Dealing with inflammatory bowel disease (IBD) as a child is even more challenging. That is why the Crohn's & Colitis Foundation of America (CCFA) proudly established Camp Oasis over a decade ago. This co-ed residential camp program enriches the lives of children with Crohn's disease and ulcerative colitis by providing them with a safe and supportive camp community.
Additional Support Groups
Eosinophilic disorders support community. Find information on eosinophilic esophagitis, gastritis, colitis, and other eosinophil-related diseases.
Advice From Kids & Teens
When I was first diagnosed…
“Ulcerative Colitis is hard at first, like the procedures are miserable. Taking the meds are annoying. You’re going to be tired a lot. Some natural choices for getting better are fecal transplant, diet, and acupuncture.”
“Make it feel like home. I put up posters, decorated, brought my own blanket and pillow, and even got my puppy cleared to come visit me at Shands. Bring a journal or poster board. Have all your visitors sign it, so you can remember the stay as a fun time. Don’t be afraid to ask questions. The doctors and nurses are there to inform you of your condition, so ask about it. Knowing what is going on puts me at ease and it could also help you. Plan a movie night. Invite some friends to come see you and when they are there, it will feel like you aren’t even in the hospital. Most importantly, just relax. Everything will work out in some way!”
“First tip to surviving the hospital is try to stay positive. I know it’s hard and stressful, but try to make jokes, lighten your mood. Soon you will grow tired of the same dull room. So, try a stuffed animal or pillow from home. Whatever helps you cope. And don’t forget, your doctors are just trying to help, not ruin your fun social life!”
Friends & Family 411
“Most likely your friends have noticed that your new friend is the bathroom. Only your true friends will realize your condition is something you can’t help and they need to support you. If there are any people who bother you or poke fun at your condition, they aren’t true friends.”
Tips From Our Doctors & Nurses
When you are first diagnosed…
IBD symptoms may disappear at times, but you never know when they’re going to become a problem. If you are prepared and take care of yourself, these symptoms won’t limit your life. Remember, you are more than IBD. Accept your illness and continue to do what you enjoy, and explore the activities you enjoyed before IBD. If needed, modify your activities so you can participate to your fullest potential. Try to form friendships with people who understand and support you. Exercise can improve overall health, reduce stress, and help to maintain and improve bone strength.
Medications & Procedures
No matter what age, I think every child or teen with IBD should be involved in the care plan. This helps them gain responsibility and some control.
Do not stop/change/alter medication regimen without consulting your physician.
I think it’s important to communicate with all the teachers and staff at school. Even if you’re feeling great, it’s good to let the school know that you have IBD and may have a flare-up in the future. Lots of my patients have 504 plans in place. These allow them to continue to go to school with special accommodations if needed, such as better restroom access and stop-the-clock testing.
Many of my patients are very busy with extra-curricular activities. I take care of many athletes. As long as you pay attention to your body, stay hydrated and eat well, and communicate with your teachers/mentors/coaches/parents if you are having any symptoms, you can continue to be very active.