Rhode Island Medical Home Portal - Inflammatory Bowel Disease

Introduction

The Questions and Answers that follow aim to provide an introduction to inflammatory bowel disease (IBD) for parents and other family members. Following those, we offer links to selected resources for more information and support and a list of valuable services.

Note that we use the term doctor to refer to physicians, nurse practitioners, physician assistants, and other licensed clinicians who may care for your child.

More information about many topics relevant to children with IBD and many other chronic conditions and their families can be found in the left menu.

What is inflammatory bowel disease and what causes it?

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.

What are the symptoms of inflammatory bowel disease?

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.

How is it diagnosed?

Definitive diagnosis requires all 3 of the following:

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

What is the prognosis?

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.

What is the risk for other family members or future babies?

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

What treatments/therapies/medications are recommended or available?

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.

What should I tell the school nurse about the needs of my daughter with IBD?

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.

If stress can trigger IBD symptoms, should my daughter be taking final exams in high school?

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.

Resources

Information & Support

Where can I go for further information?

For Parents and Patients

Support

Crohn's & Colitis Foundation of America (CCFA)
Credible disease information with an extensive “kids and teens” section, information about summer camps, and lists of support groups at the local level.

General

IBD & Me Activity Book (CCFA)
Contains cartoons, games, and activities that help children learn about inflammatory bowel disease; Crohn's and Colitis Foundation of America.

A Guide for Teachers to Inflammatory Bowel Disease (CCFA)
Information for school personnel about the diagnosis, sports participation, and planning for potential school absences; Crohn's and Colitis Foundation of America.

Ulcerative Colitis (MedlinePlus)
Information for families that includes description, frequency, causes, inheritance, other names, and additional resources; from the National Library of Medicine.

Crohn's Disease (MedlinePlus)
Information for families that includes description, frequency, causes, inheritance, other names, and additional resources; from the National Library of Medicine.

Inflammatory Bowel Disease (KidsHealth.com)
Family-focused information about IBD; from the Nemours Foundation.

Caring for your Child with IBD (Johns Hopkins Health Book)
A 304-page resource for the family living with IBD; by the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition.

Help Your Child with IBD Adjust to School (Seattle Children's Hospital)
Six-minute video with specific tips for parents working with schools to help the child with IBD.

Just Like Me! Teens with IBD (CCFA)
Information for teens with IBD including an ask-the-expert section, a chat room, and "Hot Topics" related to dating, family, friends, and school; Crohn's & Colitis Foundation of America.

Patient Education

Parents' Guide to Inflammatory Bowel Disease (CCFA)
Provides information about diagnosis and treatment, helpful tips for lifestyle changes, and resources for emotional support; Crohn's and Colitis Foundation of America.

Studies

Inflammatory Bowel Disease (clincialtrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Authors & Reviewers

Initial publication: August 2012; last update/revision: September 2016

Current Authors and Reviewers:

Author:

Mark Deneau, MD

Funding: The Medical Home Portal thanks the 2011-2012 URLEND Medical Home Portal trainees group for their contribution to this page.