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Inflammatory Bowel Disease (IBD)

What is it?

Inflammatory Bowel Disease (IBD) is the most common chronic gastrointestinal illness in children and adolescents. About 1/3 of all persons with IBD have the onset of their illness before adulthood.

IBD consists mainly of two conditions – Ulcerative Colitis and Crohn’s disease. 

Ulcerative colitis (UC) is an inflammatory disease of the large intestine (colon). It is characterized by inflammation and ulceration of the innermost lining of the colon. Because the bowel is so inflamed, persons with ulcerative colitis experience diarrhea which is often mixed with blood. Urgency to have a bowel movement also occurs. A child or adolescent may have great anxiety about being able to reach a bathroom "in time". Abdominal pain is also a common symptom. Some young persons also experience pain in their knees, ankles, and other joints.

In about half of persons with UC, the disease affects only the lowest part of the colon (called the rectum). The inflammation of the bowel occurs in the rectum (called proctitis) and may extend up the colon in a continuous manner.

Crohn’s disease (CD) is a condition in which the wall of the small or large intestine becomes sore, inflamed, and swollen. In children and young adults, this causes abdominal pain, diarrhea, fever, and weight loss. Joint pain may also be present.

Crohn’s disease can affect any area of the gastrointestinal tract, from the mouth down to the anus. The inflammation may be "patchy" with segments of healthy tissue between the patches. The area most frequently affected by Crohn’s disease is the end of the small intestine and the large intestine.

Who gets it?

It is estimated that there are almost two million Americans with IBD. The northern tier of U.S. states has a higher incidence than the rest of the country.

The peak age at onset is between 10-30 years. About 25% of all patients are younger than 20 years old. Males and females are affected almost equally. There is a higher incidence in persons of Ashkenazic Jewish (Eastern European) ancestry.

IBD tends to run in families. When one family member has IBD, there is a 15-30% chance that there is another affected family member (first cousin or closer relation).

What are the symptoms?

The symptoms of ulcerative colitis, and particularly Crohn’s disease, in children may be vague. A wide range of symptoms may be present. A delay in diagnosis is common, as many of the symptoms do not suggest IBD at first.

In children, there are many other types of inflammatory bowel diseases that are not CD or UC. For instance, bacterial or parasitic infections of the bowel that cause inflammation are common at all ages; they are much more common than IBD in young children. These other causes of bowel inflammation must be considered, as most of them are curable with therapy.

Bloody stools and diarrhea are common symptoms of UC in children and adolescents. Most also have abdominal pain; the pain may be located over the lower left side of the abdomen. Fatigue, loss of appetite, and weight loss are common symptoms.

The most common symptoms of pediatric CD are diarrhea, abdominal pain and fever. The abdominal pain may be located over the right lower side of the abdomen. CD is sometimes diagnosed when a child develops pain that appears to be appendicitis. Loss of appetite and nausea may be present. Parents should be alert for persistent diarrhea and weight loss in children of this age group. A downward trend on children’s’ growth charts may be noticed when they visit the pediatrician’s office.

How is it Diagnosed?

There is no known cause of IBD and it cannot be prevented. Ongoing research is looking at IBD as a condition with many factors. Areas of research include genetics and environmental causes. Some studies indicate that IBD may be linked to an unknown bacteria or virus. Research has also indicated that persons with IBD may have an alteration in their immune system.

IBD is not contagious. It can not be spread among children.

Is IBD the same as Irritable Bowel syndrome (IBS)?

Many people confuse IBD and IBS. Both conditions tend to occur in young adulthood. However, IBD and IBS are very different conditions.

Irritable bowel syndrome is commonly known as "spastic colon". IBS is also a chronic disorder of the gastrointestinal tract. It is characterized by altered bowel habits (diarrhea and/or constipation), abdominal pain, and gaseousness. The hallmark of IBS is that the abdominal pain is relieved with a bowel movement. Although the symptoms of IBS can be distressing, there is no bowel inflammation with IBS. All diagnostic studies will be normal with IBS.

