Objectives Colectomy and subsequent bowel reconstruction in women with ulcerative colitis (UC) is associated with decreased fertility, this survey aims to investigate possible reasons for this. Material and methods Women with UC aged 18–44 years at colectomy 2000–2020 were identified and data were retrieved from the Swedish inflammatory bowel disease register (SWIBREG). Additional information was obtained using a study-specific questionnaire. Results The survey was completed by 214 (72.8%) out of 294 eligible women. Mean age at disease onset was 22.9 years (standard deviation 0.5). No reconstruction was made in 67 (31.3%) women, whereof 24 (35.8%) had a completion proctectomy. Reconstruction was performed with ileorectal anastomosis (IRA) in 66 (30.8%) women and ileal pouch anal anastomosis (IPAA) in 81 (37.9%). Included women had on average 1.67 children (95% confidence interval 1.53–1.81) at the end of follow-up. The desire to have children was negatively affected by disease onset (59.4%), colectomy (44.9%) and reconstruction (36.7%). Altogether, 39.4% estimated that they had fewer children and 9.5% restrained completely from having children because of the disease. Difficulties to conceive were reported by 36.5% including 18.9% who expressed that they could not conceive at all. Difficulties to conceive was more common after reconstruction with IPAA (Odds Ratio [OR] 5.54) than IRA (OR 2.57). Conclusions A majority of women with UC and colectomy expressed that the disease affected their desire to have children, more often limiting the number of children than completely refraining. For childless patients, difficulties to conceive was more common than voluntary childlessness.
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