Understanding the Lived Experience After Colectomy and Ileal Pouch-Anal Anastomosis for Ulcerative Colitis: A Qualitative Study.

Background: The patient experience after ileal pouch-anal anastomosis (IPAA) for ulcerative colitis (UC) remains poorly defined, resulting in heterogeneity in clinical assessments and research. We performed a qualitative study to better understand the experience of patients after IPAA for UC, with a focus on the symptoms experienced by patients and the resultant effects on quality of life (QoL). Methods: We conducted semi-structured focus groups among patients who had undergone IPAA for UC. We invited patients with a variety of pouch-related conditions, including patients reporting normal pouch function and those with diagnosed inflammatory conditions of the pouch. We included questions on patients' experiences and symptoms after IPAA based on 4 thematic areas identified by a previously performed systematic review: bowel symptoms, activities, general issues and quality of life, and psychosocial. Results: We interviewed 15 individuals over the course of 4 focus groups. Participants described the significant impact that bowel symptoms after IPAA had on other activities including work and daily life, and their subsequent relation to QoL themes. Participants noted symptoms of frequency, urgency, and incontinence after IPAA, and many shared how these symptoms required them to change their lifestyle, particularly by altering their daily schedule or changing their diet. Nevertheless, most participants reported QoL improvement after IPAA. Conclusions: In this qualitative study evaluating the experience of patients after IPAA, multiple bowel-related symptoms impact other areas of life and overall QoL. Patients undergoing IPAA for UC represent a unique patient population, and thus patient-centered outcome measures should be designed to standardize their assessment.