N05 Are we meeting the sexual wellbeing concerns of patients with IBD and a stoma? A survey on current practice in addressing sexual wellbeing

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Abstract Background People with inflammatory bowel disease have a high incidence of stoma formation, either temporary or permanent. Although a stoma can be a life saver, for some it can negatively impact body image and psycho-emotional wellbeing. Sexual function can also be affected by a poor body image. Therefore, intimacy and sexuality should be addressed in clinical settings during stoma care. We aimed to explore the experiences of sexual wellbeing concerns of people living with IBD and a stoma, and how these were addressed by healthcare professionals. Methods This was Stage 1 of an international mixed method study. Data were collected via an anonymous online survey advertised on social media platforms and charity webpages. Results These are the quantitative results. 134 participants with IBD responded: 11 had colostomy and 123 had ileostomy. Time from stoma formation to survey response was between 2 weeks to 32 years. Peristomal hernia was reported by 27.6% (n=37) participants. Only 30.5 % (n=41) reported that sexual wellbeing was discussed around the time of their stoma formation, mainly with their surgeon or stoma nurse. Some 33.5% (n=45) reported having had no intimacy and sexuality concerns at all at the time of stoma formation. The patient perspective on barriers for asking healthcare professionals (HCPs) questions about sexual wellbeing despite having concerns, were reported as being ashamed to ask, afraid of being judged by their HCPS, and not knowing what to ask as being overwhelmed with technical information related to stoma care. Around 66% (n=89) reported having concerns related to their intimacy and sexuality following stoma formation, with the top three reported concerns being appearance/body image, fear of rejection from partner, and bag leakages. All participants reported wanting sexual wellbeing discussed routinely at any point of care, and the majority wanted partners involved in these discussions. Conclusion Patients expect to be informed about intimacy and sexuality aspects as an integral part of stoma care. Current practice does not meet the patient’s care needs, with potential for having a negative impact on their overall quality of life, since a significant number of ostomates report sexual wellbeing concerns after the stoma formation.Sexual wellbeing conversations should be an integral part of perioperative and stoma care to prevent persistent concerns within this patient group. Not providing adequate information during stoma care about sexual wellbeing can negatively impact their quality of life. The results will form the basis of an interview guide for the second (interview) stage of the study, to understand better the reasons behind these findings.