Abstract Background Surgery for inflammatory bowel disease (IBD) often carries a hidden cost in terms of sexual function. Traditionally, when measuring outcomes, the focus has been on those easily measured, quantified, analysed and applied to health economics, such as mortality, morbidity and disease recurrence. Whilst research in this subject area is expanding, there are limited qualitative data specifically investigating patient experiences of sexual dysfunction post-surgery for IBD. This study aims to produce an in-depth exploration of patient perspectives of sexual dysfunction after surgery, and to assess the broader impact on relationships, intimacy and quality of life. Methods An exploratory qualitative study was performed following the ‘Standards for reporting qualitative research’ (SRQR) recommendations. Purposive sampling was employed to recruit a diverse group with differing ages, genders, ethnicities, sexual orientations, religions and relationship status. Participants were recruited from clinical settings, social media and national IBD charities. An interview guide was developed iteratively, with input from an expert patient, qualitative researchers, sexual function experts, gastroenterologists and colorectal surgeons. Semi-structured interviews were conducted via Microsoft Teams/Zoom and audio-recorded, transcribed and analysed. Thematic analysis was conducted using the Framework analysis method (open coding with an inductive approach). Results Qualitative interviews were conducted (n=10, 5 females, 5 males, median age 47, age range 24-69), including patients with Crohn’s disease (n=6) and ulcerative colitis (n=4). Participants were of varying sexualities: heterosexual (n=8), pansexual (n=1) and asexual (n=1). Surgeries included fistula surgery, stoma formation, proctectomy and ileo-anal pouch formation. Thematic analysis revealed physical dysfunction including loss of sensation, impaired pelvic muscle control, erectile and ejaculatory dysfunction, diminished orgasmic sensation and adjustments to sexual positions. Psychological impacts were prominent, including loss of desire, altered body image and a sense of shame/stigma. The impact on spontaneity, intimacy and the overall sexual experience was substantial. Crucially, this often led to relationship strain and breakdown, resulting in further isolation and frustration. Conclusion Patients who retain ‘normal’ sexual function after surgery can still experience psychological challenges that significantly impact their sexual desire, spontaneity, relationships, intimacy, and sexual experience. These interviews have revealed the often unspoken effects of surgery for inflammatory bowel disease, emphasising the need for healthcare professionals to address these issues in clinical practice.
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