A treatment not talked about - ostomy surgery

Nation's Business, Nov, 1993 by Marcia Mazur

In 1985, when Marvin Bush could have been enjoying life as the vice president's son, he was in nearly constant stomach pain, losing 60 pounds unintentionally and fighting the urge to go to the bathroom 10 to 20 times a day.

Bush was diagnosed with ulcerative colitis, a form of inflammatory bowel disease, and surgeons removed the damaged part of his intestine. They then created an ostomy, a surgical opening in the body.

While ostomies can be created in different areas of the body, by far the most common are those--such as Bush's--that are made in the abdominal wall to enable waste to pass through. Bush, a spokesman for the Crohn's & Colitis Foundation of America, says of his ostomy: "It has given me a pain-free existence."

He has a lot of company, although many people with ostomies--especially those who are public figures--do not disclose the fact. About 1 million people in the United States and Canada have abdominal ostomies, and an estimated 85,000 to 100,000 additional such surgeries are performed each year, according to the

United Ostomy Association.

As Dr. Jason Bodzin, director of the Inflammatory Bowel Disease Institute of Sinai Hospital, in Detroit, notes, "If you work with 200 people, it is likely that at least one of them has some kind of ostomy."

Abdominal ostomies fall into three categories: colostomies account for 65 percent; ileostomies, 20 percent; and urostomies, 15 percent. These ostomies carry waste from the large intestine, small intestine, and kidneys and ureters, respectively. Ostomies may be located almost anywhere on the abdomen. They are usually placed below the belt line and are undetectable under most clothing styles.

Although ostomy surgery is performed mainly on adults, thousands of infants and children receive abdominal ostomies every year for birth defects, bowel disease, or Hirschsprung's disease, a digestive ailment affecting about one in 5,000 live births.

Bodzin explains that an ostomy is an important treatment for cancer of the rectum or bladder. "An ostomy can be lifesaving and sometimes sanity-saving," he says. He recalls patients who "felt like knives were digging into them every time they went to the bathroom," until they had an ostomy.

"Ostomy surgery is curative for ulcerative colitis since [the disease] affects only the large intestine and the rectum," says Barbara Boyle, national executive director of the Crohn's & Colitis Foundation. "About 15 to 20 percent of people with ulcerative colitis require this operation. They fall into two groups: those whose illness cannot be controlled by medication, and a small number who have suffered from ulcerative colitis for many years and develop severe dysplasia, a change in cells that may predict cancer."

Boyle adds, however, that ostomy surgery is not curative for Crohn's disease, a form of inflammatory bowel disease can also strike the small intestine and other parts of the digestive tract.

Ostomy surgery may help when there is damage to digestive organs as a result of gunshots, stabbings, or car wrecks, or when prostate cancer has extended into the bladder. About 60 percent of abdominal ostomies are temporary, performed to relieve pressure on weakened organs or to allow diseased tissue to heal.

After ostomy surgery, the patient generally wears a pouch over the opening to collect body waste. "The change in ostomy care today is remarkable," says Paula Erwin-Toth, manager of enterostomal therapy (ostomy care) nursing at the Cleveland Clinic Foundation, in Ohio. Erwin-Toth was born with a bladder defect and has had an ostomy since she was 10 years old. "Ostomy pouches are made of lightweight plastic and are odor-proof," she says. "You can wear them in the shower, swimming, skiing, and even during sex."

Cynthia Sylvia, the enterostomal therapy nurse at Georgetown University Hospital, in Washington, D.C., adds: "Ostomies not only save lives, they bring an improved quality of life. And they are easier to care for than ever... Changing a pouch is simple and may be accomplished in just a few minutes."

In limited cases, physicians have even been able to create an internal pouch, but these techniques are still evolving.

Most people with ostomies return to their old routines, make only minimal changes in their diets, and enjoy a normal life span. Women who have ostomies as a result of inflammatory bowel disease are almost always able to conceive and bear children.

While ostomies "are still not cocktail party conversation," as Marvin Bush says, they no longer bear the social stigma they once did. More and more people are realizing that they bring invaluable relief and extended life to many thousands every year.

To find out more about ostomies, including local support groups, call the United Ostomy Association at 1-800-826-0826. Or call the American Cancer Society at 1-800-227-2345, the Crohn's & Colitis Foundation at 1-800-343-3637, or the American Pseudo-obstruction and Hirschsprung's Disease Society at (617) 395-4255.