Stomas and IBD

What is this research looking at? 

Around 2000 people in the UK with Inflammatory Bowel Disease (IBD) undergo surgery each year, resulting in either temporary or permanent stoma formation. Evidence shows that the idea of a stoma is extremely troublesome to people with IBD, but does not explain why. Although Ulcerative Colitis (UC) patients’ quality of life 30 years after ileostomy formation has been reported as being good, there is little evidence on what it is really like to live with a stoma for IBD or why people are so fearful of and averse to stoma-forming surgery, such that they are willing to trade life expectancy to avoid it.  Online stoma forums and advice resources tend to explain surgical and self-management procedures and practicalities and provide moral support post-operatively, but do not address emotional anticipation of a stoma. This study aims to improve informed decision-making regarding stoma formation for people with IBD by learning from patient and clinician experience.   

What do researchers think this could this mean for people with IBD?  

The researchers found that before surgery, patients were concerned about visibility, leakage and smell, and worried about the impact on relationships and social and sporting activities. In decision making about stomas, some clinicians advocated early discussion of surgery and patients who had a stoma also felt that early discussion would have been beneficial in making informed decisions.  In general, stoma patients found their long-term outcomes were much better than expected, with preoperative concerns proving to be largely unfounded. Additionally, patients’ ability to accept a stoma were very much influenced by the quality of information, preoperative preparation and clinical support. It is hoped that this research will inform patient choice and improve patient information for people considering stoma surgery.  Provision of information is crucial and timing of the provision should be taken into account by clinicians.  Patients must be made aware of the given the options available to them.