Relationships and Sexuality in Patients with Inflammatory Bowel Disease: Experiences of Patients and Healthcare Providers in Sweden

Background/Objectives: The aim of this study was to investigate the experiences of Swedish patients with inflammatory bowel disease (IBD) regarding intimacy and sexuality-related issues, and to explore both patients’ and healthcare professionals’ perspectives on discussing these topics. Methods: This cross-sectional cohort study used two internet-based questionnaires: one targeting patients and the other healthcare professionals. The patient survey examined the impact of IBD and its treatment on relationships and sexuality, as well as expectations on healthcare support. The survey of healthcare professionals focused on experiences of discussing sexuality-related topics with IBD patients. Responses were analyzed using both quantitative and content analysis. Results: A total of 556 IBD patients and 118 healthcare professionals responded. Among patients, 78% reported difficulties related to relationships and sexuality, with physical symptoms like pain, fecal urgency, and bloating, and psychological problems such as fear of leakage and reduced sexual desire. Over half wished for these issues to be addressed in routine care, yet 84% had never initiated such discussions themselves. Among healthcare professionals, 23% never addressed issues of relationship and sexuality with patients, and another 50% did so only occasionally. Only 15% had access to qualified sexologists for referrals, and just 8% offered sexual rehabilitation after pelvic surgery. Conclusions: Sexual health is frequently compromised in IBD patients, especially in women, but remains insufficiently addressed in clinical practice. Both patients and healthcare professionals expressed a need for more open discussions about relationships and sexuality. Improving care requires routine screening, multidisciplinary support, and the development of guidelines for managing sexual dysfunction in IBD.