your phone to help you locate the nearest bathroom. It also may be helpful to identity other resources on campus, such as the disability center, student counseling services, the student health center, etc.
Tip #10: Prioritize your health and enjoy your time at college!
The last tip is to prioritize your health! Going to college is an incredibly exciting time for many young adults, but it can also be a challenging transition. You will be away from home in an unfamiliar environment and will be completely responsible for your medical care for the first time. This increased stress has the potential to cause a flare, therefore, it is important to prioritize your health by finding or creating a support system you can lean on if you find yourself getting overwhelmed. Your support system can include your parents or family members, friends from high school, new friends from college, or a counselor. Many colleges and universities offer a certain number of free counseling or therapy sessions for students each semester. Take advantage of those opportunities. Reach out to people and build your support network before you become overwhelmed. That way, if you do ever feel overwhelmed, you have people you can lean on for support. Ensure that you rest, eat well, and stay hydrated. And enjoy the experiences and opportunities that college has to offer. You got this!
If you are a high school graduate with plans to attend college in the fall, I hope the information on this page was helpful for you as you prepare for your big transition. Please use this summer to organize your medical information and create a plan for doctor’s visits, prescription coverage, health insurance approval, etc. Remember, if you are going to run into a problem, it’s best to run into the problem in June rather than August so there is time to correct it before starting school! If you have any questions or need support, IBD Connect is here for you. We offer a virtual young adult support group for ages 18-30 that meets one time monthly. For more information about how to get connected with this support group, click the link at the bottom of this page. You can also feel free to email me. My email address is linked below! If you are a parent reading this page, I hope that this information was useful to you as you assist your child through this major life transition. If you would like more support, we offer a virtual caregiver support group that meets one time monthly. If you would like more information about this group, click the link at the bottom of this page. As always, I would like to remind everyone not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Stay strong IBD Warriors/IBD Warrior parents!
Welcome back to Emily’s Gut Check! Today we will be continuing our discussion on ostomies! If you missed the previous post, I encourage you to check it out using the link at the bottom of this page. In it, we define what an ostomy is, briefly discuss ostomy care and management, and finish with addressing some ostomy-related myths and questions. This information will hopefully aid you in your understanding of the material presented below. I’m so excited to share that today’s post is actually an interview with two of our own IBD Connect team members- Meghan and Laura. As the social media director, Meghan helps the IBD Connect team by managing our social media platforms. She does an amazing job curating and posting written material, graphics, and images that seek to promote IBD education and inform IBD Connect members of upcoming events. Laura, on the other hand, facilitates a monthly virtual young adult support group through IBD Connect. There is such a need for IBD support for this age group, and Laura does a wonderful job making these young adults feel welcomed, listened to, and understood. Meghan and Laura have more than their connection to IBD Connect in common, however. Both of them were diagnosed with IBD and have ostomies! In today’s interview, we discuss how their ostomies have impacted their physical, mental, emotional, and social lives. We cover topics like ostomy surgery, evolving relationships with friends and family, and some of the unforeseen challenges of ostomy life. It is my hope that this discussion not only broadens the readers’ overall understanding of ostomies, but allows the reader to apply the clinical knowledge reviewed in the last post to practical, real-life situations. As they reflect back on their IBD journeys, Meghan and Laura provide thoughtful and insightful answers to these common ostomy-related questions. I have faith that readers will find support and encouragement from their beautifully articulated thoughts and feelings. Please enjoy the interview!
Can you please introduce yourselves? Tell us a little bit about yourself and your connection to IBD Connect!
Meghan: My name is Meghan Brown, and I am 31 years old living in Central Virginia with my husband, our two children, and lots of pets! I love spending time with my family, playing in the garden, escaping to the beach, and relaxing with a cup of coffee. I was so fortunate to be introduced to IBD Connect through a mutual friend and quickly stepped in to help with social media. It has been so much fun being able to use my creative side to support a cause that is so near to my heart – pediatric IBD.
Laura: Hi everyone! My name is Laura Castrigano, and I’m a teacher and mom living in northern Vermont. I recently joined the IBD Connect team as a facilitator for our virtual Young Adult support group. We’re working on building a community where young people living with IBD feel welcome and understood - please feel free to join our monthly meetings to see if it’s a good fit for you!
