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N12 Microscopic colitis: struggling with an invisible, disabling disease

K. Pihl Lesnovska*1, A. Munch1, H. Hjortswang1

1University Hospital of Linköping, Gastroenterology and Hepatology, Linköping, Sweden

Background

Microscopic colitis causes chronic or recurrent non-bloody, watery diarrhoea, which is associated with urgency, faecal incontinence and abdominal pain. The patient’s health-related quality of life is often impaired. In microscopic colitis health-related quality of life has been studied using questionnaires originally constructed and validated for patients with inflammatory bowel disease. The aim of this study was to explore the impact of microscopic colitis on everyday life.

Methods

Inductive, qualitative, semi-structured interviews were performed with 15 persons suffering from Microscopic colitis. Participants were selected from an outpatient clinic in the south east of Sweden. The inclusion criteria were designed to ensure that the sample reflected the patient population and provided maximum variation in terms of age, sex, type of MC (CC or LC), disease activity and duration. All interviews were conducted by the first author in a room at the hospital. The interviews lasted for an average of 28 min (range 15–50 min) and were based on a semi-structured interview guide. In order to gain a deeper understanding of the phenomenon, probing questions were posed to encourage the participants to elaborate on and describe the impact of the disease on their everyday life. Content analysis was used to explore the impact of the condition on everyday life.

Results

The qualitative inductive content analysis generated one theme and five subthemes. The theme was ‘Struggling with an invisible, disabling disease’. The five subthemes were: Physical experience of bowel function; Associated symptoms affecting quality of life; Impact of the disease on everyday life; disease-related worry; and strategies for managing everyday life. The overall theme that emerged revealed that MC remains a histological disease that appears invisible both when patients seek healthcare to obtain a diagnosis and when experiencing a lack of understanding from their social network. Several participants expressed that the time from seeking help from primary care to diagnosis was long, as no blood or faecal tests and no examinations reflected their own perception of the symptom burden. They also described struggling to make their next-of-kin and social network believe that they were ill when healthcare providers had difficulties explaining their complaints.

Conclusion

The semi-structured interviews with persons suffering from microscopic colitis provided a wide spectrum of answers to the question of how everyday life is affected. Microscopic colitis can be a disabling life experience and patients develop different strategies to adapt, cope and regain their previous performance level.