Inflammatory Bowel Disease (FAQ)

Answers to questions families often have about caring for their child with inflammatory bowel disease

Inflammatory bowel disease (IBD) is a chronic immune-related disorder of the digestive tract. Normally, the immune system of the body only fights foreign invaders (colds and flus, infections). In IBD, the body inappropriately attacks its own intestines because of confusion and overactivity of the immune system. The term IBD covers 2 related disease entities: ulcerative colitis (UC), in which inflammation affects mostly only the large intestine, and Crohn’s disease (CD), where any portion of the digestive tract from mouth to anus can be affected. There are significant areas of overlap between the two and around 15% of children with IBD do not fit readily into either and are labeled as “indeterminate colitis” or IBD-U (inflammatory bowel disease unclassified type).

While a proportion of why people develop this disease is related to inherited genes, the bulk of a person’s risk for the illness comes from sources outside of a person (the environment). This may include things like too many antibiotic prescriptions in youth, whether a person was delivered via cesarean or vaginal method, chemicals and additives to foods, and the types of bacteria that live inside a person’s gut and the people around him or her. Overall, genetics accounts for perhaps 15% of IBD, and the environment accounts for 85% of IBD cases.

Although symptoms can vary depending upon the portions of the digestive tract involved, they often include chronic diarrhea that is sometimes bloody, abdominal pain, and weight loss. IBD can also cause issues in other areas of the body, sometimes called "extra intestinal" or "systemic" symptoms. These might include arthritis, mouth ulcers, or eye symptoms.

Definitive diagnosis requires all 3 of the following:

1. Symptoms such as diarrhea, rectal bleeding, abdominal pain, weight loss or growth disturbance, and/or fevers
2. Appropriate time course (symptoms on 2 or more occasions separated by at least 8 weeks or ongoing symptoms for at least 6 weeks)
3. Objective evidence of inflammation on endoscopy, radiology, and/or histology

Endoscopy involves the insertion of long, flexible camera tubes through the mouth and rectum to examine the inside of the stomach and intestines while taking tiny, pinpoint biopsies for examination under a microscope. This is done while a person is deeply sedated and comfortable with IV medications.

IBD is chronic and cannot be cured, but medication and other treatments can control the inflammation in the intestinal tract and eliminate symptoms. A “flare” is a time when symptoms are active and a “remission” is a time when symptoms are entirely quiet. The medical team’s goal is to keep a person entirely in remission. IBD has the potential to affect nutrition, growth, and puberty, yet most people with IBD live full and healthy lives. There are elite athletes in all major professional sports including the NHL and NFL who are performing at the highest level. There are physicians with IBD themselves who have gone through college and medical school.

About 20% of people with IBD have a relative with the disease.

Some people with ulcerative colitis can be managed with relatively mild aspirin-like medicines for the bowel while others need more aggressive therapy. Most patients with Crohn’s disease require lifelong immune-suppressing medications. Many patients with ulcerative colitis will eventually require surgical removal of the colon because of poorly controlled disease, or because of an increasing risk of colon cancer after a person has had the disease for a long time (usually >10 years). At least half of people with Crohn’s disease will require abdominal surgery. Nutritional, homeopathic, herbal, and over-the-counter products can offer additional benefits in a select few people, but are almost never enough on their own to control the disease.

Some children will need accommodations all the time at school while others will only need only a few accommodations intermittently, or not at all. Develop a plan for potential absences, including a way to get class notes and assignments, and a way to make up missed tests. Your daughter may, at times, need an unlimited bathroom pass, drink or snack privileges, or a rest period. See A Guide for Teachers to Inflammatory Bowel Disease (CCFA) and Help Your Child with IBD Adjust to School (Seattle Children's Hospital) for a 6-minute video with specific tips for parents working with schools to help the child with a diagnosis of IBD.

As with any chronic disease, there is a balance between trying to live as typical a life as possible and avoiding situations that might exacerbate disease. Instead of not taking exams, consider counseling, stress-relaxation therapy, or scheduling exams in a way that might not be as stressful, for instance, in a room by herself or with longer time to finish. Discuss options with your daughter's guidance counselor, with input from your daughter's gastroenterologist as necessary.