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Gaining consensus: the challenges of living with a stoma and the impact of stoma leakage

24 March 2022
Volume 31 · Issue 6



People with a stoma face many unique challenges. Leakage is a significant one but is not sufficiently discussed within the wider area of health and social care.


This study aimed to articulate and achieve consensus on the problems experienced by people with a stoma, particularly leakage, in the hope of encouraging conversations among patients, clinicians and policymakers on how to solve them.


Output from a modified Delphi panel, consisting of patient groups, was used to create a set of calls to action, with a particular focus on the issue of leakage.


Leakage has a large impact on daily life and can cause both physical and mental health difficulties. Peer support and specialist care can be offer considerable benefits in dealing with these.


There are significant unmet needs for equitable access to specialist stoma care and peer support, as well as information provision for non-specialist healthcare providers. The calls to action should be implemented.

It is estimated that between 176 000 and 205 000 people in the UK live with a stoma, and around 21000 people have stoma surgery each year (Colostomy UK (CUK), 2021; NHS Digital, 2021). Surgery is performed to treat a range of conditions, including but not limited to bowel and bladder cancer and inflammatory bowel disease. While the formation of a stoma is a life-saving procedure for many, it poses considerable challenges (Bladder and Bowel UK, 2020).

Leakage is a predominant problem and is a constant worry for many people with a stoma (Claessens et al, 2015; Porrett et al, 2021). It commonly leads to peristomal skin complications—incidence has been reported to be as high as 75% (Salvadalena et al, 2020)—may be associated with redness, irritation and pain, and can affect the adhesion of a stoma appliance. The possibility of unpleasant odour and noise means people with a stoma may face additional unique social anxieties following their surgery, with intimate relationships and body image particularly affected (Cardoso et al, 2015). In some cases, post-surgery anxiety can lead to a person isolating themselves from social situations (Claessens et al, 2015).

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