The lived experience of having an ileoanal reservoir: A phenomenologic study

Abstract

Objective: Ileoanal reservoir (IAR) surgery or ileal pouch anal anastomosis is a relatively new surgical technique for people with ulcerative colitis or familial adenomatous polyposis. Little attention has been given to the experiences of people undergoing the procedure. The purpose of this qualitative study was to understand the lived experience of persons who have had construction of an IAR. Design: The study was grounded in the phenomenologic approach of Van Manen to capture the lived experience of having an IAR as perceived by those persons in their everyday world. Setting and Subjects: A purposive sample of 10 individuals with direct and personal knowledge of the experience were interviewed in detail. Subjects were recruited by contact with an IAR support group and a local WOCN group. All interviews were conducted in a private setting in a health care facility, school, or the participant's home. Methods: Data collection involved face-to-face interviews lasting from 1 to 2 hours. Interviews were audiotaped and transcribed. Main Outcome Measures: Demographic data from the interviews were tabulated. Analyses of transcripts revealed 10 essential thematic categories with multiple theme clusters of the IAR experience related to lived body, time, space, and relationships. Analyses were completed by the researcher and a faculty mentor. Results: The particular thematic categories that evolved from the data were (1) restricted life world, (2) living with uncertainty and fear, (3) seeking control, (4) vicious cycles: crisis and normalcy, (5) seeking and giving support, (6) alienation from the body, (7) living with bodily alterations, (8) the gift of time, (9) role and relationship changes, and (10) the end of the tunnel but relative results. All 10 theme categories were correlated with a literature review and other sources. Conclusion: The study provides a portrait of courage and survival for individuals experiencing major surgical interventions and bodily invasion associated with IAR after years of living with UC. Implications for nurses and health care personnel and questions for future research are presented.