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

​Preschool and Early Elementary School Age (3-7 Years)
At this age, children typically have limited understanding of complex medical terms. You may choose to begin by explaining that there's something inside their tummy that's not feeling well. You can use a gentle analogy, such as suggesting that their tummy is a "tummy superhero" that is fighting against a tricky villain. You may choose to create a simple storybook or use drawings to illustrate the concept of IBD. Continuing with the superhero analogy, you may choose to describe how doctors and medicines are their tummy’s “sidekicks” helping to make their tummy feel better and fight against the villain. There are several other analogies you can use to help your child understand their diagnosis. Feel free to research and pick one that works for your child! Emphasize that they are not alone, and you, along with medical professionals, are there to help. Reassure your child that there is nothing they did to cause this diagnosis and that you love them no matter what.
 
Late Elementary School Age (8-12 Years)
At this age, you can explain your child’s diagnosis in a little more detail. Explain that IBD is a condition where their digestive system becomes inflamed, being sure to use age-appropriate terms like "inflammation" instead of complex medical jargon. Ensure your child understands that the GI tract is responsible for the digestion of food, absorption of nutrients, and elimination of waste. Explain that the GI tract starts at the mouth and continues until the rectum, and the inflammation in the GI tract is what is causing symptoms. Because your child is able to understand more at this age, you can begin to expect a lot more questions. As previously discussed, be honest and patient in answering them. If you do not know an answer to a question, do not make the answer up! Instead, walk through the process of finding the answer to the question together. Call your child’s doctor’s office or speak with another healthcare professional. You can also use diagrams, pamphlets from your doctor’s office, or trusted educational websites geared towards children to clarify any questions. Walk through the process of determining the answer together. This gives your child the proper foundation for navigating their condition independently in the future. Additionally, going forward, make sure to involve your child in the process of managing their IBD as much as you can. Discuss treatment options and involve them in decisions when appropriate. This can not only teach them skills they will need to independently manage their condition in the future, but it will also help them feel a sense of control over their diagnosis.
 
Teenagers (13-18 Years)
Teenagers can grasp more complex concepts, therefore, be sure to explain IBD to them in much more detail, including IBD’s impact on daily life, potential triggers, and the importance of medication and diet. You and your teenager are a team! It is important to note that after the initial conversations about IBD, start to encourage your child to take more responsibility for managing their health. You can do this through continued conversations in which you teach your child how to track symptoms, manage medications, and communicate with doctors. Ensure your child can name and take all their scheduled medications independently, understand and navigate health insurance, schedule appointments for themselves, and talk to medical professionals about their symptoms/treatment options. As you encourage your child to become more independent in managing their health, be sure to acknowledge that the emotional aspect of living with a chronic condition may begin to impact your child more. Address this concern with your child by thoroughly discussing how to cope with stress, anxiety, and any feelings of isolation, and encourage them to seek support from friends, family, or support groups. Remember, your child will need to be able to independently manage their condition soon. As a parent or caregiver, you can give them the tools and building blocks to do so from the very first conversations you have about IBD.
 
Tip #3: Understand the diagnosis.
Before you can have serious discussions with your child about IBD, it's essential to have some knowledge of the diagnosis yourself. IBD is a complex condition. Do some research to learn about its symptoms, treatment options, and what to expect in terms of quality of life and daily routines. This knowledge will enable you to answer your child's questions with confidence and provide them with the most accurate information. However, remember that you do not have to know all the answers, and if you are unable to answer a question, be honest with your child. As mentioned earlier, let your child know that you are unsure, and walk through the process of finding the answer together! It’s okay to say contact a healthcare professional together or find an answer on a trusted website when appropriate.
 
Tip #4: Normalize your child’s feelings.
Let your child know that it's normal to feel a range of emotions, including fear, sadness, or anger. Offer reassurance that these feelings are valid and that you're there to support them. If your child does express their emotions, let them know that they are already showing incredible strength and courage to do so. Give them praise for sharing their true feelings. After offering praise, extend support by guiding and encouraging your child to focus on what they can control. Emphasize that while some aspects of IBD may be out of their control, there are actions they can take to manage their condition, such as following a treatment plan, maintaining a healthy lifestyle, and seeking support from healthcare professionals. Again, reassure your child of your continued love and support.
 
Tip #5: Give your child some encouraging facts.
When you start to have those initial conversations about IBD with your child, it is important for your child to know a few encouraging facts early on.

