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QUESTIONS & ANSWERS ABOUT ULCERATIVE COLITIS

What is ulcerative colitis?

Ulcerative colitis is an inflammatory disease of the colon, the large intestine, which is characterized by inflammation and ulceration of the innermost lining of the colon. Symptoms characteristically include diarrhea with or without rectal bleeding and often abdominal pain. Ulcerative colitis may affect only the lowest part of the colon, the rectum, and be termed ulcerative proctitis. If the disease affects only the left side of the colon, it is called limited or distal colitis. If it involves the entire colon, it is termed pancolitis. Ulcerative colitis differs from another inflammatory bowel disease, Crohn's disease. Ulcerative colitis affects only the colon. The inflammation is maximal in the rectum and extends up the colon in a continuous manner without any "skip" areas of normal intestine. Crohn's disease can affect any area of the gastrointestinal tract including the small intestine and have areas of normal intestine between areas of diseased intestine, so-called "skip" areas.

Ulcerative colitis affects only the innermost lining of the colon, whereas Crohn's disease can affect the entire thickness of the bowel wall. Ulcerative colitis and Crohn's disease are different from spastic colon or irritable bowel syndrome, which is a motility disorder of the gastrointestinal tract. Irritable bowel syndrome bears no direct relationship to either ulcerative colitis or Crohn's disease.

How common is ulcerative colitis?

It is estimated that there are up to 1,000,000 Americans with either ulcerative colitis or Crohn's disease, roughly half of that number for each disease. Ulcerative colitis is predominantly a disease of the young with most cases generally beginning before age 30, although the disease can also occur in the sixth, seventh, and later decades of life. There is also a greater incidence of ulcerative colitis in Jews than non-Jews.

Is ulcerative colitis inherited?

We know that ulcerative colitis can tend to run in families. Studies have shown that as many as 20 percent of patients with ulcerative colitis will have a close relative with either ulcerative colitis or Crohn's disease. Most often the affected relative of the ulcerative colitis patient will also have ulcerative colitis. However, there does not appear to be a clear-cut pattern to this inheritance at this time. Researchers continue to seek specific genes involved in the cause of the diseases, but currently there is no way to predict which, if any, family members will develop ulcerative colitis or Crohn's disease.

What are the symptoms of ulcerative colitis?


The first symptom of ulcerative colitis is a progressive loosening of the stool. The stool is generally bloody and can be associated with crampy abdominal pain and severe urgency to have a bowel movement. The diarrhea may begin slowly or quite suddenly. In addition there may be skin lesions, pains in the joints and, in children, failure to grow properly.

How is ulcerative colitis diagnosed?

The diagnosis of ulcerative colitis is based on the clinical history as described above. Initially, ulcerative colitis needs to be differentiated from infectious causes of blooyd diarrhea. Bacterial and other infectious causes of diarrhea are investigated and eliminated from the diagnosis. Following this, the patient generally undergoes an evaluation of the colon either by sigmoidoscopy, which involves the passage of a flexible instrument into the rectum and lower colon to visualize the extent and degree of inflammation, or total colonoscopy, a similar exam that allows visualization of the entire colon. Using these techniques, the physician can determine the category of disease to be either ulcerative proctitis, limited colitis or pancolitis. The investigating physician may take samples of the colon lining, called biopsies and send these to a pathologist for further study. Ulcerative colitis can thus be distinguished from other diseases of the colon that cause rectal bleeding including Crohn's disease of the colon, diverticular disease, and cancer.

What medications are used to treat ulcerative colitis?

Currently, no medical cure for ulcerative colitis exists, but effective medical treatment can suppress the inflammatory process, permit healing of the colon, and relieve the symptoms of diarrhea, rectal bleeding, and abdominal pain. As such, the treatment of ulcerative colitis involves medicines that decrease the abnormal inflammation in the colon lining and thereby control the symptoms.

Three major classes of medication are used today to treat ulcerative colitis. They are:

Aminosalicylates: These medications include aspirin-like medications such as 5-aminosalicylic acid (5-ASA, mesalamine, olsalazine), and sulfasalazine. They can be given either orally or rectally and alter the body's ability to create an maintain inflammation. Thus, without inflammation, symptoms such as diarrhea, rectal bleeding and abdominal pain can be greatly diminished. These medications are effective in the treatment of mild to moderate episodes of ulcerative colitis and are also useful in preventing relapses of ulcerative colitis.

