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Madisons Foundation - Moms And Dads In Search Of Needed Support

Ulcerative Colitis
Thursday, 22 January 2004
Thursday, 22 January 2004

What

Ulcerative colitis is a form of inflammatory bowel disease and is characterized by chronic inflammation in the rectum and large intestine (colon). This inflammation is harmful because it can lead to sores or ulcers in the colon, bleeding, diarrhea, and malnutrition. Children with this disease can have associated problems in their liver, eyes, or bones. The inflammation may eventually lead to colon cancer.

     Ulcerative colitis differs from the other type of inflammatory bowel disease (IBD), called Crohn's disease, because it does not cause inflammation deep within the intestinal wall and does not occur in other parts of the digestive system including the small intestine, mouth, esophagus, and stomach.

Who

Ulcerative colitis can occur at any age, but is most often seen between the ages of 15-30 years old. Children with ulcerative colitis are usually diagnosed by age 12. Ulcerative colitis affects boys slightly more often than girls. It occurs in approximately 2 per 100,000 children, and is more common in developed countries such as the United States. Fifteen to twenty percent of children with ulcerative colitis have a family member with the same disease. People of Jewish descent, particularly Ashkenazi Jews, have an increased risk of developing ulcerative colitis.

Signs and Symptoms

The following symptoms are often present:

- Abdominal pain and cramping

- Diarrhea (may or may not contain blood or mucus)

- Fever

- Weight loss

- Pale color

- Fatigue

- Loss of appetite

- Nausea and vomiting

- Poor or slow growth

Ulcerative colitis may also cause problems such as joint pain and swelling (arthritis), eye problems, liver disease, and weak bones (osteoporosis). Children may miss school or have a difficult time sitting through classes because of painful cramps, frequent diarrhea or nausea. Some children have remissions - periods when the symptoms go away - that last for months or even years. However, most patients' symptoms eventually return.

Possible Causes

The cause of ulcerative colitis is unknown at this time. It is believed that, with the combination of the genetic and environmental factors, an autoimmune response occurs, which is a malfunction in the immune system that causes it to attack the body's own healthy cells in the gastrointestinal system. For patients that are in remission, returning symptoms may be provoked by many factors, including infections or physical stress.  Researchers are currently studying if there are genetic differences in children with ulcerative colitis.

Diagnosis

The diagnosis of ulcerative colitis is made by viewing the inside of the colon with a special camera (colonoscopy). This is performed by a gastroenterologist and involves threading a thin flexible tube with a tiny camera into the intestine from the anus. During this procedure, tiny pieces (biopsy) of the colonic tissue are taken to be examined under a microscope. Blood tests often show low levels of red blood cells (anemia), high levels of white blood cells (inflammation or infection), low levels of protein (hypoalbuminemia), and a high "erythrocyte sedimentation rate" (ESR), a marker of inflammation. Stool tests are required to exclude an infection from bacteria, viruses, or parasites. CT scan, ultrasound, or X-rays of your child's abdomen may also be done to eliminate other gastrointestinal problems such as appendicitis and complications of ulcerative colitis.

Treatment

Treatment for ulcerative colitis is a multidisciplinary effort and can involve the primary pediatrician, a pediatric gastroenterologist, a surgeon, and others. The goal of treatment is to decrease inflammation, relieve symptoms, prevent relapses, optimize nutrition, facilitate normal social development, and avoid long-term disease-related complications. Specific treatment will depend on the severity of your child's illness.

     Mild disease will often respond to medicines called Sulfasalazine and Mesalamine. For moderate disease another group of medicines called corticosteroids may be used. They also work to prevent inflammation, but may have harmful effects on growth and bone development when used long-term. Therefore, corticosteroids are most effective when prescribed for short-term use. Other medicines used to stop inflammation are Azathioprine, 6-Mercaptopurine, Cyclosporin A, Methotrexate, Tacrolimus and Infliximab. For severe or intractable disease, surgery to remove the colon (colectomy) may be necessary and is curative.

Prognosis

The prognosis for each individual with ulcerative colitis varies. However, death from ulcerative colitis is extremely rare in children. With proper treatment, most individuals with ulcerative colitis can lead normal lives. Most often, children will have times when they have symptoms (relapses) and times when they are symptom-free (remissions). The most serious complication is colon cancer. About 5 percent of people with ulcerative colitis eventually develop colon cancer. This is why the annual routine colonoscopy with biopsies is recommended to screen for colon cancer. In children, a colectomy is indicated when the child's disease interferes with their growth and nutrition or with their ability to maintain a normal lifestyle (for example, going to school) or when a cancer is seen. Because ulcerative colitis is limited to the colon, a colectomy is curative.

Connect with other parents

In the spirit of community and support, Madisons Foundation offers the unique service of connecting parents of children with rare diseases. If you would like to be connected to other parents of children with this disease, please fill out this brief form.

Weblinks

Clinical Trials Website

http://www.clinicaltrials.gov/

This is a link to a website of research studies, including ulcerative colitis. It provides information about a trial's purpose, who may participate, locations, and phone numbers for more details.

Crohn's and Colitis Foundation of America Website

http://www.ccfa.org/

Parent friendly website with new information on clinical trials, recipes, industry sponsors

National Institute of Health Website

http://digestive.niddk.nih.gov/ddiseases/pubs/colitis/index.htm

Nice website with detailed medical information, graphics, medications, with an emphasis on adults more than children. Also in Spanish.

Reach Out for Youth

http://www.reachoutforyouth.org/

This is a support organization for children with ulcerative colitis. The website is for

parent, child and teen and is focused to calendar of events, clinical trials, advocacy.

Google Search for Ulcerative Colitis

References and Sources

http://disgestive.niddk.nih.gov/ddiseases/pubs/colitis/

http://www.nlm.nih.gov/medlineplus/ency/article/000250.htm

http://www.mayoclinic.com/health/ulcerative-colitis/DS00598 http://www.emedicine.com/ped/topic1183.htm

Ulshen M. (2000) Chapter 37 Inflammatory Bowel Disease. Behrman RR, Kliegman RM, Jenson HB, eds. Nelson Textbook of Pediatrics, 16th ed. WB Saunders, p 1150-54.

Chutkan RK. (2001) Inflammatory Bowel Disease. In Primary Care: Clinics in Office Practice. September 01, 28(3): 539-56.

Seidman EG (1996) Chapter 15 Chronic Inflammatory Bowel Diseases. In:

Rudolph AM, Hoffman JIE, Rudolph CD (eds) Rudolph's Pediatrics, 20th ed.

Appleton & Lange, p 1092-1097.