• Ensure that your child understands that IBD is not their fault. Acknowledge that there is not anything that they ate or did to inflict IBD on themselves. You may want to consider mentioning that the exact cause of IBD is unknown, and explain the most widely believed theories and latest research on this topic at an age appropriate level.
• It may also be encouraging for your child to discuss that they are not the only ones living with IBD. In fact, there are many successful people living with IBD in many different roles and settings, including sports, entertainment, business, and advocacy.
• You can explain that generally speaking, individuals with IBD spend more time healthy (in remission) than they are sick (in flare).
• Explain to your child that the challenges of living with a chronic illness can give them a unique perspectives on life. Many people with IBD develop a deep appreciation for the little things and a strong sense of empathy for others facing difficulties.

 
Tip #6: Involve healthcare professionals.
Your child's healthcare team can play a vital role in helping them understand and manage their IBD. Consider involving your child’s pediatric gastroenterologist, nurse, or child life specialist to further explain the diagnosis, medications, and treatment options to your child. These professionals are experienced in communicating with children and can provide valuable support and information. They also may be able to direct you and your child to age-appropriate resources and educational materials for IBD, such as websites, books, pamphlets, or organizations.
 
Tip #7: Connect with support networks.
IBD Connect can offer you valuable resources, support groups, and educational materials to help you navigate the journey of talking with your child about their IBD diagnosis. Consider reaching out to us to connect with other parents and children who have gone through similar experiences. Sharing stories and tips can help both you and your child feel less isolated and more informed. Getting involved in support groups can also give your child the opportunity to meet other children with IBD. The support, camaraderie, and understanding offered from peers becomes increasingly important as your child ages. Start building connections now!
 
Hopefully, the information on this page gives you a little more confidence in your ability to have conversations about IBD with your child. Remember, telling your child about their IBD diagnosis is a process that evolves as they grow. Tailor your conversations to their age and maturity level, and remember to provide ongoing support and reassurance. Keep the lines of communication open, so they feel comfortable discussing their feelings, concerns, and questions with you. Together, you can navigate the challenges of IBD as a team, ensuring your child receives the care and understanding they need to thrive. If you would like more information or support, feel free to email me or contact another member of the IBD Connect team through our main website. My email address is linked below. If you are interested in connecting with a support group to discuss topics like this one more thoroughly and gain some practical insight, feel free to click the link below for more information! Finally, I would just like to give one final reminder not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Stay strong IBD Warrior families and go tackle those tough conversations with confidence!

With the school year well underway, you may be questioning the title of this blog. Traveling with IBD? Why talk about travel at this point in the year? There are several reasons why talking about travel now is timely. First, as a parent to a child with IBD, it is my hope that you are able to take the main discussion points from this post into consideration as you plan upcoming family trips. Maybe your family would like to schedule a vacation over winter or spring break this school year. Maybe you are already planning a summer vacation for next year! Hopefully the information in this blog equips you to adequately prepare in advance for these types of trips. Second, sometimes travel is unexpected! You may need to travel with your child for a family emergency or another similarly sudden situation. The information that you read about traveling with IBD today may be fruitful to your family at a later date. Third, while this blog is mainly geared towards parents or caregivers of a child with IBD, there is a diverse audience of readers. Individuals diagnosed with IBD who travel for work or personal reasons may benefit from some of the tips suggested in this post. Traveling is one of life’s greatest pleasures, and it’s something that everyone should have the opportunity to experience if desired, regardless of their health condition! Individuals with IBD may face unique challenges when it comes to traveling, but with careful planning and preparation children and adults with IBD can explore the world while effectively managing their condition. It is my hope that this post imparts valuable tips to empower you and your child to travel with confidence and peace of mind!
 
Before we begin, please note that this page is not intended to be a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Additionally, please note that this page only provides a brief overview of traveling with IBD in the form of suggested tips. For more comprehensive information, you can communicate with your child’s doctor or another healthcare professional. You can also talk to other parents of children with IBD for more suggestions on how to smoothly travel with an IBD diagnosis. The support groups at IBD Connect would be a great opportunity to ask these types of questions to other people! Now, let’s dive into the content.
 
Tip #1: Talk with your child’s doctor.
The first step in creating travel plans is to talk with your child’s doctor to ensure that your child’s condition is stable and well-managed. Remember, you will not be in close proximity to your child’s treatment team and the medical facilities in which you are most comfortable with. If your child is in flare, going through a medication change, or has an upcoming colonoscopy, it may not be an appropriate time to plan an extended trip or vacation. If traveling is a necessity, let your child’s doctor know so that you are able to follow medical advice and the best course of action for your child’s health and wellbeing. If you are traveling to a different time zone, discuss your child’s current medication schedule and ask about any dose and/or schedule adjustments you may need to make. If you are traveling internationally, inquire about the vaccination requirements/recommendations for your child.
 
