Reporting from Advances in IBD 2019: Parenthood Project Consensus Statement

Reporting from Advances in IBD 2019: Parenthood Project Consensus Statement

One of the presentations I attended at Advances in Inflammatory Bowel Diseases (AIBD) in Orlando, Florida in December 2019 was regarding the IBD Parenthood Project. The American Gastroenterological Association (AGA) has put together a clinical care pathway for pregnant women who live with IBD. The pathway was created with input from representatives from different specialties that may care for pregnant women with IBD, including gastroenterologists, maternal-fetal medicine specialists, teratologists, lactation specialists, and patients.

The talk, “Parenthood Project Consensus Statement” was given by Sunanda Kane, MD, MPH, Professor of Medicine at the Mayo Clinic in Rochester, Minnesota. She was also a coauthor on the report, which was published in the April 2019 issue of Gastroenterology and is entitled “Inflammatory Bowel Disease in Pregnancy Clinical Care Pathway: A Report From the American Gastroenterological Association IBD Parenthood Project Working Group.”

Expanding Knowledge About Pregnancy in IBD

This is an important paper and presentation because women are often diagnosed with IBD before or during their childbearing years. “Voluntarily childlessness” is relatively high in the IBD community, at 17% (in the general population it is 6%). The reasons for this are multi-faceted, but one study showed that it is largely due to patients not having access to quality education regarding IBD and pregnancy. 

One of the key points made both in the report and by Dr Kane was that women with IBD who wish to become pregnant should be cared for by a multi-disciplinary team. As she stated in her talk, “It takes a village to take care of a pregnant patient.” She went further to recommend that every woman with IBD who is or wishes to become pregnant “deserves” at least one visit with a maternal-fetal medicine specialist and a dietician, as well as other specialists which could include a lactation consultant and a colorectal surgeon, if needed. 

A major question regarding pregnancy and IBD is in the use of medications throughout the pregnancy. The working group indicates that both biologics and thiopurines are considered low risk during pregnancy and breastfeeding. Dr Kane recommended that “biologics should continue throughout the pregnancy without interruption.”

Takeaways for IBD Moms

A few key points from the presentation that women with IBD will want to know about pregnancy include:

  • For moms living with Crohn’s disease, the absolute risk of a child developing Crohn’s disease is 2.7%
  • For moms living with ulcerative colitis, the absolute risk of a child developing ulcerative colitis is 1.6%
  • When both parents are living with a form of IBD, the risk may be about 30% 
  • Active inflammation is to be avoided during pregnancy because it is the presence of inflammation that may be what drives poor outcomes
  • Folic acid and prenatal vitamins should be started right away, before conception
  • Patients should expect to see their gastroenterologist at least once during the 1st and 2nd trimesters and then as needed during the 3rd trimester
  • “Pump and dump” for breastmilk isn’t necessary as most medications for IBD (even those given during colonoscopy) are only present in minute amounts in breastmilk (Dr Kane indicated that dumping milk isn’t “worth the inconvenience”)
  • Fenugreek is associated with increased risk of bleeding and therefore isn’t recommended for women with IBD who are looking to increase breastmilk production
  • Vaccinations should be given to babies on a regular schedule with the exception of live vaccines for the first 6 months (for women receiving tofacitinib (Xeljanz) and breastfeeding there are currently no recommendations in regards to vaccinations)
  • It’s currently recommended to avoid Xeljanz in the first trimester of pregnancy

Always consult your medical team about any questions regarding IBD or pregnancy.

Key Opinion Leaders to Follow:

Patient Influencers to Follow:

Societies and Nonprofits to Follow:


  • Kane S. Update: parenthood project consensus statement. Presented at: 2019 AIBD Meeting; December 12-14, 2019; Orlando, FL.
  • Mahadevan U, Robinson C, Bernasko N, et al. Inflammatory bowel disease in pregnancy clinical care pathway: a report from the American Gastroenterological Association IBD parenthood project working group. Gastroenterology. 2019;156:1508-1524. doi:10.1053/j.gastro.2018.12.022
  • Selinger, CP, Ghorayeb J, Madill A. What factors might drive voluntary childlessness (VC) in women with IBD? Does IBD-specific pregnancy knowledge matter? J Crohns Colitis. 2016;10:1151–1158. doi:10.1093/ecco-jcc/jjw078
  • Dowty, ME, Lin J, Ryder TF, et al. The pharmacokinetics, metabolism, and clearaance mechanisms of tofacitinib, a janus kinase inhibitor, in humans. Drug Metab Dispos. 2014;42:759–773. doi:10.1124/dmd.113.054940
  • Laharie D, Debeugny S, Peeters M, et al. Inflammatory bowel disease in spouses and their offspring. Gastroenterology. 2001;120:816–819. doi:10.1053/gast.2001.22574

2 thoughts on “Reporting from Advances in IBD 2019: Parenthood Project Consensus Statement

  1. Danielle O'Connor

    Amber there’s so much incredible information in this edition!! I was so oblivious to what was right for my pregnancy…back in the old days…. Thank God there’s information and advocates like yourself to help this newer IBD generation!! Be blessed and be well don’t over do it this season be kind to yourself my friend!
    Love and hugs,

    1. Amber Post author

      I think in the “olden” days we knew so little. Even just a decade ago when I had my kids so much less was known. Even so, we did the best we could with what we had! xox


Leave a Reply

Your email address will not be published. Required fields are marked *