Abstract
This article describes a novel qualitative study exploring the lived experience of participants having undergone ileoanal pouch failure, on a background of ulcerative colitis (UC). It focuses on the impact of living with indefinite diversion of the pouch and a permanent end ileostomy. Six participants were interviewed with an aim to establish their experience of pouch failure and the support they required. Five pertinent themes emerged that suggested participants did not expect pouch failure and were unprepared for the regression towards UC. Some participants recommenced drug therapy, wore pads to manage leakage from the diverted pouch, avoided certain social settings or manipulated diet and lifestyle in order to gain an acceptable quality of life with a permanent ileostomy. Pouch failure potentially presents adverse effects on patients' quality of life, but currently there is a deficit in support and resources available in order to provide acceptable outcomes for patients experiencing pouch failure.
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