Tip #2: Research physicians, pharmacies, and hospitals in the travel destination.
Before your trip, research medical facilities, including: hospitals, gastroenterologists/IBD specialists, and pharmacies in the areas you'll be visiting. Keep a list of the name, the address, and the phone number of each facility that you find. You may choose to type your list out on your phone or other electronic device to ensure you don’t lose access to all the information you’ve gathered in lost/delayed baggage. If you choose to write out your list with traditional pen and paper, make sure you carry it within your carry-on bag. Better yet, take a picture of your list on your phone so you have it in two locations! For help with gathering information, you can ask your child’s doctor for the names of physicians in the areas you plan on visiting. If you are traveling internationally, you can also consult the International Association for Medical Assistance to Travelers https://www.iamat.org/. They will be able to provide you with a list of English-speaking doctors in several countries. You can also look up the U.S. embassy or consulate in the country you will be visiting. There should be a list of healthcare providers that you can access during your stay.
 
Tip #3: Make a plan for prescription medications.
If your child is on prescription medications, it is important that you have a medication management plan for travel. As previously mentioned, prior to travel, you should discuss your child’s medication schedule with his or her physician. There may need to be dose/schedule changes to account for different time zones or travel circumstances. You will also want to request a typed, signed document from your child’s physician describing your child’s medical diagnosis and any current medications your child is taking. Make copies of this document and carry it in several different locations, as it may be necessary with customs officials or in an emergency. Similarly, you should bring copies of all the current medication prescriptions for your child. If you are traveling internationally, you may want to research any foreign brand names of your child’s medications so you are well prepared if there is an emergency. Contact your child’s pharmacist if you are planning on taking any medications out of the country, as other countries have different medication laws. Certain medications that are legal to take or have a prescription for in the United States are illegal in other countries. Your pharmacist should be able to help you determine how to navigate these types of situations. Ensure that you pack more medication than you anticipate needing in case you run into travel delays or have a medical emergency. Make sure to pack the medication, as well as any nutritional supplements, in the original labeled container. Finally, pack your child’s medication in a carry-on bag to prevent lack of access if baggage is lost, delayed, or misplaced.
 
Tip #4: Make a bathroom plan!
Bathrooms are always a concern, aren’t they? To make sure you and your child are at ease, try to map out bathrooms the same way that you currently do in your day-to-day life. If you are flying, try to book seats as close to the bathroom as possible. If your child is old enough to go to the bathroom alone, you may consider having him/her sit in the aisle seat to minimize disruptions. If you are planning a road trip or staying within the U.S. for your travels, you can download the “We Can’t Wait” app by the Crohn’s and Colitis Foundation (https://www.crohnscolitisfoundation.org/wecantwait). This is a restroom finder app that uses participating businesses/establishments and crowd sourced restrooms to provide a simple way to quickly locate public bathrooms. The Crohn’s and Colitis Foundation also has an “I Can’t Wait” card that you can use to show business owners or managers to help explain IBD in easy to understand language. This will hopefully help to grant your child access to an employees’ only bathroom or skip a long bathroom line. According to this Crohn’s and Colitis Foundation, this resource is available by calling 888-GUT-PAIN (888-694-8872). More information is available at this link: https://www.crohnscolitisfoundation.org/get-involved/become-member/individual-membership. You can also make a “to-go” bag for urgent bathroom needs that contains an extra change of clothes, extra underwear, plastic bags for soiled clothes, toilet paper/wipes, hand sanitizer in small TSA approved containers, and any other essential bathroom items your child may need. If you are traveling internationally, try to learn certain words or phrases that may help you with locating a bathroom. You can also download translation apps onto your phone.  
 
Tip #5: Pack extra supplies.
Packing for a child with an IBD diagnosis requires extra preparation and planning, as there are additional items that need to be considered. Some of these items were mentioned previously, but here is a more comprehensive packing list of  the “extra supplies” you may want to consider when traveling:
·      A typed and signed note from your child’s physician describing your child’s medical diagnosis and list of prescribed medications
·      Copies of your child’s prescriptions
·      Health insurance card/information
·      Contact information of your child’s doctor
·      Prescribed medications, including spare medication, in the original containers
·      Nutritional supplements in the original containers
·      List of local hospitals, gastroenterologists/IBD specialists, pharmacies in the area you are traveling to
·      “To-go” bag with a change of clothes, extra underwear, plastic bags for soiled clothes, toilet paper, wipes, hand sanitizer, etc.
·      If your child has an ostomy, make sure to pack ostomy supplies. Pack more than anticipated in case of travel delays or unexpected circumstances.
·      Food and snacks that you know will not cause your child any discomfort and align with any dietary restrictions
·      Bottled water and rehydration packets
·      Travel insurance documentation
 