If you feel comfortable sharing, can you please summarize your IBD journey? How old were you when you were diagnosed? How did your diagnosis impact your daily life?
Meghan: I was diagnosed with Crohn’s Disease when I was 13 years old. I began having the typical symptoms of diarrhea, pain, and bloody stool. My parents took me to the doctor, but my symptoms were immediately dismissed, and I was labeled as a nervous child. Thankfully my parents were not going to accept that diagnosis, and a few months later I was formally diagnosed with IBD. My Crohn’s was so severe that I had to be homeschooled my freshman year of high school because I literally could not get out of bed. My body was incredibly weak, and I was constantly in and out of the hospital. I began taking biologics and thankfully fell into remission, allowing me to return to high school the following year.
Laura: I was diagnosed with Ulcerative Colitis when I was 25 years old. My disease progressed rapidly, and within six months I had already been through multiple medications and hospitalizations without any improvements. While I continued to work full time through the fall semester, the situation became untenable and I took a leave of absence after the holiday break. It was so frustrating to feel like nothing I was doing was helping my symptoms. I was exhausted physically and emotionally, and spent my days resting, getting infusions, visiting doctors, and waiting on hold with my insurance company.
"I was exhausted physically and emotionally, and spent my days resting, getting infusions, visiting doctors, and waiting on hold with my insurance company" -Laura
What ultimately led to the decision to get an ostomy? Was it a life-threatening situation? Was medication therapy failing or losing effectiveness for symptom management? How old were you when the procedure was performed?
Meghan: After being in remission for five years, I started getting sick again while I was in college. I had formed immunity to the biologic that had previously helped me get into remission, and now had to go through my options. Unfortunately, I was failing all the available medications. When I was 24 years old, I went in for a routine colonoscopy and was feeling the best that I had felt in a while. It turns out, that wasn’t the case at all, as my doctor discovered high grade dysplasia deep within the tissue of my colon. I was deemed precancerous and given the options to do nothing, have my colon partially removed and continue with routine colonoscopies to monitor potential cancer risks, or have surgery to remove my colon and rectum, and live with an ostomy bag for the rest of my life. Of course, I wanted nothing to do with an ostomy, and to be honest I didn’t really know what one was. However, an intimate conversation with my surgeon ultimately helped me to realize that an ostomy was the best decision for me, and I am so glad I went through with surgery.
Laura: One day in February (shortly after my 26th birthday), I suddenly began feeling extremely unwell. I was in severe pain, and when I called my doctor, he told me to go to the emergency room. Twelve hours later, I had emergency surgery to remove my colon. It was shocking to me, as up until that point I was unaware of ostomy surgery as a treatment.
Could you walk us through the process of getting an ostomy? What was it like before, during, and after the procedure?
Meghan: I had a month’s notice before having surgery for my ostomy. Before my procedure I tried to research and learn as much as I could, which was difficult as people didn’t really talk about it too much on social media. I found a few blogs and YouTube videos, but that was about it. I also met with my stoma nurse the day before surgery so that she could mark my stoma site. We discussed where my stoma would be placed and considered different factors, such as where my pants sit on my waist. She used a black sharpie and drew four spots on my stomach, marking the preferred spot with an #1, but also giving the surgeon options if something went array.
My procedure lasted 8 hours as I had my entire colon removed, my rectum removed, and an ostomy bag placed.
After the procedure I stayed in the hospital for five days while my bowels “woke up.” It’s important to be able to pass gas and output before going home. While in the hospital I also had to work to regain strength and ate a very basic diet. Grilled cheese sandwiches and tomato soup were my go-to, and I was instructed to very thoroughly chew! My stoma nurse also visited and taught me how to change and empty my bag. Before I could leave the hospital, my care team wanted to ensure that I knew how to care for my stoma on my own.
Laura: I might not be the best person to ask, as I was pretty incoherent both leading up to and following my procedure… I basically got a crash course in ostomy anatomy and placement from a WOC nurse right before surgery. She talked me through where it would go and what it would look like. She examined my abdomen and drew Xs in a few areas to show the surgeons where she recommended the stoma be placed. After the surgery, she visited me regularly to assist me in changing the appliance. Due to the severity of my disease, I was in the hospital for ten days before being discharged, so I had ample opportunity to ask questions and watch skilled nurses change my appliance for me.
