Patients' experiences of living with irritable bowel syndrome

Abstract

Aim: This paper is a report of a study conducted to describe people's experiences, and meanings of these, while living with irritable bowel syndrome.

Background: Irritable bowel syndrome is characterized by abdominal pain, diarrhoea and/or constipation, distension and bloating. Such symptoms are stigmatized in western societies. Patients may experience negative attitudes from healthcare personnel, and they can feel helpless and frustrated trying to control symptoms.

Method: A qualitative, hermeneutic approach was used. Open-ended interviews were conducted during 2005-2006 with 13 patients currently diagnosed with irritable bowel syndrome. The interview setting was a rural healthcare centre or the person's home. An interpretive analysis of the data was performed.

Findings: Four interwoven themes were identified in the data: Living with unpredictability, represented by the subthemes 'not being in control', 'not being able to trust' and 'invasion of privacy'; preserving dignity, described by 'living with sacrifice', 'taking command' and 'fulfilling obligations'; 'reconciling struggle'; and 'living with comorbidity'.

Conclusion: The unpredictability and taboos of irritable bowel syndrome made these people suffer, feel constrained and dependent. Dignity was preserved both by sacrifices and taking command. Healthcare personnel should allow patients to talk about their suffering and discomfort to decrease their experience of suffering. Our study contributes to a more nuanced understanding of life with this unpleasant companion, the suffering it creates and the threats to dignity and health.