Tip #6: Familiarize yourself with TSA guidelines.
Make sure you familiarize yourself with the TSA guidelines for disabilities and medical conditions found here:  https://www.tsa.gov/travel/special-procedures. They also have a downloadable card that you can find on their website, print, fill out, and hand to an agent. If you have an ostomy, you may need to alert the agent. All ostomy supplies should be permitted through security. Finally, keep in mind that if your child has any liquid medication that exceeds the 3-1-1 rule (3.4 oz), you may need to make a verbal or written declaration of this to the TSA agent. This is where documentation from your doctor may be helpful as well.
 
Tip #7: If you are traveling internationally, be aware of some extra considerations.
Double check with your current insurance company to see if your health insurance policy covers any international medical services (hospital visits, doctor visits, prescription medication, etc.). If necessary, do your research and purchase comprehensive travel insurance that covers medical emergencies, including IBD-related complications. As previously mentioned, you may want to familiarize yourself with the foreign brand names of your child’s medications, as well as words/phrases in the local language that will assist you in finding bathrooms or explaining a medical emergency. Be sure that you have an app, browser, or device that will assist you with translation should you need it. Finally, be aware that traveler’s diarrhea is fairly common with international travel. Diarrhea can cause dehydration, which can worsen IBD symptoms and lead to further complications. There are several things that you can do to try and prevent your child from developing traveler’s diarrhea. For example, never have your child drink tap water, unless the water has been boiled first. This even includes the water used while brushing teeth! Avoid ice, ice cream, raw meat, raw vegetables, uncooked/unpasteurized dairy products, and food from vendor’s carts. This is not a comprehensive list of interventions. If you are traveling internationally, you can discuss further interventions with your child’s healthcare provider to get a more thorough understanding how to prevent any illness.
 
Tip #8: Plan for ways to make sure your child’s basic medical and emotional needs are met throughout the day.
Use your best judgement and common sense when traveling with your child with IBD. If you have the opportunity to plan your trip over an extended period of time, ensure that the travel days are not significantly overwhelming or stressful for your child, as stress can trigger or exacerbate symptoms. If you are planning on a road trip, plan for frequent bathroom breaks and rest stops. Pack “safe” food and snacks that are gentle on your child’s digestive system and align with any dietary restrictions. Ensure access to safe, clean water (i.e. bottled water), as well as rehydration solutions. It may be helpful to research the menus of restaurants in your travel destinations ahead of time. Make sure there is something on the menu that your child is able to eat and enjoy! Be mindful of infection risk and practice diligent handwashing. Finally, make sure your child has some comfort items packed, such as a blanket, pillow, favorite toy, favorite book, travel seat cushion, etc.
 
Tip #9: Have an emergency plan in place.
As previously mentioned, ensure that you pack a typed and signed note from your child’s doctor explaining their diagnosis and list of current medications. It may be helpful to also have a typed action plan from your child’s doctor in case your child’s condition suddenly worsens, as well as the doctor’s contact information. Ensure that you pack your health insurance card/information, any additional traveler’s insurance information, your list of doctors/hospitals/pharmacists in your travel destination, current medications, and any medical supplies you may need. Trust your instincts. Research and understand emergency symptoms that require immediate medical attention in an IBD patient. Be smart and be safe!
 
Tip #10: Have fun!
Finally, the last tip is to have fun traveling! If your trip is a planned family vacation or special trip, take the time to enjoy it! You, and your child, will be able to relax and enjoy the trip more if you take the time to do your research and plan in advance for the unexpected. Remember, traveling with IBD requires preparation, but it's entirely manageable with the right approach. By following these tips and embracing the adventure, you and your child can explore the world with confidence and experience the joy of travel while managing your child’s condition effectively.
 
Hopefully, the information on this page gives you a little more confidence in your ability to travel with your child with IBD. With the right knowledge and support, you can enjoy your journey with confidence, explore new places, and create lasting family memories! If you would like more information or support, feel free to email me or contact another member of the IBD Connect team through our main website. My email address is linked below. If you are interested in connecting with a support group to discuss topics like this one more thoroughly and gain some practical insight, feel free to click the link below for more information ! Finally, I would just like to give one final reminder not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Stay strong IBD Warrior families, and safe travels!