Ulcerative colitis.

What Is Ulcerative Colitis?

Almost everyone at times has symptoms of constipation, diarrhea, or abdominal pain. Many doctors say that upsets of the intestinal tract, or bowels, are among their patients' most common complaints. Most of these problems are not serious and will clear up with little or no treatment. In some cases, however, digestive diseases occur that don't go away easily. These are chronic, or long-lasting, diseases and must be treated by a skilled specialist.

Ulcerative colitis is a chronic disease in which the lining of the colon (large bowel) and rectum becomes inflamed (see figure 1). When this happens, the bowel tries to empty itself frequently, causing diarrhea. As cells on the surface of the lining of the colon die and slough off, ulcers (tiny open sores) form, causing pus, mucus, and bleeding.

What Are the Symptoms of Ulcerative Colitis?

Some patients with ulcerative colitis experience little more than frequent bowel movements that are softer and looser than normal. More common symptoms are abdominal cramps, straining to move the bowels, and bloody diarrhea. Patients may also suffer fatigue, weight loss, and loss of body fluids and nutrients. Severe bleeding can result in anemia. Sometimes patients also have skin ulcers, joint pain, inflammation of the eyes, or liver disorders. No one knows for sure why problems outside of the bowel are linked with colitis. Scientists think these complications may occur when the immune system triggers inflammation in other parts of the body. These disorders are usually mild and go away when the colitis is treated.

What Causes This Disease and Who Gets It?

The cause of ulcerative colitis is not known, and so far there is no cure, except through surgical removal of the colon. Scientists say the disease might be caused by infection or by sensitivity to certain foods or food products. These ideas have not been proven, however, and scientists are still searching for the answers.

An estimated 250,000 Americans have ulcerative colitis. It occurs most often in young people ages 15 to 40, although children and older people sometimes develop it too. It affects both sexes equally and appears to run in some families.

How Does the Doctor Diagnose Ulcerative Colitis?

If you have symptoms that suggest ulcerative colitis, the doctor will look inside your rectum and colon through a flexible tube (endoscope) that is inserted through the anus. This exam is not painful even if the bowel is inflamed. During the exam, the doctor may take a sample of tissue (biopsy) from the lining of the colon to look at under the microscope. Later, you also may receive an x-ray of the colon called a "barium enema" to determine the nature and extent of disease. This procedure. is done by putting a chalky solution (barium) into the colon. The barium shows up white on x-ray film, revealing growths and other abnormalities in the colon.

The doctor will give you a thorough physical exam. This exam will include tests of your blood to find out if you are anemic as a result of blood loss, or if there is an increased number of white blood cells, suggesting an inflammatory process in your body. Examination of a stool sample can tell the doctor if an infection, such as by amoebae or bacteria, is causing the symptoms.

If you have ulcerative colitis, you may need medical care for some time. Your doctor will also want to test you regularly to check on the condition.

How Serious Is This Disease?

About half of patients have only mild symptoms. Others suffer frequent fever, bloody diarrhea, nausea, and bad abdominal cramps. Only in rare cases, when complications occur, is the disease fatal. There may be remissions - periods when the symptoms go away - that last for months or even years. For the majority of patients, though, symptoms eventually return. This waxing and waning of the disease can make it hard for the doctor to tell when treatment has really helped.

What Is the Treatment?

Most patients are able to manage their disease most of the time. While there is no special diet for ulcerative colitis, patients may be able to control mild symptoms simply by avoiding foods that seem to upset their bowels. In some cases, the doctor may advise avoiding highly seasoned foods or milk sugar (lactose) for a while. When treatment is necessary, it must be tailored for each case, since what may help one patient may not help someone else. The patient also should be given needed emotional and psychological support.

Less than a quarter of patients with ulcerative colitis have symptoms severe enough to require hospitalization. In these cases, the doctor will try to correct malnutrition and to stop diarrhea and loss of blood, fluids and mineral salts. In order to accomplish this, the patient may need a special diet, feeding through a vein, medications, or, sometimes, surgery.

Patients with either mild or severe colitis are usually treated with the drug sulfasalazine. This drug can be used for as long as needed, and it can be used along with other drugs. Side effects such as nausea, vomiting, weight loss, heartburn, diarrhea, and headache occur in a small percentage of cases. Patients who do not do well on sulfasalazine often do very well on related drugs known as 5-ASA agents.

In some cases, patients with severe disease, or those who cannot take sulfasalazine-type drugs, are given adrenal steroids (drugs that help control inflammation and affect the immune system). All of these drugs can be used in oral, enema, or suppository forms. Other drugs may be given to relax the patient, or to relieve pain, diarrhea or infection.

The risk of colon cancer is much greater than normal in patients with widespread ulcerative colitis. The risk may be as high as 32 times the normal rate in patients whose entire colon is involved, especially if the colitis exists for many years. However, if only the rectum and lower (sigmoid) colon are involved, the risk of cancer is not higher than normal.

Sometimes precancerous changes occur in the cells lining the colon. These changes in the cells are called "dysplasia." If the doctor finds evidence of dysplasia through endoscopic exam and biopsy, it means the patient is more likely to develop cancer. Patients with dysplasia, or whose colitis affects the entire colon, should receive regular followup exams such as through colonoscopy (examination of the entire colon using a flexible endoscope) and biopsies.

About 20 percent of ulcerative colitis patients eventually have their colons removed due to bleeding, chronic debilitating illness, or the risk of cancer. This surgery (colectomy) may become necessary because the colitis is severe or because of the threat of cancer. Sometimes the doctor will recommend removing the colon when medical treatment has failed, or because the side effects of steroids, or other drugs, threaten the patient's health.