What should I do if I think my child has IBD?

Talk with your healthcare provider. If your child has symptoms of IBD, your healthcare provider should discuss the symptoms openly with your and your child. A thorough physical examination should be done. She/he will probably also order some blood tests to check for an inflammatory process or anemia. Referral to a pediatric gastroenterologist is warranted if the child’s symptoms and the blood work suggest IBD or are inconclusive.

Other studies will need to be done to diagnose IBD, Specific x-ray studies, such as an upper gastrointestinal series (upper GI) and/or barium enema may be necessary for diagnosis.

An endoscopic procedure to exam the small or large bowel is an essential test to determine if a child or adolescent has IBD. These procedures involve passing a thin flexible scope into the intestinal tract so that it can be evaluated for signs of IBD. Samples of the intestinal lining, called biopsies, can be obtained during these tests.

Even with these specialized studies, it may be difficult to tell which type of IBD a young person has. If this is the case, the diagnosis of "indeterminate colitis" is made.

What is the Treatment?

Currently, there is no medical cure for IBD. However, effective medical treatment is available which can calm the inflammation, and relieve the symptoms of diarrhea, abdominal pain, and rectal bleeding.

The medical therapy for IBD in children and adolescents is similar to the approach in adults. Although it appears that medications are generally safe and effective, they must be closely monitored for side effects.

Some of the most common medications used to treat IBD in children are 5-aminosalicylates (5-ASA) and sulfasalazine. They can be given orally or rectally and alter the body’s ability to create and maintain inflammation. They ease diarrhea, rectal bleeding, and abdominal pain.

Steroids, such as prednisone and prednisolone, must be given very cautiously in this age group. Steroids are powerful antinflammatories which can ease moderate to severe IBD. These medications are very effective, but have the significant side effect of slowing linear (height) growth. Because of side effects, many pediatric medication strategies are designed to eliminate reliance on prednisone. When steroids are necessary, they are given for the shortest time possible in the lowest effective dose.

Another group of drugs allow the majority of young persons with IBD to markedly decrease or eliminate the need for prednisone therapy. This group is called the "immunomodulators". Medications in this group include azlothioprine, 6-mercaptopurine (6-MP), and cyclosporine. They alter the body’s immune cells from interacting with the inflammatory process. As a result, they relieve the symptoms of IBD.

Surgical treatment for children

In some pediatric patients, medical therapy is not complete, or complications arise. Under these circumstances, surgery may be considered. Differing from Crohn’s disease, which can recur after surgery, ulcerative colitis is "cured" once the colon is removed.

For UC, newer surgical techniques have been developed to remove the colon, maintain bowel continuity and continence, and avoid a permanent ileostomy. This technique involves creating an internal pouch from the small bowel and attaching it to the anal muscle. This allows the individual to maintain bowel continuity and pass bowel movements through the newly-constructed pouch. A permanent stoma is avoided.

What resources are available to learn more about IBD or support those with IBD?

An IBD support group meets bi-monthy at Penn State Milton S. Hershey Medical Center. Persons with IBD and their family members or support persons are welcome. Please call (717) 531-6058 or (717) 531-8867 for more information.

Books: Inflammatory Bowel Disease: A guide for Patients and Their Families (2nd ed.) by Stanley H. Stein D.O. and Richard P. Rood M.D. (1998)

The Ileal Pouch Anal Anastomosis: A Patient Guide – available through Penn State Milton S. Hershey Medical Center Dept. of General Surgery – call (717) 531-5164

The Crohn’s and Colitis Foundation of America (CCFA) has many pamphlets available – call (800) 932-2423

Physician's Who Treat IBD


This information has been designed as a comprehensive and quick reference guide written by our health care reviewers.  The health information written by our authors is intended to be a supplement to the care provided by your physician.  It is not intended nor implied to be a substitute for professional medical advice. 

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This page was last updated on October 31, 2006
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