Experience of living with an enterocutaneous fistula

Aims and objectives The purpose of this study was to describe patients’ experiences of living with an enterocutaneous fistula. Background An enterocutaneous fistula is a complex and serious illness that usually occurs as a complication from surgery or spontaneously as a result of an underlying disease. The illness is demanding both physically and mentally and causes substantial medical and nursing problems for the afflicted individual. Design A descriptive design with a qualitative approach. Methods In‐depth interviews were performed with nine participants who had experiences of living with an enterocutaneous fistula. The analysis was conducted using descriptive phenomenology according to Giorgi. Results The essence of this study was that living with an enterocutaneous fistula is about handling an illness that causes several limitations in daily life and the following five themes emerged from the data: restrictions in daily life, approaches to illness, emotions, dependence and need of support. A constant fear of leakage from the fistula appliance, being dependent on intravenous fluids and being dependent on health care professionals caused isolation and social restriction. Conclusions The participants had many strategies for handling their illness. By being well trained, engaged and having a positive and understanding approach, health care professionals can encourage hope, motivation and self‐care. This can lead to decreased dependence and help the patient to better handle their illness. Relevance to clinical practice The competence of health care professionals is essential in the care of patients with an enterocutaneous fistula.