Introduction Enabling women with inflammatory bowel diseases (IBD) to a have successful pregnancy requires complex decisions. This study aimed to assess patients' views on IBD and pregnancy and to correlate them with knowledge.

Methods Female IBD patients aged 18–45 years were recruited from Australian gastroenterology clinics and private offices. Data were collected on demographics, disease specifics and previous pregnancies. General attitudes were assessed on fertility, medication use, mode of delivery and pregnancy outcomes. Attitudes regarding their personal situation were assessed in participants who had not given birth since their diagnosis of IBD. Agreement was rated on 5 Point Likert scales and knowledge of pregnancy related issues in IBD was assessed by the recently validated Crohn's and Colitis Pregnancy Knowledge Score “CCPKnow”. Statistical analysis was performed using Student t test and ANOVA.

Results Of 145 women (median age 32 years, 70% married) 45% had Crohn's disease, 45% ulcerative colitis and 10% IBD-unclassified. 49 women had successfully delivered children after their diagnosis of IBD. General attitudes: Only 51% agreed that IBD medication should be continued prior to conception. 68% agreed with the need for medical therapy for flares during pregnancy, but 24% felt it more important to tolerate symptoms rather than to have medicines. 36% of participants believed that any IBD medication is “bad” for unborn children. Patients believed that women with IBD are likely to have a vaginal delivery (87%) or a healthy baby (68%), but 37% expected a difficult pregnancy. 70% thought that women on IBD medication should not breastfeed. Personal attitudes: Of 96 nulliparous women after IBD diagnosis, 46% were worried about infertility, passing IBD to offspring (75%) and 30% considered not having children because of IBD. 90% worried about the effect of IBD on pregnancy and 91% about the effects of pregnancy on IBD. Correlation of attitudes and knowledge: General attitudes that “medication should be stopped prior to conception” (p<0.001), “pregnant women should avoid all IBD drugs” (p<0.001), and “put up with symptoms” (p<0.001) were all associated with significantly lower knowledge. Personal attitudes were not associated with knowledge.

Conclusion A significant minority of women felt that IBD medication is harmful to unborn children and women should put up with symptoms. Fear of infertility and concerns about inheritance may explain the extremely high rate of women considering not having children because of IBD. Views contrary to medical evidence were associated with significantly lower knowledge; education and personal counselling should be offered to young women with IBD, particularly those with a low CCPKnow score.

Competing interests None declared.