Removal of the colon cures the colitis. In the standard form of this operation, the entire colon and rectum are removed. A small opening is made in the front of the abdominal wall, and the tip of the lower small intestine (ileum) is brought to the skin's surface. This opening, called an "ileostomy," is about the size of a quarter or 50-cent piece. It is located in the right lower corner of the abdomen in the area of the beltline. A bag is worn over the opening to collect waste. The patient then empties the bag periodically. Most patients then go on to live normal, active lives.

In another type of operation, the surgeon creates a pouch out of the ileum inside the wall of the lower abdomen. The patient is then able to empty the pouch by inserting a tube through a small leak-proof opening in his side. This creates a kind of natural valve so the patient does not have to wear a bag on his side. (At least, not after the healing period from the operation. It is necessary to wear a bag for the first few months.)

Sometimes an operation can be performed that will avoid use of a bag. In one such operation, the outer muscles of the rectum are preserved. The surgeon is then able to attach the ileum inside the rectum, forming a pouch that holds the waste. This allows the patient to pass stools from the body in a normal manner, although the bowel movement may be more frequent and watery than usual.

The decision to have one kind of operation or another is made according to each patient's needs, expectations. and lifestyle. If you are ever faced with this decision, remember that it is important to get as much information as possible. Talk to your doctor, to nurses who work with patients who have had colon surgery (enterostomal therapists), and to other patients. Also, read pamphlets and books such as the ones from the National Foundation for Ileitis and Colitis before you decide.

The vast majority of patients with ulcerative colitis will never need to have such an operation. If it ever does become necessary, however, it is good to know that after surgery the colitis is cured and that most people go on to live normal, active lives.

Additional Reading

Bleeding in the Digestive Tract. 1986. This fact sheet discusses many common causes of bleeding in the digestive tract and related diagnostic procedures and treatment. Available from the National Digestive Diseases Information Clearinghouse, Box NDDIC, Bethesda, Maryland 20892.

Brandt, Lawrence J., and Penny Steiner-Grossman, editors. Treating IBD: A Patient's Guide to the Medical and Surgical Management of Inflammatory Bowel Disease. New York: Raven Press. 1989. This book, produced by the National Foundation for Ileitis and Colitis, discusses many aspects of treatment and living with inflammatory bowel disease. Available in libraries and from the Foundation.

Finkel, Asher J., and Jeffrey R.M. Kunz, editors. The American Medical Association Family Medical Guide. New York: Random House. 1987. General medical guide with sections on ulcerative colitis and other digestive diseases. Widely available in libraries and bookstores.

Hanauer, Stephen B., and Joseph B. Kirsner. Inflammatory Bowel Disease: A Guide for Patients and Their Families. New York: Raven Press. 1985. Available in libraries.

Inflammatory Bowel Disease. 1985. This fact sheet presents further information on ulcerative colitis and Crohn's disease, including diagnosis, treatment, and surgical procedures. Available from the National Digestive Diseases Information Clearinghouse, Box NDDIC, Bethesda, Maryland 20892.

Kirsner, J.B., and R.G. Shorter, editors. Inflammatory Bowel Disease. Third Edition. Philadelphia: Lea & Febiger. 1988. A medical book written in technical language, this text covers most aspects of ulcerative colitis in detail. It can be found in medical libraries or obtained through interlibrary loan services of most public libraries.

Rosenfeld, Isadore. Second Opinion: Your Comprehensive Guide to Treatment. New York: Bantam Books. 1988. General medical guide with sections on hemorrhoids and other digestive diseases. Available in many libraries.

Steiner, Penny, Peter A. Banks, and Daniel H. Present, editors. People Not Patients: A Source Book for Living with Inflammatory Bowel Disease. New York: National Foundation for Ileitis & Colitis. 1985. Available from the Foundation.

Resources

Ileitis and Colitis Educational Foundation

Central DuPage Hospital 

25 North Winfield Road

Winfield, Illinois 60190

[phone], Ext. 6493

International Association for Enterostomal Therapy

Suite 290

2081 Business Center Drive

Irvine, California 92715

[phone]

National Foundation for Ileitis and Colitis

444 Park Avenue South

New York, New York 10016

[phone]

United Ostomy Association

Suite 120

36 Executive Park

Irvine, Cafifornia 92714

[phone]

National Digestive Diseases Information Clearinghouse

Box NDDIC

Bethesda, Maryland 20892

[phone]

The National Digestive Diseases Information Clearinghouse is a service of the National Institute of Diabetes and Digestive and Kidney Diseases, part of the National Institutes of Health, under the U.S. Public Health Service. The clearinghouse was begun by Congress to focus a national effort on providing information to the public, patients and their families, and doctors and other health care workers. The clearinghouse works with organizations to educate people about digestive health and disease. The clearinghouse answers inquiries; develops, reviews, and sends out publications; and coordinates informational resources about digestive diseases.

Publications produced by the clearinghouse are reviewed carefully for scientific accuracy, appropriateness of content, and readability. Publications produced by sources other than the clearinghouse also are reviewed for scientific accuracy and are used, along with clearinghouse publications, to answer requests.

This publication is not copyrighted. The clearinghouse urges users of this fact sheet to duplicate and distribute as many copies as desired.

This fact sheet was prepared by Jim Fordham, M.A.

Office of Health Research Reports

National Institute of Diabetes and Digestive and Kidney Diseases

NIH Publication No. 90-1597 October 1989