WebMD Medical News
Daniel J. DeNoon
Louise Chang, MD
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
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
As expected, patients reported bowel symptoms:
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."
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
Drossman and colleagues report their findings in the July issues of
Digestive Diseases and Sciences and the Journal of Clinical
SOURCES:Drossman, D.A. Digestive Diseases and Sciences; vol 54: pp
1532-1541.Drossman, D.A. Journal of Clinical Gastroenterology; vol 43: pp
541-550.Brandt, L.J. The American Journal of Gastroenterology; vol 104: pp
s1-s35.National Health Service: "Irritable Bowel Syndrome."Douglas A. Drossman, MD, professor of medicine and psychiatry and
co-director Center for Functional GI and Motility Disorders, University of
North Carolina, Chapel Hill.
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