N16 Exploring the factors that influence adjustment to and acceptance of an intestinal stoma for IBD: preliminary findings
Essex, R.(1);Burch, J.(2);Kemp, K.(3);Duncan, J.(4);Monks, C.(5);Dibley, L.(6)*;
(1)University of Greenwich, Institute for Lifecourse Development, London, United Kingdom;(2)St Mark's Hospital, Nurse Education, London, United Kingdom;(3)Manchester Royal Infirmary, Department of Gastroenterology, Manchester, United Kingdom;(4)Takeda UK, Clinical Education, London, United Kingdom;(5)University of Greenwich, School of Human Sciences- Institute for Lifecourse Development, London, United Kingdom;(6)University of Greenwich, School of Health Sciences- Institute for Lifecourse Development, London, United Kingdom; PRESTO PPI team
Adjusting to a stoma can be difficult. During development of a new Patient-Reported Outcome Measure, peoples’ perceptions of factors influencing acceptance of a stoma were explored.
Participants aged 18 years+ (confirmed IBD diagnosis, current or prior stoma) were recruited via Crohn’s & Colitis UK. Semi-structured interviews (online/phone January–April 2022) were audio-recorded, transcribed professionally, and analysed thematically.
Of 29 participants, 16 (55%) were female, 13 (45% male, or non-binary); mean age 53 years (range 22-77 years); with Crohn’s disease (n=11), ulcerative colitis (n=15) and IBD-unclassified (n=3). Mean time from diagnosis to first stoma: 9.3 years; 27 (93%) had a permanent stoma. Four early themes emerged:
Diagnosis and treatment: Clinical history before stoma surgery affected peoples’ responses afterwards. Delayed diagnosis, medication, and a declining health trajectory led to ‘no other option’ making it easier to consent to and accept stoma-forming surgery. Relief and control came once practical stoma care was mastered. Those who reported delayed diagnosis and/or not being believed about being seriously unwell, carried that experience forward with them.
Challenges of living with a stoma: No-one was ‘pleased’ that they had a stoma, but all (bar one) felt that life was better with, than without one. The stoma was harder to accept when not preceded by extended illness, or when temporary. Challenges included poor facilities for managing the stoma away from home and finding the right appliance to suit. The time needed per day to care for the stoma was burdensome. It took about two years to reach acceptance after stoma surgery.
Personality and coping: Participants viewed their stoma in the same way they addressed other challenges: there was no choice but to ‘get on with it’. Problem-solving skills had often been learnt in childhood. Recalling the stark health contrast between life without and with a stoma was helpful in accepting the stoma as part of their identity.
Social impacts and influences: Family, intimate partner, and social support were crucial. There is inadequate support for ostomates’ family members, especially children. Partners were accepting of the stoma, but women worried about body image and remaining attractive. People described anticipated and perceived stigma; whilst concerned that the stoma might be ‘obvious’ to others, they also endured negative comments because it was invisible.
Adjustment to living well with a stoma is influenced by personality, coping style, and social support, informed by prior personal, social and clinical experiences. Public ignorance about stomas and others' stigmatising attitudes often cause the most distress.