Living with a parastomal bulge ‐ patients’ experiences of symptoms

Aims and objectives To investigate experienced symptoms of parastomal bulging in relation to an ileostomy or colostomy. Background Parastomal bulging is a common complication of stoma formation that can affect patients’ physical, psychological and social function. Symptom burdens reported by health professionals vary from asymptomatic to high symptom load; however, patients’ experiences of symptoms are lacking. Design and method A qualitative design with focus group interviews was chosen for data collection. Twenty patients participated in five semi‐structured interviews. Analysis was performed using a phenomenological‐hermeneutic approach. Findings The bulge caused different unfamiliar bodily sensations that interacted with patients’ everyday lives. Some but not all of these sensations were modifiable. As the bulge and the ostomy changed size and shape, patients had to adjust and readjust stoma care continuously. The physical change called for patients’ awareness and posed a threat to patients’ control of the ostomy and challenged stoma self‐care. The bulge caused a bodily asymmetry that deformed the patients’ bodies in a way that exceeded the perceived alteration already caused by the stoma. To cover the physical disfigurement, new clothing solutions, garment wear and creativity were essential in everyday life. Patients gradually adapted to the bulge over time. Easy access to professional help was crucial in order to find the best appliance and garment solution in relation to the bulge. Conclusions Various symptoms related to the parastomal bulge affected patients’ everyday lives in different ways and underpinned that an individualised approach is important when addressing patients’ problems and complaints. Research into nonsurgical treatments and patient perspectives is limited and highly warranted to improve clinical outcome. Relevance to clinical practice The ever‐changing bulge posed a threat to patients′ control of the ostomy and required specific care from the stoma therapist. Needs‐based access to counselling, advice and supplementary materials is important.