The Patient’s Perspective of Irritable Bowel Syndrome

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Original Research

The Patient’s Perspective of Irritable Bowel Syndrome

J Fam Pract. 2001 June;50(6):521-525

References

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People with IBS have experiences similar to those with other chronic conditions of uncertain etiology and ambiguous diagnostic criteria, such as fibromyalgia, chronic pain, and chronic fatigue. A phenomenalogic study of 22 women with fibromyalgia described 2 higher-order concepts called vulnerability and maintaining forces.¹⁸ The vulnerability was described in terms of feelings of helplessness similar to our theme of frustration. The maintaining forces dealt with ambiguous interaction with health professionals that described lack of recognition of the physical nature of this condition and symptoms. Other forces referred to family support and isolation. Studying a group of people with chronic fatigue, Clements and colleagues¹⁹ also reported an overlap of physical symptoms and stress over which sufferers have no control. They reported that coping with their condition requires avoiding activities and resultant isolation. Studying patients with chronic nonmalignant pain, Kelly and coworkers²⁰ described feelings of loss and the need to be understood and accepted that are similar to themes from our focus groups. The subjects from all 3 studies also affirmed the value of support group membership.

Our patients with IBS made specific suggestions to improve their interactions with physicians. More education about the nature of this illness at the time of diagnosis would be helpful to the IBS sufferer. Educating physicians about how IBS affects the lives of those who are plagued by this syndrome is paramount. An empathic response is warranted from health care workers, especially since this illness is so socially isolating. Because participants were frustrated by the social isolation of this illness, referral to an IBS support group could help decrease this sense of isolation and help the participants learn new coping methods. Although these focus groups were not therapy sessions, it was clear that many participants valued the group interaction and gained information about how others coped with their IBS. Most participants believed that their episodes were triggered largely by stress. They had difficulty determining how their stress could be minimized and, in general, most showed little understanding about stress management. Physicians should help their patients with IBS develop rational strategies for managing stress.

Limitations

The members of these focus groups were volunteers and may not be representative of the whole population. They may represent the more severe cases of IBS, those least likely to have found relief or those most dissatisfied with their health care. However, they were willing to call a nurse and participate in a hospital or clinicbased discussion. In addition, all subjects were white, which may not be representative of the United States culture at large or represent ethnic differences in the manifestation of the disease or the subjects’ solutions to their illness.

Conclusions

People with IBS view their illness as a chronic condition that is episodic in nature and triggered mainly by stressful events. They feel little control over the initiation, intensity, and duration of their episodes of illness, leading them to a feeling of frustration. They perceive their medical care providers as unsympathetic and of limited help in dealing with their disease. The gap between the patient and the physician’s perception of the nature, severity, and consequences of IBS appears to lead to frustration, isolation, and missed opportunities to improve the patient’s quality of life.

Related resources

For patients:

IBS Self Help Group www.ibsgroup.org National IBS support group site. Offers information and chat rooms.
HeliosHealth—Link to irritable bowel syndrome www.helioshealth.com/digestive/ibs Brochures, news and discussions.

For physicians:

Advances in Irritable Bowel Syndrome www.conference-cast.com/ibs/ A lecture series that includes CME options.
American Gastroenterology Association—Irritable Bowel Syndrome www.gastro.org/public/ibs.html This site addresses the types of IBS seen by GI specialty groups and includes guidelines for diagnosis.
National Institute of Diabetes & Digestive & Kidney Diseases: Irritable Bowel Syndrome in Children http://www.niddk.nih.gov/health/digest/summary/ibskids/index.htm