Living with Stoma: Long-term Effects on Patients’ Quality of Life

Abstract

Introduction: Constructing end stoma is a recognized surgical option for management of anatomical anomalies and bowel dysfunctions. Yet, the long-term outcome for that creation is not known. For finding answer for the question on “the long term outcome for living with permanent stoma after five years of creation” we conducted this survey. Objective: Patients have right to know about the possible adverse that may result after surgical operations before giving consent to proceed. However, the long-term outcome after the first five years after construction of end stoma has not been examined. This study is aimed at identifying these possible adverse. Methods and patients: Members of the United Ostomy Association of America have been requested to complete online survey. Results: Seventy-eight respondents took part in this survey. The diagnosis was ulcerative colitis in 33, Crohn’s disease in 11, colonic perforations in 10, bowel tumors in 5, post-radiation severe bowel damage in 3, severe constipation in 4, and no diagnosis was given by further 4 participants. Two participants gave history of congenital malformations (Ehlers Danlos Syndrome and Imperforate anus respectively) Conditions, such as: intestinal obstruction, infected J pouch, diverticulitis, Familial Adenomatous Polyposis (FAP), Ovarian carcinoma and indeterminate colitis were diagnosed in one participant each. Out of the 33 ulcerative colitis patients, 25 identified their pre-operative abdominal pain as it was severe (75.8%) and this pain completely disappeared after surgical resection in 18 (72%). At analyzing the responses to question (3): (How do you feel in general?), it was found that those in the group with a longer elapsed time after diagnosis were more likely to feel better (p=0.042). But those in the older age group (>50years) were more likely to feel worse (p0.024); Patients in the older age group (>50 years) tended to experience more pain after creation (p=0.046); Patients with a longer elapsed time after diagnosis (>5 years) were more likely to say no at answering question (7): (Has your treatment changed the way you see yourself as a man/woman?) (p=0.039) and to say no at answering question (8) (Has your treatment caused any change in your sexual functioning (sex life)?) (p=0.007 ) as well; this group of patients were more likely to enjoy the things they used to before conducting the disease (p=0.025); there were no significant statistical differences were found between those who presented with an established stoma of less than five years old and those with stomas of more than five years old. Conclusion: Participants in the group with a longer elapsed time after diagnosis were more likely to feel better (p=0.042), to have better self-perception (p=0.039), to be more satisfied about their sexual performance (p=0.007), and to enjoy the things they used to before conducting the disease (p=0.025). However, the effect of self-perception on sexual act is significantly high in the two groups.