A Qualitative Exploration of the Lived Experiences of Patients Before and After Ileostomy Creation as a Result of Surgical Management for Crohn's Disease

Abstract

Patient experiences pre- and post-ileostomy creation as a result of severe Crohn's Disease are underresearched. A qualitative phenomenological design involving a purposeful sampling approach was used to capture the lived physical and psychosocial transition of patients with Crohn's Disease before and after ileostomy formation. Patients were recruited from the membership of the United Kingdom Ileostomy Association; inclusion criteria stipulated participants must speak English and have a diagnosis of Crohn's Disease and subsequent stoma formation. Ten (10) patients (6 women, 4 men, ranging in age from 34 to 83 years with Crohn's Disease and an ileostomy [mean time with stoma 18.3 years, range 3-36 years]) participated in indepth, semistructured interviews with questions on sociodemographic characteristics along with questions informed by the relevant literature regarding life before and after the ileostomy. All interviews were audiorecorded and transcribed verbatim. Interpretative phenomenological analysis was used to examine the data and identify and interpret themes. Participants were asked to comment on these themes to ensure they were a realistic interpretation of their experiences. Two (2) major themes emerged that embodied ileostomy formation: being controlled by Crohn's and transition to a new life with an ileostomy. Crohn's symptoms controlled daily activities such as work and socializing due, in part, to the need to be in close proximity to toilet facilities. The ileostomy facilitated a transition to a new life that allowed patients to re-engage with work and social activities. One minor theme emerged: memories of Crohn's. Participants said their memories of Crohn's affected life with an ileostomy. Where Crohn's controlled every aspect of people's lives pre-ileostomy formation, the creation of the ileostomy was a positive experience because it helped manage Crohn's symptoms. Memories of life pre-ileostomy may affect individuals' behavior post-ileostomy formation. In order to offer appropriate support, health professionals may need to be more aware that having Crohn's may affect patient behavior post-ileostomy.