IBS: What It's Like
Irritable Bowel Syndrome Pain Bad, Stigma Worse
WebMD News Archive
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
Drossman and colleagues report their findings in the July issues of
Digestive Diseases and Sciences and the Journal of Clinical