Irritable Bowel Patients Report Frustration, IsolationA DGReview of :"The Patient's Perspective of Irritable Bowel Syndrome"Journal of Family Practice06/20/2001By Elda HauschildtPatients with irritable bowel syndrome (IBS) suggest that the chronic condition results in feelings of frustration and isolation. They do not perceive that doctors provide them with adequate medical information or support.North American researchers spoke with adult volunteers, diagnosed with IBS, in a qualitative study based on focus groups. Their objective was to find out how the condition affects patients' lives and their interactions with health services.Prevalence of IBS is estimated to be from 9 to 22 percent of the general United States population, say investigators from Rochester, Minnesota and Pennsylvania. Many people with IBS do not seek medical help. Those who do, often discontinue recommended medical treatment, despite continuing symptoms."As a diagnosis of exclusion with no defined physiologic basis, IBS is not well understood by doctors or patients and is often not considered significant by the medical community," investigators comment.Seven focus groups each included five to 10 IBS volunteers with a total of 51 participants taking part. They ranged in age from 16 to 72 years. Most (43) were women and most were primary care patients.Groups met for an hour of discussion between September and December 1999. The discussions were audiotaped. Nurse co-facilitators led discussions in five areas: symptoms and episodes, triggers and duration of episodes, treatments, lifestyle changes and health-care system experiences."IBS symptoms began at various ages, though most subjects were in their mid-teens to mid-30s when they sought help for the first time," investigators report. "Some were able to relate symptoms going back to childhood."Participants described IBS as chronic, affecting their lives on a daily basis. "Although the symptoms were usually episodic, occurring weekly to monthly and lasting hours to a few days, anticipation of the next episode affected the person between episodes."Patients noted that both stress and foods are unpredictable triggers of IBS episodes. They "universally believed that they had little control over stressful occasions" and that foods that had no adverse effect one time could later trigger severe symptoms.Researchers also point out that IBS patients self-regulate treatment. Prophylactic use of anti-diarrheal medications before work or social events was one example given. Many participants said they had to make significant lifestyle changes because of IBS. They commented that the condition decreased their work productivity and caused them to miss work as often as once a month. Most said they sought medical help in the diagnostic stages and then dealt with symptoms on their own. "A sense of frustration with the medical community's lack of empathic response, a lack of any helpful remedy and a feeling of being taken lightly was commonplace."IBS patients also display a sense of great frustration with the lack of control they perceive they have over the illness and their daily lives, the researchers concluded.