Emotionally, how did you feel post procedure? Again, from an emotional standpoint, what was it like navigating the process of learning how to care for your ostomy?
Meghan: I was in a very positive mindset after my procedure. However, before my procedure, I felt like my life was over. I was adamantly against having an ostomy bag and truly felt that it would ruin my quality of life. I was miserable and felt lost in this deep tunnel of negativity and felt horrible about myself. After having that life-altering conversation with my surgeon, I made up my mind that I was tired of feeling so terrible and decided that an ostomy was going to be my second chance. By this point I had been sick with Crohn’s for 10 years and missed out on so much of my life. If I had to have an ostomy, I was going to make the best of it. This mindset helped me navigate how to care for my stoma. I think the most difficult thing was finding appliances that worked best for me, but that is a learning curve that most people will encounter.
Laura: Because my surgery was unplanned, it was really hard for me to initially accept that my ostomy would be a part of my life. While I was certainly grateful for the life-saving procedure, it was hard to come to terms with my new normal and how I would navigate my formerly active lifestyle with an ostomy. At first I was tentative to change my appliance at home, and became anxious any time things went wrong - like when I had a skin issue or a prolapse. With time, I became more comfortable both changing the appliance as well as accepting that thinking about it would be a part of my daily mental load.
How has your life changed since getting an ostomy? Has it improved your quality of life in any way?
Meghan: My life has completely changed for the best since having surgery. Of course, I still have Crohn’s Disease, but I’m finally able to live. I had been sick for so long, I thought feeling that way was normal. I’m no longer in pain, I don’t feel anxious trying to find the nearest bathroom or wondering if I’ll make it to the toilet in time, I’m able to eat foods that I once couldn’t, and I can be present in the moment.
Laura: While my recovery wasn’t straightforward (I actually had 3 additional surgeries to create a J-Pouch, which ultimately failed within 4 months of take down), I now live a life similar in many ways to my life before my UC diagnosis. In the last few years, I have been able to return to work full time, travel, run a half marathon, and continue to push myself physically and mentally. Most importantly, my ostomy has allowed me the stability and health to have a successful pregnancy, and I am now a mother to the most amazing toddler.
"My life has completely changed for the best since having surgery. Of course, I still have Crohn's Disease, but I'm finally able to live." -Meghan
What were some of the biggest challenges you faced when adjusting to life with an ostomy, and how did you overcome them?
Meghan: I think the biggest challenge was accepting that this would be my new normal, forever. I will never be able to see my stomach without a bag or stoma, and I’ll never use the bathroom “normal” again since my ostomy is permanent. What helped me most was connecting with other ostomates on social media. There is a huge community of ostomates out there, extremely supportive, helpful, and open armed. It’s really amazing to be able to connect with people you’ve never met in person and bond over something so personal. I’ve quickly become best friends with a lot of the people I’ve met online, and we talk almost daily. Having that support system, knowing that they are experiencing the same things (physically and mentally) that I go through, and vulnerably putting ourselves out there together is what has helped me to accept my ostomy. Positivity has also been a coping strategy through just being thankful to be alive. Celebrating the small wins and learning to not stress over the little things – my perspective on life totally changed after going through surgery.
Laura: It’s really hard to explain to people that while I’m no longer “sick,” I’m also not unaffected by my disease. I struggle with dizziness, dehydration, and fatigue, as well as with intestinal blockages if I’m not careful about the foods I eat. I also have chronic pain associated with my scar tissue and failed JPouch, which tends to flare up when I am stressed or sick. While these things are minor in comparison to the symptoms I used to experience with UC, they do impact my day to day life and mean I need to be thoughtful about getting adequate rest and communicating what I need to my loved ones.
How has having an ostomy impacted your relationships with friends, family, and significant others?
Meghan: My ostomy has given me my two biggest blessings – my children! I chose an ostomy because I didn’t want the threat of cancer to impact my ability to be a mother. I could never fathom being a young mom dealing with something like that. The only way to ensure this wouldn’t happen was to have ostomy surgery. I had my daughter three years after having surgery, and now we also have a little boy. I was able to experience pregnancy with my ostomy (twice!) and thankfully had two healthy births. I would love to have more children, and I can’t help but smile when I think about how my ostomy has given me that possibility, as well as the ability to be here to watch them grow.
