N17 ‘The poo and sex discussion is tough to untangle’: An international qualitative study on sexual well-being experiences of people living with IBD and a stoma
Authors: Fourie S , Czuber-Dochan W , Johnston L 
Published: January 2025

Background

Previous studies have highlighted that individuals with inflammatory bowel disease (IBD) often experience concerns related to sexual well-being (SWB). For those with IBD who have undergone stoma formation, there is an overall improvement in quality of life, but the initial period is marked by significant distress, largely due to a lack of information. What remains unclear is the specific SWB concerns faced by individuals living with both IBD and a permanent stoma, as well as the level of support they receive in addressing SWB concerns.This study sought to explore the SWB concerns of people living with IBD and a permanent stoma, and to explore their support needs in relation to these concerns.

Methods

This international qualitative study gathered data through telephone interviews with 17 participants (11 female, 6 male) who had a permanent stoma. Interviews lasted between 20 and 130 minutes, and the data were analysed using reflexive thematic analysis.

Results

Four key themes were developed from the analysis. SWB after stoma formation: participants reported feeling isolated, misunderstood, and unable to discuss their concerns openly due to the taboo nature of the topic. Experiences of SWB support: many participants felt that SWB was not adequately addressed by healthcare professionals (HCPs), and when it was, it often occurred as part of a checklist or was initiated by the patients themselves. Perceived barriers from HCPs: participants noted negative attitudes from HCPs regarding stomas, with some being told they might not be desirable intimate partners if they had a stoma. This contributed to their emotional distress. Barriers to holistic care were also discussed, with an emphasis on the need to enhance HCP confidence and skills to address SWB, beyond merely focusing on sexual dysfunction.Vision for future care: Participants offered suggestions for improving care post-stoma formation, including providing more varied sources of information and patient education, and establishing buddy support systems, particularly around SWB concerns.

Conclusion

Individuals with IBD and a permanent stoma encounter significant challenges, especially in the immediate period of stoma formation. There is a pressing need to reshape patient education and information delivery to ensure a smoother transition to life with a stoma, reducing psychological distress caused by a lack of information and the taboo surrounding IBD, stomas, and SWB.

References

Fourie, S., Norton, C., Jackson, D., & Czuber-Dochan, W. (2024). Grieving multiple losses: Experiences of intimacy and sexuality of people living with inflammatory bowel disease. A phenomenological study. Journal of Advanced Nursing, 80(3), 1030–1042. https://doi.org/10.1111/jan.15879

Capilla-Díaz, C., Bonill-de las Nieves, C., Hernández-Zambrano, S. M., Montoya-Juárez, R., Morales-Asencio, J. M., Pérez-Marfil, M. N., & Hueso-Montoro, C. (2019). Living With an Intestinal Stoma: A Qualitative Systematic Review. Qualitative Health Research, 29(9), 1255–1265. https://doi.org/10.1177/1049732318820933