The Impact of Inflammatory Bowel Disease on Intimacy: A Multimethod Examination of Patients’ Sexual Lives and Associated Healthcare Experiences

Abstract

Abstract Background Inflammatory bowel disease (IBD) can negatively impact sexual well-being, and some patients desire healthcare for these issues. Research capturing the lived experiences of patients in these areas is lacking. The present study investigated the sexual well-being impacts of IBD (objective 1) and patients’ experiences accessing support for these concerns in the healthcare system (objective 2) through multimethod analyses. Methods A total of 480 adults with IBD were recruited for an online survey study. Reflexive thematic analysis was used to analyze responses to 2 open-ended questions (ie, qualitative data; question 1, n = 326, question 2, n = 309). Frequency analyses and contingency tables were used to analyze quantitative data (n = 436). Results Thematic analysis (objective 1) generated 8 themes highlighting the negative impacts of IBD on patients’ sexual/intimate lives (eg, sexual activity, intimate relationships) and the influence of broader psychosocial experiences (eg, self-perception, mental health) on patients’ sexual well-being. Quantitative analyses (objective 2) indicated that 39.2% of participants wanted sexual health information from a healthcare provider, but only 5.7% of our sample reported both wanting and receiving this information. Thematic analysis generated 5 themes highlighting the lack of support and information available for sexuality concerns in IBD healthcare and detailed patients’ perceived barriers to obtaining support in this area. Conclusions IBD has myriad impacts on patients’ sexual lives. However, patients who want healthcare in this area rarely receive satisfactory support.