The experience of ostomy surgery in young women with inflammatory bowel disease




Clark, Ashley

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Background: Inflammatory Bowel Disease (IBD) is a chronic, relapsing, autoimmune disease, affecting one in every 150 Canadians. Failure to induce remission of IBD with pharmacotherapy can necessitate surgical interventions, such as the creation of an ostomy. Ostomy surgery can help manage severe IBD and thus improve quality of life; however, individuals living with IBD report the possibility of ostomy surgery as a top concern, which can lead them to refuse or delay this decision until the disease becomes life threatening. Research Objective: The aim of this study is to understand what factors influence the decision to have ostomy surgery in young women with IBD, how the perception of the surgery compares to the reality of living with an ostomy, and the role healthcare professionals play in this decision. Methods: Nine participants who (1) identify as female, (2) are between the ages of 19 and 30, and (3) are currently living with an ostomy to treat IBD were recruited for this study. Additionally, seven healthcare professionals who work with IBD patients were recruited. Participants were invited for an individual, semi-structured interview. Findings: Young adult women living with an ostomy to treat their IBD reflected on their initial fears and concerns about undergoing surgery. Due to the severity of their illness, the majority of participants had requested surgery after having some time to adjust to the idea. This request, however, was often met with resistance or obstacles in the healthcare system. Healthcare professionals share mixed perceptions of ostomy surgery, with some viewing it as a last resort and others perceiving it as a treatment option. Once surgery had been performed, young adult women describe some challenges adjusting to life with an ostomy; but the majority report experiencing an overall improvement in quality of life. Conclusion: Understanding the perceptions that influence how young women perceive ostomies prior to versus after surgery will help identify the factors that influence the decision-making process for ostomy surgery, such as gender, age and stigma. Challenging current beliefs and assumptions may allow more supportive conversations between healthcare professionals and patients and provide insight on the actual lived experience of young women living with an ostomy.



Inflammatory Bowel Disease, Ostomy Surgery, Stigma, Decision-making, Chronic disease, Crohn's disease, ulcerative colitis, Surgery, Experience of illness