The elephant in the room: the impact of bowel dysfunction on people with multiple sclerosis

Author(s): D. McClurg, K. Beattie , A. Lowe-Strong & S. Hagen - Pages: 13–21

Abstract

The aim of this study was to investigate the relationship between constipation and the quality of life (QoL) of people with multiple sclerosis (MS). Using a phenomenological approach, in-depth interviews were undertaken with 12 people who had a diagnosis of MS and also suffered from constipation. Themes were derived from inductive analysis of verbatim transcripts of the interviews. The participants framed their observations regarding the impact of constipation with one core theme: spoiled normal identity, brought about by the reactions of others, culminating in a sense of social stigma. The main strands of the interviews were the associated issues of aesthetics, decreased self-esteem and loss of control. It was also evident that the impact of this condition on everyday life was significant. This was confounded by embarrassment, and the reluctance of patients and clinicians to talk about the problems pertaining to a sense of isolation. Furthermore, inconsistent advice and information often led to self-management by trial and error, which sometimes had disastrous consequences. From these interviews, it would appear that constipation affects the QoL of some people with MS, restricting their activities, and making them feel isolated and out of control. Multidisciplinary team input is vital for the effective management of clients with MS and bowel dysfunction, and there is a specific need for the symptom of constipation to be more openly discussed and strategies for relief identified. Further research into the impact and treatment of all bowel problems in people with MS is required.

Keywords: bowel dysfunction, constipation, multiple sclerosis, quality of life, stigma.