How patients with long-term experience of living with irritable bowel syndrome manage illness in daily life: a qualitative study

Eur J Gastroenterol Hepatol. 2013 Dec;25(12):1478-83. doi: 10.1097/MEG.0b013e328365abd3.


Objectives: Irritable bowel syndrome (IBS) is a chronic, disabling and functional gastrointestinal disorder. Effective treatments are lacking. Self-care and coping with symptoms are considered important but little is known about what patients with IBS actually do to manage their illness. The aim of this study was to explore how patients with long-term experience of living with IBS perceive their situation and manage illness in daily life.

Patients and methods: The study adopted a qualitative approach - an interpretative phenomenological analysis. Twenty patients with IBS (16 women) with a mean age of 46 (27-74) years were interviewed. The mean IBS duration was 24 (7-65) years.

Results: Two themes emerged from the analysis: Healed but not cured and Take control of daily life. Healed but not cured is about mastering IBS. Even though the patients feel there has been an improvement, their abdomen is constantly present. The patients live with intermittent interaction between well-being and illness and construct explanations for the cause of the IBS symptoms. Taking control of daily life is about the activities the patients perform to master IBS symptoms: self-centredness, disciplined self-care, control over daily routines and finding social support.

Conclusion: These results suggest that the negative impact of IBS on daily life can be reduced. Over time, the patients had found effective strategies for symptom improvement, although this is a long-term learning process. The healthcare system could be more effective in supporting patients to find solutions to problems caused by IBS that are consistent with person-centred care and could be adopted as part of different supportive/educational interventions.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Activities of Daily Living
  • Adaptation, Psychological
  • Adult
  • Aged
  • Attitude to Health
  • Female
  • Humans
  • Internal-External Control
  • Irritable Bowel Syndrome / etiology
  • Irritable Bowel Syndrome / psychology*
  • Irritable Bowel Syndrome / rehabilitation*
  • Male
  • Middle Aged
  • Psychometrics
  • Qualitative Research
  • Self Care / methods*
  • Self Care / psychology
  • Self Concept
  • Social Support
  • Sweden