ibd keyI really try to introduce myself first and my diagnosis later, and I try not to let it run my life.

An adolescent with Crohn’s Disease


The Inflammatory Bowel Disease (IBD) Experience Journal is a collection of stories and personal experiences from patients and families about what it has been like to live with pediatric IBD, such as Crohn’s disease and ulcerative colitis, which are chronic illnesses causing inflammation of the digestive system. These stories represents the “collective wisdom” of these families as well as their health care providers.

This journal focuses on the general experience of living with IBD, however, if you are interested in reading narratives related to a particular diagnosis, you may do so easily:

  • Crohn’s Disease stories appear in purple
  • Ulcerative Colitis stories appear in green

While it is normal to feel some emotional discomfort associated with reading the stories of children and parents describing their experiences with pediatric IBD, we hope that families may learn from the stories of others facing similar experiences.

Visit the Glossary to read definitions for words in bold. Visit our Resources page to learn more about family and clinician recommended websites on IBD.

Video Interviews:

Child & Adolescent Stories:

I can do anything—that is so corny, like from a Hallmark card or something but I can do anything, which is really cool. It is just the intensity that varies. I was on the tennis team in high school and in college. I’ve ridden horses since I was four. I just couldn’t do everything I wanted to do exactly as I wanted to do it.

Caregiver Stories:

Educate yourself. Keep the faith. Get your own support someplace too. Take care of yourself, exercise, or get a massage so that you are better able to be a good support and maintain a good frame of mind. There are a lot of people out there going through this, myself included, who want to reach out and help others. You don’t have to feel so alone.

Clinician Insights:

We’re very willing to work with families and patients to get their lifestyle as they would like it to be. One of the ways of doing that is to share the information that the child has a problem, and not to keep it a secret. It’s important to bring teachers, ministers, and extended family members in, so that there is a sense that the child has a support structure around him or her that he or she can use for coping.

Richard Grand, MD, Director Emeritus, IBD Program

A group of parents and health care providers has reviewed this journal for appropriateness.The IBD Experience Journal was created by the Boston Children’s Hospital Inflammatory Bowel Disease Center and the Department of Psychiatry.


Editor’s note: Please keep in mind that every patient is different, and discussions of alternative treatments, complications, and timelines may not apply to you. Additionally, some families identify medications and treatments that work well for them. The Experience Journals do not endorse specific methods. Each individual is different, and we invite you to discuss treatments with your doctors and nurses to see if they are right for you.