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

24 March 2022
18 min read
Volume 31 · Issue 6

Abstract

Background:

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.

Aims:

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.

Methods:

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.

Findings:

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.

Conclusions:

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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