Laura: At last month’s Young Adult meeting, I was reflecting on how interesting it is to meet new people who don’t already know about my medical history and ostomy. My family moved two years ago, and I have met many new friends and colleagues since. Now I have the choice of how and when to share my story with new people, and I’m finding myself not sharing it more often than not. I think this demonstrates that while my ostomy is still something I think about each day, it’s no longer a defining characteristic for me the way it was for the first year or two I had it.
As for how my ostomy has impacted the relationships I already had with family and friends - my family and friends are wonderful, but it’s hard for them to understand what I’ve been through. I’m hopeful that my work with IBD Connect will help me develop new friendships and understanding with those with similar experiences.
Was there anything that has surprised you about getting an ostomy?
Meghan: I think the most surprising thing is the ostomy community! There are a lot more people out there that have an ostomy than you know. It’s not something as uncommon as you would think, and it’s not limited to one demographic. People of all ages have ostomies, and they are all so supportive of one another.
Laura: It took me a while to figure out how to sleep comfortably with it. And while it rarely happens, it can make some pretty interesting noises at inopportune moments!
Finally, do you have any words of advice for a parent of a child who may need an ostomy? What encouraging message could you share?
Meghan: My biggest piece of advice is to not get too sucked in – meaning that there is a lot of information out there, both positive and negative. It can be easy to fall into a negative spiral, but just remember that everyone’s experience is unique. You and your child get to decide how to perceive an ostomy and you get to choose your own mindset. Don’t let anyone or anything influence how you feel, because at the end of the day the most important thing is that your child is alive, happy, and healthy.
Ostomy life can be a beautiful life. It can be a second chance to live the life you never knew you were missing, and it can bring on so many new opportunities. It’s up to you to decide how you want to live.
Laura: Oof, this is a hard one.. As a mom, I always want what’s best for my child. It’s so scary and overwhelming to have a sick child and to feel like you might make the wrong decision when you are trying to help them feel well again. The advice I would give would be to trust your gut, and to trust that if an ostomy is medically what’s best for your child, that you as their parent will be able to provide the love and support they need to physically and emotionally recover from the changes that having an ostomy will bring for both your child and your family.
The advice I would give would be to trust your gut, and to trust that if an ostomy is medically what's best for your child, that you as their parent will be able to provide the love and support they need to physically and emotionally recover from the changes that having an ostomy will bring for both your child and your family." -Laura
This concludes our interview. Clearly, Meghan and Laura unpacked a wealth of knowledge related to the physical, mental, emotional, and social changes that come with an ostomy. If you are looking for more information or would like to receive support, please feel free to contact me. My email is linked at the bottom of this page. I can direct you to an individual on the IBD Connect team that can help. Even though today’s post was not clinically heavy, I still want to remind everyone not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Before we wrap up this post, I want to give a huge shout out to Meghan and Laura. Their eagerness to participate in this interview speaks volumes about the hearts they have for supporting this cause. Thank you so much Meghan and Laura for an awesome interview! And as always, stay strong IBD Warriors/IBD Warrior parents!
"Ostomy life can be a beautiful life. It can be a second chance to live the life you never knew you were missing, and it can bring on so many new opportunities. It's up to you to decide how you want to live." -Meghan
Welcome back to Emily’s Gut Check! Today we will be discussing ostomies. There are roughly 725,000 to 1 million people living with an ostomy or continent diversion in the United States. Approximately 100,000 ostomy surgeries are performed each year in the United States. Despite the sheer number of people that have ostomies, there still seems to be a lot of confusion encompassing them, even amongst the IBD community. What is an ostomy? Why would someone have to undergo ostomy surgery? How do you care for an ostomy? Are they permanent? Can you tell if someone has one? These are just a few of the questions I hope to answer in this post. Together, we will unpack what an ostomy is, briefly discuss care and management, and finish with addressing some ostomy-related myths and questions. This post is a little more medically heavy than my last post, so as always, I want to remind everyone not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Now let’s dive into the discussion!
What is an Ostomy?
