'And don't say everything will be normal!': An international cross-sectional survey on the patients' unmet sexual wellbeing needs after ostomy formation.
Fourie S, Bornschein J, Norton C, Czuber-Dochan W • Colorectal disease : the official journal of the Association of Coloproctology of Great Britain and Ireland • 2025
Sexual wellbeing concerns following stoma formation are common and frequently unmet, with 68% of patients receiving no information about the impact of a stoma on their sexual life despite 89% expressing a desire for such information.
Key Findings
Results
The majority of ostomy patients reported ongoing sexual wellbeing concerns but had not received any relevant information from healthcare providers.
Over 61% of respondents reported ongoing concerns related to sexual wellbeing
68% had not received any information regarding the potential impact of a stoma on their sexual life
Despite the lack of information, 89% expressed a desire for such information
370 participants completed the anonymous survey between March 2023 and March 2024
Survey was disseminated via social media across English-speaking countries in collaboration with local ostomy and inflammatory bowel disease charities
Results
The primary sexual wellbeing concerns identified by ostomy patients related to body image, appliance-related issues, intimate relationship difficulties, and reduced self-confidence.
Body image was the top concern, reported by 32% of respondents
Appliance-related issues were reported by 29.7% of respondents
Difficulties in intimate relationships were reported by 28.1% of respondents
Reduced self-confidence was reported by 9.9% of respondents
Results
When information about sexual wellbeing was provided to ostomy patients, surgeons were the most frequently reported source.
Surgeons were identified as the most common source of sexual wellbeing information among those who did receive it
Over half of respondents preferred that all health professionals address sexual wellbeing as a routine part of care
Participants recommended a variety of information resources to meet their needs
Results
Age and time since stoma formation were significantly associated with the extent of sexual wellbeing concerns.
Both age and time since stoma formation were significantly associated with the extent of concerns (p < 0.05)
The study design was an international, web-based cross-sectional survey
The survey was anonymous and completed by 370 participants over a one-year period
Conclusions
The routine integration of sexual wellbeing discussions and accessible diverse resources was identified as essential to holistic, patient-centred stoma care.
The lack of information provision was identified as contributing to patient distress
Over half of respondents preferred that all health professionals address sexual wellbeing as a routine part of care
Stoma formation indications included inflammatory bowel disease, cancer, or trauma
The study was conducted in collaboration with local ostomy and inflammatory bowel disease charities across English-speaking countries
What This Means
This research surveyed 370 people who had undergone ostomy surgery (where part of the intestine is redirected through an opening in the abdomen) to understand how the surgery affected their sexual wellbeing and whether their concerns were being addressed by healthcare providers. The study found that more than 61% of participants had ongoing concerns about their sexual wellbeing after surgery, yet nearly 68% had never received any information from healthcare professionals about how having a stoma might affect their sex life. Despite this gap, 89% of participants said they wanted this kind of information. The most common concerns were about body image, issues with the ostomy appliance (the external pouch), difficulties in intimate relationships, and reduced self-confidence.
The research also found that when information was provided, it most often came from surgeons rather than other members of the care team. More than half of the participants felt that all healthcare professionals should routinely bring up sexual wellbeing as a standard part of ostomy care. Younger patients and those who had more recently had their surgery tended to have greater concerns, suggesting that the timing and targeting of support may be important.
This research suggests that there is a significant and largely unaddressed gap in the care provided to people living with a stoma. Sexual wellbeing is rarely discussed in clinical settings, yet it is clearly important to patients. Integrating routine conversations about sexual wellbeing, along with a range of accessible information resources, could meaningfully improve the overall quality of care and reduce distress for ostomy patients.
Fourie S, Bornschein J, Norton C, Czuber-Dochan W. (2025). 'And don't say everything will be normal!': An international cross-sectional survey on the patients' unmet sexual wellbeing needs after ostomy formation.. Colorectal disease : the official journal of the Association of Coloproctology of Great Britain and Ireland. https://doi.org/10.1111/codi.70264