Aug. 20, 2009 -- People with IBS suffer pain and greatly reduced quality of life -- but what hurts most is when family, friends, and doctors don't think their suffering is legitimate.
Irritable bowel syndrome greatly disrupts the lives of people who suffer from it. But unlike other gut diseases, such as inflammatory bowel disease, IBS has no known physical cause. And it presents in different ways: with unpredictable diarrhea, with extreme constipation, or both.
"IBS is a disorder with no structural abnormality like ulcers or cancers so it takes on a lower level of legitimacy for doctors and patients," IBS expert Douglas A. Drossman, MD, tells WebMD. "People say it isn't real, and patients say, 'Well then, I must be crazy.'"
That would be a lot of crazy people. An estimated 7% of the U.S. population has IBS. In the U.K., the estimate is even higher: about 10% to 20% of the population.
Lacking a yardstick, doctors have had a hard time judging IBS severity. The FDA recently ruled that new IBS treatments must be evaluated in terms of whether patients feel better. But what do patients say IBS is like?
"Nobody was looking at how patients characterize their illness," says Drossman, co-director of the University of North Carolina Center for Functional GI and Motility Disorders.
So Drossman and colleagues designed two studies. In one, the researchers enrolled 32 IBS patients in small focus groups. In the other, Drossman's team performed an international survey of nearly 2,000 people with an IBS diagnosis.
As expected, patients reported bowel symptoms:
- 80% experienced pain.
- Three-fourths of patients reported bowel difficulties.
- Half of the patients with diarrhea-predominant or mixed-type IBS reported fecal incontinence.
- Nausea, muscle pains, and, for those with diarrhea, gas, mucus in stool, and belching were common.
- More than two-thirds of patients reported bloating.
But just as common -- and, as the focus group members reported, at least as bothersome -- was the way IBS affected their daily function, their thoughts, and their feelings.
"The impairment in their life was far greater than you would imagine -- their own sense of degradation and the stigma they experience from others," Drossman says. "Even when they are not symptomatic, the condition still pervades their life and how they think and feel about it."
IBS: Uncertainty, Loss Add to Suffering
Stigma from friends, family, and doctors was a dominant theme, Drossman found. Patients often said that nobody understood what they were going through or truly believed they were ill. This created as great a barrier to daily function as the disease itself.
Another major theme was uncertainty, a sense of having no control over the condition. Most patients end up greatly restricting their daily activities, which results in a sense of loss: loss of freedom, loss of spontaneity, and loss of social contacts.
All of this leads to emotional responses: fear, shame, embarrassment, and degradation. A big issue, Drossman says, is that patients refrain from sex because of fear of incontinence or other symptoms -- thus straining their relationship with their spouse.
To get a measure of the extent of this suffering, the Drossman team's survey asked IBS patients what they'd give to be free of their symptoms. On average, they said they'd give up a fourth of their remaining years of life.
There isn't a cure for IBS. But treatment can be effective. Drossman says that 90% of the treatment is helping people understand their condition and come to feel they can manage it.
"The feelings of fear, distress, and frustration may be generic and affect all people with IBS, but how people deal with those feelings varies," he says. "In addition to all the disease management aspects, we focus on understanding where the patients are, validating their experience, and helping them move forward. It is a focus on the person with the condition, and not on an organ."
Drossman and colleagues report their findings in the July issues of Digestive Diseases and Sciences and the Journal of Clinical Gastroenterology.