Ulcerative Colitis and Pregnancy: the Beginning/Awakening/Quickening

Yes, it’s happening here! The possibility of pregnancy! Please insert the prequel subtitle of your choice! I prefer the quickening, since literal quickening would be potentially be happening, but I don’t want to give anyone the idea that this is going to switch over to a baby-times blog. (Said every blogger thinking about pregnancy ever, before giving in to the baby-blogging with a vengeance. Hmmm. “With a Vengeance.” Sounds nice…)

Anyhoo, I have an appointment this week with my new gastro wherein we will discuss pregnancy options. In my initial discussion with the doc’s CNP, I learned once again that Imuran causes birth defects and shouldn’t be taken by pregnant ladies.

If I had a tally going I would say it looks something like this:

THINGS I HAVE BEEN TOLD ABOUT IMURAN AND PREGNANCY

  • DEFECTS DEFECTS DEFECTS………………Check
  • NO DEFECTS…………………………………Check

It’s weird. When I was first got on Imuran about ten years ago, my nurse (CNP and one of the best I’ve ever had), warned me that A. and I should be using multiple birth controls, because Imuran could cause some horrible, horrible congenital defects. Three years later, my Syracuse gastro waved a hand and said, “Of course you can get pregnant on Imuran without danger to the baby. I have two patients who’ve done it.”

I can’t remember what my Texas gastro said, other than that she wanted to be involved with every step, and that I should find a high-risk OB-GYN. (A designation that always makes me think I’ll get to meet some sky-diving, base-jumping, hard-drinking thrill seeker who likes to deliver babies in an Ebola ward.)  While in Texas, I participated in a CCFA webinar featuring two MDs (one from Mayo, one from a hospital in California) who have done extensive research on women with IBD. If you want to check it out, it’s here:

IBD & She: Focusing on Living While Managing IBD

From the webinar’s transcript, at the point where they’re talking about IBD medications and pregnancy:

Now these are some of the more complicated medications. Azathioprine [Imuran] and 6-MP are Category D, as in Dog, because animal studies clearly show birth defects. However, in humans it does appear to be low risk. And new studies suggest that it’s compatible with breast-feeding. Especially if you take the medication and don’t breast-feed for four hours, at that point the amount crossing to the baby is almost negligible.

And a little more:

Here’s just a little bit more data on azathioprine. This is a large study from Israel, 189 women who used azathioprine in the first trimester, and they compared them to women who didn’t. There is no increase in birth defects. However, there was a study from Sweden looking at 476 women who used azathioprine and there was no increase in overall birth defects, but a slight increase in the rate of cardiac defects, so ventricular septal defect, atrial septal defect. However, 300 of those 476 were Crohn’s and UC patients. The others were lupus and other diseases. And the majority of those cardiac defects were in the other diseases. So the study overall suggested azathioprine is not associated overall with birth defects and the majority of those birth defects were in lupus patients and other patients.

Unfortunately, no clear-cut answer here, but azathioprine still appears to be low risk in patients with Crohn’s and ulcerative colitis. And if that’s the only thing you’re on to keep you in remission during pregnancy, it is something that in our practice we recommend continuing to avoid flares in pregnancy.

Flash forward to NOW: within a few minutes of chatting with my new gastro’s CNP, she informed me that studies show Imuran causes birth defects. I mentioned I’d been told differently by previous docs, and she promised to check the research and get back to me. At first, this seemed to be a big case of Midwest versus The Rest. (The Mayo clinic doesn’t count as Midwest, it’s like the Vatican of medicine.) But three weeks later, I got a nice big packet in the mail with articles and a letter (from the CNP) saying that studies show less defects than she’d thought.

In sum, I think A. and I are going to try, once we get the go-ahead. It seems funny to plan this shit out so meticulously, and I can’t really commiserate with friends about it–almost all of my friends with kids are healthy folks who had surprise pregnancies.

Here are the article titles the most recent docs sent me, in case you’re in the same boat, on Imuran and thinking about pregnancy. I don’t know if they’re available online, but if you’ve got access thru your public library databases (or Interlibrary Loan) to these journals, you might be able to get them that way. Or ask your doc, obviously.

– Oral 5-Aminosalicyclic Acid for Inflammatory Bowel Disease in Pregnancy: Safety and Clinical Course (1993)
– Limited Risks of Major Congenital Anomalies in Children of Mothers with IBD and Effects of Medications (2014)
– Inflammatory Bowel Disease and Pregnancy: Evidence, Uncertainty and Patient Decision-making (2008)
– The Safety of 6-Mercaptopurine for Childbearing Patients with Inflammatory Bowel Disease: a Retrospective Cohort Study (2003)

I still have questions, obviously, since studies are huge and this disease is so stupidly individual. Hopefully this week will bring some answers.

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4 thoughts on “Ulcerative Colitis and Pregnancy: the Beginning/Awakening/Quickening

  1. Thanks for posting! I’m not on Imuran but have heard both sides on Lialda. Haven’t done any research myself yet, and we aren’t trying but I’m glad to know I’m not the only one who thinks about these things! Hope you get some answers soon!!

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