FRIDAY, April 9, 2004 (HealthDayNews) -- Irritable bowel syndrome is a horribly uncomfortable disease, made worse by its embarrassing symptoms -- chronic constipation or diarrhea with gas, bloating and debilitating stomach cramps.
Just ask Janet Krause. The 54-year-old Torrance, Calif., woman wonders every workday if she'll make the hour-long commute to her job as a billing manager for a doctor's office before the pain and the need for relief begin.
"If I ate breakfast before I left for work, I would be cramping before I got there," said Krause, who estimates she has suffered from IBS for about 15 to 20 years, although it has gotten steadily worse during the past decade.
Irritable bowel syndrome remains something of a quiet mystery, despite the fact that doctors believe it affects an estimated 30 million people in the United States, 60 percent to 65 percent of whom are female.
Less than one half of sufferers ever seek advice from a doctor. On average, it takes more than three years to have irritable bowel syndrome properly diagnosed, and patients will see up to three doctors before the correct diagnosis takes place, according to the International Foundation for Functional Gastrointestinal Disorders.
Among health professionals, there's still no clear consensus on what causes the disorder, although a couple of successful medications have aided in its treatment.
That's why the foundation has designated April as Irritable Bowel Syndrome Awareness Month, to promote discussion of the disease's diagnosis and treatment as well as the way it affects people's lives.
"The disorder has been around for a long time, but it's been one that people haven't been willing to talk much about," said Dr. G. Richard Locke III, a gastroenterologist with the Mayo Clinic. "People don't like talking about their bowels."
People afflicted with IBS suffer from spasms in the colon, a 6-foot-long tube that connects the lower intestines to the rectum. That's the place where the waste matter from digestion forms into stool, and movements of the colon push the waste along until it's ready to exit the body.
The spasms are caused by a disturbance in the interaction between the gut, the brain and the autonomic nervous system that regulates movement of the colon and bowels. The nerve endings in the lining of the bowel become unusually sensitive, while the nerves that control the muscles of the gut become unusually active, Locke said.
"The bowels can be too slow," Locke said. "The bowels can be too fast. In addition, there's often bloating, mucus and the feeling you aren't finished even after you go."
The condition doesn't cause permanent harm to the intestines, and will not result in intestinal bleeding or a life-threatening disease such as cancer.
Still, it's a very tough cross to bear, doctors say.
No one is sure what causes the syndrome. Doctors initially thought it was triggered by emotional upset, an extreme form of "nervous stomach." They no longer believe that to be the case, although stress has been found to exacerbate or unleash certain IBS symptoms.
Other researchers have focused on diet, genetics or infection as the reason behind IBS.
"We've known for a long time that some people will develop IBS after an infection, and we're slowly understanding why," Locke said. That line of research is focusing on whether the inflammation that accompanies infection affects the way the nerves that work the gut do their job, or whether a low-grade inflammation remains in the gut following the infection.
"The infection itself is gone, but it turns something on or in some way changes the body and that persists," Locke said.
Because so little is known about IBS, and because its symptoms are varied and unpredictable, doctors and patients struggle to find successful treatments.
"In general, IBS can be challenging to treat," said Dr. Lin Chang of the University of California, Los Angeles's Division of Digestive Diseases. "There are medications that can treat a specific symptom, but not many medications that can treat IBS overall."
Some people alter their diet to help relieve symptoms, while others use over-the-counter medications to combat constipation, diarrhea and gas, Chang said. Psychological counseling, relaxation training and hypnosis also have proven effective as non-medicinal treatments.
Over the last few years, a couple of broad-spectrum medications have been approved for use in treating irritable bowel syndrome as a whole. Tegaserod, also known by the trade name Zelnorm, is approved for use by women with irritable bowel syndrome accompanied by constipation. Alosetron, on the market under the name Lotronex, is used to treat women with IBS with diarrhea.
"They both work by changing the way serotonin works in the gut and brain," Locke said. "By activating one type of receptor, you make the bowels move better. By blocking another type of receptor, you slow down the GI tract."
Lotronex has had a checkered history. It was taken off the market in November 2000, 10 months after the U.S. Food and Drug Administration approved its use, because it was found to cause severe constipation that required surgery. Several deaths were reported.
However, the drug had proven so successful in treating severe cases that thousands of patients petitioned the FDA to place it back on the market. The agency relented in June 2002, but it is only available through doctors and only for people with severe diarrhea who haven't responded to other treatments.
Krause currently takes Lotronex, which has helped her more than any other medication. But because of the potential side effects, she has to check in with her doctor often.
The worst part about IBS is that Krause can no longer eat the foods she really enjoys, like vegetables or fruits.
"I do better when I go and eat at McDonald's," she said. "I can maybe have a salad once or twice a week."
But she feels best when she hasn't eaten anything at all, and sometimes goes long periods during the day without taking any food.
"If my stomach's empty, I feel great," Krause said. "But when I eat, I get gas and feel terrible."
More information
To learn more about irritable bowel syndrome, visit the National Digestive Diseases Information Clearinghouse or the Irritable Bowel Syndrome Association.
