”To get my life back” - interview study on restorative surgery decisions after colectomy in ulcerative colitis

Abstract Introduction The purpose of restorative surgery after colectomy is to improve quality of life. Still little is known about patient perspectives. We explored factors influencing UC patients’ choice between restorative procedures and stoma, and their experiences of associated healthcare. Method Semi-structured interviews were conducted with 21 ulcerative colitis patients subjected to subtotal colectomy and either had chosen restorative surgery or a permanent stoma. Participants were recruited from two hospitals within the CRUISE trial. Interviews were conducted in person or via Zoom and analysed using conventional content analysis as described by Elo and Kyngäs. Data collection continued until saturation was reached. Result Twenty-one participants (14 men, 7 women; median age 34) were interviewed 43 months post-colectomy. Analysis revealed three main categories and seven subcategories: (1) Decisive factors in surgical choice, (2) Shared decision-making, and (3) Factors healthcare can influence. Participants emphasized striving for normality and high quality of life, regardless of surgical choice. Informed decision-making and active involvement were central themes. Additionally, the attitude of healthcare professionals, continuity of care, and support structures significantly shaped patients’ perceptions and choices. The findings highlight the complex interplay of physical, psychosocial, and systemic factors influencing surgical decisions. Discussion This study provides valuable insights into the experiences of patients with ulcerative colitis undergoing colectomy. Adequate information, shared decision-making, and striving for normality were central to treatment satisfaction and QoL. A more patient-centred approach may enhance both physical and emotional outcomes by supporting informed, individualized choices in surgical decision-making.