Little is known about how young women with IBD make decisions about reproductive health topics, including birth control, pregnancy, and period symptoms, and about how they prefer to learn about these topics.
Why was this study done?
Active inflammatory bowel disease (IBD) increases the risk of pregnancy complications and side effects from using birth control (contraceptives). Although young people are at higher risk for unintended pregnancy than older people, those with IBD tend not to receive much information about the connection between IBD and reproductive health. Little is known about how young women with IBD make decisions about reproductive health topics, including birth control, pregnancy, and period symptoms, and about how they prefer to learn about these topics.
This study was made possible through the support of ImproveCareNow (ICN) along with the IBD Partners Patient-Powered Research Network. We used the ICN and IBD Partners networks to recruit participants for this study. A Patient Advisory Board, made up of ICN Patient Advisory Council members, helped us to design this study and to understand the results.
Study overview
We wanted to learn how having IBD affects young women’s choices about reproductive health, including birth control, pregnancy, and period symptoms. We also wanted to learn what kind of reproductive health support they want from their IBD care team. To address these questions, we interviewed women with IBD ages 18 to 30 across the United States about their thoughts and experiences with birth control, pregnancy, and period symptoms, and then we summarized the themes that came out of the interviews.
Study limitations
Since this study only included people who were assigned female at birth and identify as women, our findings may not apply to other pregnancy-capable people with IBD. In addition, this study did not include viewpoints from women with IBD who had never either considered using or used birth control.
What does this mean for patients, families, and clinicians?
Young women with IBD often have unique concerns when it comes to birth control, pregnancy, and period symptoms. Some said that IBD played a big role in their reproductive health decisions, while others didn’t feel it affected them as much. Many women shared fears about whether they could get pregnant in the future, whether their future children might inherit IBD, and how pregnancy might affect their disease. Several women shared that IBD can make periods more difficult, which led some to use birth control to help manage symptoms. Others worried about side effects—like blood clots—when choosing a contraceptive method.
Importantly, most participants said they want their IBD provider to talk more openly about these topics, offer helpful information, and work closely with reproductive health specialists, such as their primary care doctor or obstetrician/gynecologist, to coordinate care.
Study authors
Erica J Brenner, Mary E Grewe, Catalina Berenblum Tobi, Amy G Bryant, Marla C Dubinsky, Xian Zhang, Millie D Long, Michael D Kappelman, Mara Buchbinder
Study stats
This study was published in December 2024. You can locate it on our website and online in Crohn’s & Colitis 360
- Study citation: Erica J Brenner, Mary E Grewe, Catalina Berenblum Tobi, Amy G Bryant, Marla C Dubinsky, Xian Zhang, Millie D Long, Michael D Kappelman, Mara Buchbinder, Perspectives on Contraception, Pregnancy, and Reproductive Health Counseling from Young Women With Inflammatory Bowel Disease, Crohn’s & Colitis 360, Volume 7, Issue 1, January 2025, otae078, https://doi.org/10.1093/crocol/otae078
- Study sharing: © The Author(s) 2024. Published by Oxford University Press on behalf of Crohn’s & Colitis Foundation. This is an Open Access article distributed under the terms of the Creative Commons Attribution-Non-Commercial License (https://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact [email protected] for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact [email protected].
🔎 This ICN Research Explained was prepared by: Erica J Brenner, MD, MSCR, Division of Pediatric Gastroenterology, Department of Pediatrics, Center for Gastrointestinal Biology and Disease, University of North Carolina at Chapel Hill and Amanda Fates, Parent, ImproveCareNow Research Committee
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