IBS: What It's Like
Irritable Bowel Syndrome Pain Bad, Stigma Worse
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.