Hi, Research Nut,
I want to give you hope in trying to conceive. I'm 18 weeks pregnant right now and couldn't be more thrilled! I was diagnosed with Crohn's in '99, and I started Remicade in 2001. Once my husband and I decided we'd like to start a family, we consulted with my gastroenterologist and my gynecologist, who referred me to a perinatologist (a doctor who specializes in pregnancy with high-risk mothers and/or high-risk babies.) My gastro and gynecologist advised me I should go off the medications I was taking; namely, Remicade and Mercaptopurine. The perinatologist couldn't offer an opinion, as I was the first patient he had ever seen taking these medications, and there was no research out there. So my husband and I decided I should go off of the medications so we could try to pursue having a biological family. about six weeks after going off of the drugs, I had a major flare. I had no choice but to start back on the Remicade and Mercaptopurine, and once I was healthy again, my husband and I were going to pursue adoption. However, my gastroenterologist suggested I see a doctor at the Mayo Clinic who is one of the experts in the country on Remicade research. While there isn't a lot of research, there have been a numer of women who have had successful pregnancies while on Remicade, and he advised me to stay on my medications and to try and conceive if I wished to have a biological family. In my case, this was much less risky to both my health and that of my unborn baby than to go off the medication and have my Crohn's be uncontrolled.
So after weighing all of our options and considering all of the risks and unknowns, my husband and I decided I would continue on with my regular course of treatment with Remicade and Mercaptopurine and began trying to conceive. Ultimately my husband and I sought treatment for infertility, and we found I have diminished ovarian reserves (most likely due to chronic illness.) Our odds of conception weren't great - less than 8 percent (partly because of the dimished ovarian reserves, partly because I'm 38 years old, and partly because of the Crohn's) but here I am, pregnant. And so far, everything is going as well as I could possibly expect. I do see a perinatologist rather than a regular obstetrician, and while my pregnancy has not reached full term yet, so far all indications are that I have a completely normal pregnancy, albeit I am very closely monitored. I get Remicade infusions every six weeks, and I've had two so far in my pregnancy. I've continued on 75 miligrams of the Mercaptopurine.
One thing that my doctor at Mayo did caution me about: If you take Remicade while pregnant, you should try to avoid getting an infusion your third trimester. Because Remicade passes through the placental barrier, it will suppress the baby's immune system. This isn't a problem in utero, but upon birth, when babies already have fragile immune systems, the Remicade will further suppress the baby's immune system, so I will do my best to time my last infusion before delivery as early in the third trimester as possible, and then I'll have my next infusion shortly after delivering. While trying to conceive, I began to take twice the recommended dose of folic acid, because I have problems with absorption of nutrients, and I've continued with my regular dosage of B-12 but have also now had to add prescribed iron via oral supplement due to anemia. I was also told that it was safe for the baby for me to breast feed while taking Remicade and Mercaptopurine.
Whether or not to continue on medications while trying to conceive and while pregnant is a very personal choice and one that shouldn't be decided before doing a lot of research and seeing the most knowledgable physicians regarding your particular circumstances. Basically I offer my post not as an expert, but as someone who went through five years of thinking that pregnancy was not even going to be an option and two years of intensive research before deciding how to best have a healthy baby if we decided to try to conceive. I felt very hopeless during these years, mostly because I could find such little information about Remicade and pregnancy, so I offer this post to offer others that were in my position hope if you do want to have a biological family. Becoming pregnant while having Crohn's is risky, but so are many worthwhile things in life.
Best of luck in your journey of deciding whether having a family, through biology or through adoption.