An ostomy is a surgical procedure in which a portion of the digestive or urinary system is rerouted through an opening in the abdomen called a stoma. The stoma allows for waste to pass out of the body.  The waste is then collected in an external ostomy pouch or appliance. There are three common types of ostomies. These are:
There are several reasons why an individual may need ostomy surgery. Some of these include:
Ostomies in Relation to IBD
In the case of IBD, ostomies are often used when medical treatments fail to control symptoms, or when there is a risk of life-threatening complications, such as bowel obstruction or perforation. The common types of ostomies needed for IBD patients are colostomies and ileostomies. These types of ostomies can be either temporary or permanent, depending on the severity of the disease. Sometimes, a temporary ostomy is sufficient to allow parts of the bowel to rest and heal. Temporary ostomies can provide relief and improve quality of life by:
Living with an Ostomy
Because there are several different types of ostomies and appliances, I will not be going into very specific details about how to care for an ostomy. Instead, I will give general guidelines that most providers would agree upon in relation to ostomy care. You should always follow the patient-specific guidelines given to you from your child’s doctor or wound care/ostomy nurse.
In general, you should give your child’s provider a call if your child’s stoma:
You should also give your child’s provider a call if:
There are some potential complications associated with having an ostomy for IBD, including: stoma problems, pouch problems, dehydration, nutritional deficiencies, psychological distress, and in rare cases, bowel obstruction. In general, it is always best to have open, honest communication with your child’s provider about any questions or concerns you or your child may have in relation to your child’s ostomy.
Living with an ostomy can be challenging, but there are many resources available for support and information, including United Ostomy Association of America (https://www.ostomy.org/) and Hollister Ostomy Care (https://www.hollister.com/en). IBD Connect is also here to support you! Please feel free to reach out to myself or someone else on the IBD Connect team.
Myths and Questions:
Myth: An individual with an ostomy must feel sick all the time.
I will respond to this myth in regards to ostomies in IBD patients in specific. A large majority of people with IBD who have had ostomy surgery actually state that having the ostomy surgery has given them their life back. As mentioned earlier, ostomy surgery can help to alleviate a lot of the symptoms of IBD because the diseased/inflamed portion of the bowel is no longer working so hard. This means that symptoms like abdominal pain, urgency, and diarrhea are typically reduced or resolved.
Question: Can you exercise with an ostomy?
Yes! In general, if there were no complications with the ostomy surgery, your child can begin exercising again pending your doctor or provider’s approval. Your child may need to have some accommodations, however. For example, if your child is interested in playing a contact sport, your child may need to wear a protective stoma cover. The risk of hernia is also greater so it is best to discuss activities like weight lifting with your provider.
Myth: Ostomies are permanent.
This myth has already been addressed in this post. To recap, every IBD case is unique. If ostomy surgery is advised, the type of surgery recommended is based on your child’s clinical presentation and the doctor’s best judgement. If your child’s doctor recommends surgery to help treat IBD, sometimes, a temporary ostomy is sufficient to allow the bowel to rest. The ostomy may be able to be reversed, usually at least 3 months after the procedure. In other cases, a doctor may recommend a permanent ostomy with no plans for ostomy reversal. Each IBD case should be approached individually.
Question: Will the ostomy smell?
Typically, an ostomy appliance is air-tight. This means that you shouldn’t notice any odor if the pouch is closed. Many ostomies appliances are built with air filters that neutralize potential odors as well. If you do notice an odor, there may be a leak. You may notice an odor when you change or empty the pouch because the system will be open. To prevent odor, you should ensure that the pouch system fits nicely and empty it regularly. If the pouch gets too full, the weight can cause a leak, which means that odor may escape. Sometimes certain foods can cause more odor. There are products that help combat odor if it does become a true concern or issue. These products are designed specifically for ostomies. You should never attempt to use an odor neutralizing product that isn’t made specifically for ostomies.
Question: Can I shower or bathe with an ostomy? What about going in a pool, lake, or ocean?
Yes and yes! For showering and bathing, you should make sure you talk with your child’s medical provider or wound care/ostomy nurse. Some patients prefer to shower or bathe with the appliance completely off. Some patients find that this increases stoma irritation. However, it is okay for the stoma to get wet. In general, if your child is showering or bathing without the pouch system, make sure the flange/skin barrier is removed as well. If your child is showering or bathing with their pouch system, ensure that the seal is secure and wear both the skin barrier/flange and the pouch system. Patients can also swim while wearing their pouch system! The system is designed to be water resistant. Just be sure to check the seal prior to swimming.
