‘And don't say everything will be normal!’: An international cross‐sectional survey on the patients’ unmet sexual wellbeing needs after ostomy formation

Journal article

Background: Stoma formation for inflammatory bowel disease, cancer or trauma can adversely affect sexual function and overall sexual wellbeing. There is a recognised unmet need to address patients' concerns within clinical practice. This study aimed to identify patient‐reported sexual wellbeing concerns, explore experiences of discussing these issues within clinical settings and determine patients' priorities regarding their sexual wellbeing needs. Methods: An international, web‐based cross‐sectional survey was disseminated via social media across English‐speaking countries, in collaboration with local ostomy and inflammatory bowel disease charities. Results: A total of 370 participants completed the anonymous survey between March 2023 and March 2024. Over 61% reported ongoing concerns related to sexual wellbeing, while 68% had not received any information regarding the potential impact of a stoma on their sexual life. Despite this, 89% expressed a desire for such information. When information was provided, surgeons were the most frequently reported source. Primary concerns identified were body image (32%), appliance‐related issues (29.7%), difficulties in intimate relationships (28.1%) and reduced self‐confidence (9.9%). Over half of respondents preferred that all health professionals address sexual wellbeing as a routine part of care. Participants also recommended a variety of information resources. Age and time since stoma formation were significantly associated with the extent of concerns (p < 0.05). Conclusions: Sexual wellbeing concerns following stoma formation are common and frequently unmet. The lack of information provision contributes to patient distress. The routine integration of sexual wellbeing discussions, supported by accessible and diverse resources, is essential to delivering holistic, patient‐centred stoma care.

Authors: Simona, F; Jan, B; Christine, N; Wladyslawa, C

• Publication status: Published
• Peer review status: Peer reviewed
• Publisher: Wiley
• Journal: Colorectal Disease
• Volume: 27
• Issue: 10
• Article number: e70264
• Publication date: 2025-10-06
• Acceptance date: 2025-09-21
• DOI: 10.1111/codi.70264
• EISSN: 1463-1318
• ISSN: 1462-8910
• Language: English
• Keywords: stoma formation; sexual wellbeing; survey