Corticosteroids: These medications include prednisone, methyprednisolone, and budesonide. They can be given orally, rectally, or intravenously. These medications are used for patients with moderate to severe disease. Corticosteroids also affect the body's ability to create and maintain inflammation.

Immunomodulatory medicines: These medications include azathioprine, 6-mercaptopurine (6-MP), and recently cyclosporine. As a group, they alter the body's immune cells from interacting with the inflammatory process. These medications are generally administered orally and are used in selected patients where aminosalicylates and corticosteroids have been either ineffective or incompletely effective. Azathioprine and 6-MP have been useful in reducing or eliminating the dependence on corticosteroids in some patients and may be useful in maintaining remission in selected refractory ulcerative colitis patients. However, these medications can take as long as three months to begin their beneficial effects.

What is the role of surgery in the treatment of ulcerative colitis?

In a small proportion of patients, medical therapy is not completely successful or complications arise. Under these circumstances, surgery may be considered. This surgery involves the removal of the entire colon and rectum with the creation of an ileostomy or external stoma. Differing from Crohn's disease, which can recur after surgery, ulcerative colitis is "cured" once the colon is removed. New surgical techniques have been developed to remove the colon, maintain bowel continuity and continence, and avoid an ileostomy. These techniques involve creating an internal pouch from the small bowel and attaching it to the anal sphincter muscle thereby maintaining bowel integrity and avoiding an external stoma or ileostomy. (Further information on surgery and ulcerative colitis can be found in CCFA's brochure on surgery.)

Is nutrition important in ulcerative colitis?

Good nutrition is essential in any chronic disease but especially in this illness, which is characterized by diarrhea and rectal bleeding that can rob the body of fluids, electrolytes, and nutrients. Maintaining proper nutrition is important in the medical management of ulcerative colitis.

While specific foods play no role in causing the disease, bland soft foods may cause less discomfort than spicy or high-fiber food when the disease is active. Except for restricting caffeine when severe diarrhea occurs, most gastroenterologists recommend a well-balanced diet for their patients.

Can emotional stress trigger attacks of ulcerative colitis?

Because body and mind are so closely interrelated, emotional stress can influence the symptoms of ulcerative colitis, or for that matter, any illness. Although acute emotional problems occasionally precede the onset of recurrence of ulcerative colitis, there is no causal relationship between stress and this disease.

It is much more likely that the emotional distress felt by people with ulcerative colitis is a reaction to the symptoms of the disease itself. Therefore, persons with ulcerative colitis should receive understanding and emotional support from their families and physicians. Through CCFA, local mutual support groups exist to help patients and their families cope with ulcerative colitis and Crohn's disease.

Is it possible to lead a normal life with ulcerative colitis?

While it is a serious chronic disease, ulcerative colitis is not a fatal illness. Most people with ulcerative colitis continue to lead normal, useful, and productive lives, even though they may need to take chronic medication and occasionally need to be hospitalized. Maintenance medication has been shown to decrease significantly exacerbations of ulcerative colitis. In between exacerbations, most patients feel well and are relatively free of symptoms.

What are the causes of ulcerative colitis?

Researchers do not know what causes this disease. They do not believe it is caused by emotional stress, or by food, or that it is transmitted directly from one person to another. Research has shown that in ulcerative colitis, the body's defenses are operating against some substances in the body, perhaps in the digestive tract, which the body recognizes as foreign. These foreign substances (antigens) may themselves cause the inflammation to begin or to stimulate the inflammatory process to continue without control.

The Crohn's & Colitis Foundation of America, Inc. (CCFA) is the only private national organization dedicated to finding the cure for the inflammatory bowel diseases such as ulcerative colitis and Crohn's disease. Funding from CCFA is in part responsible for exciting breakthroughs in the study of these diseases.

Research is currently underway to identify the genes associated with these diseases and to continue the understanding of how the immune system is activated to begin and perpetuate the disease process.

Local chapters of CCFA are actively involved in professional and patient education and support. For more information about CCFA:

Crohn's & Colitis Foundation of America, Inc.
National Headquarters
386 Park Avenue South
17th Floor
New York, NY 10016-8804
Telephone: 212-685-3440
1-800-932-2423
Fax: (212) 779-4098
E-mail: info@ccfa.org