Myth: You can’t wear normal clothes with an ostomy.
Typically, you can wear the same clothing after an ostomy surgery as you wore before ostomy surgery. There are some products that help to keep the pouch in place if that is something your child desires. Furthermore, ostomies usually aren’t visible underneath clothing!
Question: Does your diet have to change with an ostomy?
Truthfully, your child’s diet should change. Once again, every IBD patient is different so it is important to have a discussion with your child’s medical team in regards to diet. These discussions should include a registered dietician who has experience with ostomy surgeries. In general, immediately following surgery and for a few weeks, it is best to eat foods that are easier to digest and foods that produce less gas. Some other helpful tips include:
Myth: You cannot get pregnant if you have an ostomy.
False! Many ostomates successfully become pregnant and deliver healthy children. When this time comes for your child, it will be important for her to communicate with her medical team about her intent to become pregnant. Generally speaking, however, ostomy patients typically do well in pregnancy if there are no other health concerns. There can be some skin changes with the stoma and other minor changes that occur during pregnancy.
I hope the information on this page was useful in providing a general overview about ostomies. I am excited to share that the discussion about ostomies today was actually planned in preparation for my next post, which happens to be a very special interview with two ostomates! We will look into how having ostomy surgery has impacted their lives, physically, mentally, and emotionally. I am looking forward to sharing this interview with you all next time on Emily’s Gut Check. I have a few reminders to wrap up this post. Once again, it is always best to listen to your child’s medical provider in regards to your child’s individual treatment plan. Please do not use this page as a substitute for a professional medical opinion. I also just wanted to remind everyone that that there are options for IBD support. The links for the IBD Connect main page and support group pages are listed below. If you have any questions for me or if you want to venture a topic for a future blog post, feel free to email me at my email address listed below. As always, stay strong IBD Warriors/IBD Warrior parents!
 Burgess-Stocks, Joanna et al., Ostomy and Continent Diversion Patient Bill of Rights, 2022
 Burgess-Stocks, et al.
 Ileostomy - Caring for Your Stoma
 Contributor. Swimming with an Ostomy.
Burgess-Stocks, Joanna, Jeanine Gleba, Kathleen Lawrence, and Susan Mueller. “Ostomy and Continent Diversion Patient Bill of Rights.” Journal of Wound, Ostomy & Continence Nursing 49, no. 3 (2022): 251–60. https://doi.org/10.1097/won.0000000000000876.
Contributor. “Swimming with an Ostomy.” United Ostomy Associations of America, July 17, 2020. https://www.ostomy.org/swimming-with-an-ostomy/#:~:text=You%20can%20swim%20or%20be,harm%20or%20enter%20your%20stoma.
“Ileostomy-Caring for Your Stoma: Medlineplus Medical Encyclopedia.” MedlinePlus. Accessed May 11, 2023. https://medlineplus.gov/ency/patientinstructions/000071.htm.
“Ostomy.” MedlinePlus. Accessed May 11, 2023. https://medlineplus.gov/ostomy.html.
Hi! My name is Emily Fournier, and I am a wife, mom, and registered nurse currently living in MA. I graduated with my Bachelor’s Degree in Nursing in May of 2020. Since graduation, I have had experience working as a registered nurse in both a hospital intensive care unit and a community health center. Throughout my nursing career, I have had several opportunities to care for IBD patients of all ages, which has allowed me to gain a thorough understanding of IBD from a medical perspective. Through my friendship with an individual diagnosed with Crohn's disease at a young age, I have also been able to see how IBD affects every aspect of an individual, whether it be physically, socially, mentally, or emotionally. With Emily’s Gut Check, I hope to combine my medical expertise with a more holistic approach to IBD care in order to provide support and encouragement to anyone affected by IBD, but especially to parents of a child diagnosed with IBD. Please do not hesitate to reach out to me at firstname.lastname@example.org if you have any questions, need advice, or have an idea for a blog topic to cover. Thank you all for being on this journey with me!