Overview

Ulcerative colitis is an inflammatory bowel disease (IBD). IBD is a general term for noninfectious conditions that involve chronic inflammation of the intestines, causing symptoms such as diarrhea, abdominal pain, fevers, bleeding and growth problems.

Crohn's disease is another kind of IBD, as is a more unusual form called microscopic colitis. Although ulcerative colitis and Crohn's disease are often difficult to distinguish from each other because they have many of the same symptoms, they affect the digestive tract differently.

Ulcerative colitis is limited to the colon. In 80 percent of children, it affects the entire colon, but in some it is limited to the lower part and called left-sided colitis or proctitis. Crohn's disease, on the other hand, may involve any part of the digestive tract, from the mouth to the anus. Another difference is that the inflammation doesn't extend as deeply into the intestinal wall in ulcerative colitis as it does in Crohn's disease.

About 25 percent of IBD cases begin in childhood, even in children under age 2. Diagnosis is often delayed because IBD is confused with other conditions, such as lactose intolerance, a stomach virus or school avoidance behavior.

The condition can be inherited and is common in some families. About 20 to 25 percent of people — and up to 40 percent of very young children — with ulcerative colitis have a close relative with ulcerative colitis or Crohn's disease. The immune system's response to certain bacteria in the gut and the patient's genetic makeup are believed to be the primary causes.

In UCSF's IBD Program, a medical team of doctors, nurse practitioners, dietitians, social workers and other consultants — including pediatric experts in psychology and psychiatry, infectious diseases, rheumatology, dermatology, ophthalmology and surgery — work together to provide your child and family with optimal and state-of-the-art care. Please feel free to request information about our program at any time.

Signs & symptoms

The first symptom of ulcerative colitis is often blood in the stool or persistent and sometimes progressively worsening diarrhea. The bloody stool may be accompanied by abdominal pain, cramps and a severe urgency to have a bowel movement.

Other symptoms may include:

  • Anemia
  • Fatigue
  • Fever
  • Joint pain
  • Rectal bleeding
  • Skin or mouth lesions
  • Weight loss

Because blood loss, chronic diarrhea and inflammation can reduce the amount of nutrients absorbed from food, some children with ulcerative colitis have stunted growth and delayed puberty.

Diagnosis

Your child's doctor will first do a physical examination and take a medical history. There's no single test for diagnosing ulcerative colitis, so if the doctor suspects ulcerative colitis, a series of tests is required to make a definitive diagnosis. Tests may include:

  • Blood Tests — Blood tests check for anemia, which may be a sign of bleeding in the intestines. They can also detect a high white blood cell count or elevated levels of C-reactive protein, both markers of inflammation.

  • Stool Sample — Shows whether there is bleeding, inflammation, or infection in the intestines.
  • Magnetic Resonance Enterography — Provides detailed images of the small bowel that can pinpoint areas of inflammation, bleeding and other problems. Before the test, your child drinks a contrast material (sometimes just milk is enough) to highlight the small bowel in the images. MR enterography is noninvasive and does not involve radiation or expose your child to any radiation.
  • Colonoscopy — Allows the doctor to examine the entire length of the colon, using a long, flexible tube about as thick as your index finger with a tiny video camera and light on the end. Video images from the camera appear on a monitor. A colonoscopy is done under anesthesia in most children.
    As the colonoscope is pulled back out, the doctor gets even better views and can do a more careful examination. The colonoscope may also contain built-in instruments for taking tissue samples. Later, the doctor can further evaluate what's going on by examining these tiny biopsies of the lining (tissue) of the colon under a microscope.
  • Upper Endoscopy (aka esophagogastroduodenoscopy or EGD) — Enables the doctor to examine the upper GI tract, from the mouth through the esophagus, the stomach, and the first part of the intestine (as far as the duodenum and sometimes the first part of the jejunum). Like a colonoscopy, this procedure is usually done under anesthesia using a flexible tube with a tiny video camera and a light. Video images are shown on a monitor, and tissue samples can be taken for the doctor to examine later under a microscope.
  • Capsule Endoscopy (or PillCam) — No anesthesia or sedative is needed for this test. The child swallows a capsule containing a light and a camera, which takes pictures of the entire intestinal tract as it travels from the stomach to the colon and eventually out of the body in the stool – typically a four- to five-hour process. (Sometimes a test capsule is given first, to make sure there's no intestinal stricture that might block its passage.) The disadvantage of capsule endoscopy is that no tissue is obtained for later study under a microscope.
    Note: The capsules are quite large, and smaller children can't always swallow them. In that case, the capsule is put into the intestine during an upper endoscopy.

Treatment

Treatment for ulcerative colitis varies depending on the seriousness of the disease. Most people need long-term medication to relieve symptoms and control the problems. In severe cases, surgery may be required to remove the diseased colon, which cures the disease.

Medications and Nutritional Therapies

Medications for ulcerative colitis may improve your child's quality of life by inducing and maintaining remission, or at least provide symptom-free periods. The four most commonly prescribed types of medications — aminosalicylates, corticosteroids, immunomodulators and biologic medicines — all work by reducing inflammation. Newer medications, such as biologics, are under investigation to see if they help children with ulcerative colitis.

Nutritional therapies are mainly used to supplement the diet and medications, and are not effective alone.

Surgery

Most children who don't respond to medication will get relief from a surgical procedure known as an ileal pouch-anal anastomosis (IPAA). During the procedure, the surgeon removes the colon and the inner lining of the rectum, leaving the rectum's outer muscle in place. The end of the small intestine, called the ileum, is then pulled through the rectum and attached to the anus. After the procedure, children can pass stool normally, although bowel movements may be more frequent and watery.

Depending on the individual case, the UCSF pediatric surgeon may be able to perform the procedure laparoscopically, using tiny instruments and small, Band-Aid-size incisions. Patients who undergo laparoscopic procedures have less pain, a quicker recovery and a shorter hospital stay.

Research

One focus of the UCSF IBD team is to find new and sometimes experimental ways to improve the management and long-term outcomes of our patients, often through multinational research projects. Patients may have the option of participating in research trials of new therapies for IBD.

We also track the progress of almost all our patients to help improve the treatment options and information we can offer future patients.

UCSF Benioff Children's Hospitals medical specialists have reviewed this information. It is for educational purposes only and is not intended to replace the advice of your child's doctor or other health care provider. We encourage you to discuss any questions or concerns you may have with your child's provider.

Where to get care

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Inflammatory Bowel Disease (IBD) Program

Inflammatory Bowel Disease (IBD) Program

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