Abstract Background Sexual well-being (SWB) is a component of quality of life and should not be overlooked in holistic care. Previous studies have shown that inflammatory bowel disease (IBD) affects SWB through abdominal pain, incontinence, fatigue, body image concerns, and treatment-related side effects. However, little is known about how people living with IBD cope with these SWB challenges. Clarifying coping strategies is essential to improve patient education, peer support, and clinical care. This study aimed to identify and characterize such strategies. Methods Participants were recruited via flyers providing access to an online questionnaire at seven outpatient IBD clinics in Japan. A total of 1,347 flyers were distributed. Of the 251 individuals who described SWB-related experiences and coping, non-substantive responses (e.g., ‘cannot recall’) were excluded, leaving 246 for analysis. Data were analysed using content analysis. Two researchers independently categorized the data, and categories were developed through iterative comparison and review. Disagreements were resolved through discussion and consensus, ensuring credibility and trustworthiness. Interrater reliability was confirmed with a Cohen’s kappa of 0.88. Results The average age of participants was 38.3 years (range: 19–67), including 130 with ulcerative colitis and 116 with Crohn’s disease (131 males, 115 females). Content analysis identified four main categories and 12 subcategories of coping experiences related to SWB. Participants described multiple, overlapping coping strategies. The most frequent was ‘Active barrier management,’ such as avoiding sexual activity, discussing concerns, or preparing for the risk of soiling, reported by 63% of participants. ‘Social and professional support,’ including partners and healthcare professionals, was noted by 40%. ‘Cognitive reframing,’ including positive thinking, was reported by 5%, while 28% of participants were classified under the category ‘Passive or resignation coping.’ Conclusion These findings underscore the need for healthcare professionals to initiate empathetic discussions about SWB, provide relevant knowledge, and integrate this aspect into IBD care. Conflict of interest: Wakai, Sayaka: No conflicts Kawakami, Aki: No conflicts Tanaka, Makoto: Lecture fee: Takeda Pharmaceutical Co. Ltd. (2024) Research support: Awarefy lnc. (2025)
Wakai et al. (Thu,) studied this question.