In childhood, when I imagined my life as an adult, it always featured a tall, dark, and handsome husband (check), a cute dog (check), and a few kids of my own. Until about 21 weeks ago, I had yet to check the “kid” box. Happily, I am now fortunate enough to be in the 25th week of my first pregnancy.
The part I definitely didn’t envision as a child, however, was being pregnant with Crohn’s Disease. While I have been lucky enough to have remained in remission so far, there are a number of things I’ve noticed about my pregnancy that are quite different than the experiences of my family and friends.
I’ll say here that all of the details below have been particular to my personal circumstances. Everybody and every body are unique, but some things that I have encountered so far are doubtless seen by other Crohn’s moms-to-be.
Let’s start at the beginning. Actually, before the beginning.
My GI has always been excellent about taking family planning into consideration for my treatment plan. Before my husband and I were even talking about trying, she made sure to get regular updates on our thoughts, and answered questions about drug safety during pregnancy. When we did decide that we were ready to get ready (with a few delays along the way – thanks, melanoma), she ordered some testing to make sure that my apparent remission was actual remission.
We also talked extensively about what could happen if and when I got pregnant. She explained that there’s generally a rule of thirds: one third of women will see improvement in their disease, one third will remain about the same, and the final third will worsen. There’s no way to predict which third you will fall into, but the best bet to achieving a healthy pregnancy with Crohn’s is to be in remission before conception.
The morning I found out I was pregnant was a bit of a whirlwind. When the test stick turned pink very quickly, I was in shock. I called my husband – who was on his way to work at the time – had a happy cry, told my dog, and then called my GI. My doctor knew before my own mother.
I ended up seeing my GI before I even got in to see my family doctor. One of the first indicators that this pregnancy likely wouldn’t follow the “normal” medical route is that my GI referred me to a high risk OB immediately. I was about six weeks pregnant. She has a colleague that she works with fairly frequently, and who is familiar with how Crohn’s can complicate pregnancy and delivery, as well as the various therapies that are used.
We then discussed altering my infusion schedule. My GI worked with Takeda – the company that makes and administers Entyvio – to change my appointment dates. She wanted to ensure that I have a dose around 32 weeks of pregnancy. After that, I won’t receive any more infusions until after delivery. This way, the drug is at its lowest possible level in my blood around the time of the birth, and it’s intended to minimize any possible immune-suppressing effects on the baby’s digestive system.
Another unusual step she took was ordering Fecal Calprotectin (FCP) testing for me to complete every other month until I deliver. While I was in remission prior to getting pregnant, the risk that I will flare is still very real. My GI explained that the usual blood testing that most of us are familiar with to look for inflammatory markers is not reliable during pregnancy. When pregnant, the body naturally exhibits higher levels of inflammation, so relying on the blood numbers alone doesn’t paint an accurate picture of what’s going on inside. Of course, having a colonoscopy to physically look for active disease is rough at the best of times, and not recommended during pregnancy.
The FCP tests are a real joy to complete. They come in the form of a do-it-yourself, at-home stool sample kit that is sent to a lab for special inflammation testing. Seriously, you really haven’t lived until you’ve pooped onto a paper toilet shield, and scooped that poop into a TINY container with an even tinier spoon. Oh, and then sent the aforementioned poop off to Dynacare by Purolator.
Once I completed my 8 week dating ultrasound and pregnancy confirmation blood work through my family doctor, I had my first appointment with my OB. I was told by the resident that seeing her at 10.5 weeks was unusually early, as most patients are not seen until at least the second trimester. At that appointment, I went through a full Crohn’s history alongside my other medical history details. My OB is wonderful, and has a very thorough understanding of the disease. She let me ask as many questions as I wanted, and already had clear answers for a few of my biggest concerns:
1. What about nutrition?
My OB put me on special prenatal vitamins for several months to help with any potential absorption issues. These particular vitamins split up the dosing between a morning pill (which contains iron, and other usual prenatal ingredients), and an evening pill. The evening pill contains calcium, which can inhibit iron absorption and vice versa when they’re taken together. They also have a much higher dose of folic acid (5 mg) than drugstore vitamin brands to make sure the baby is getting enough of this vital nutrient. She encouraged me to simply eat as healthily as possible, and mentioned that we would be having frequent appointments and ultrasounds to confirm that the baby’s growth is healthy.
2. Tearing during delivery.
This is probably the thing I was most worried about. I mean, it’s not pleasant for anyone, but tears can cause significant issues for people with Crohn’s. Slow healing, infection, disease in the rectum, and recto-vaginal fistulas are all things that could happen if the tear is severe, and Crohn’s decides to strike. My OB gave me an action plan for what we’ll do if this is something I experience, and it really put my mind at ease. I highly recommend asking about the issues that are most important to you when you meet your OB. Then, you can relax in the knowledge that if problems arise, they will be handled.
3. Effects of Entyvio on the baby?
Both my GI and OB agree that the best way to ensure a healthy baby is to have a healthy mother. For me, that means a biologic drug in the form of Entyvio. While we know that Entyvio does pass to the baby through the placenta, the limited studies to date show no negative effects on babies born to mothers who received it. The only thing we will be careful to do, is likely to delay some vaccinations after the baby is born to make sure that the slight immune-suppression has completely worn off. I have also enrolled in a monitoring program which allows my test results to be used for future study.
So far, I’ve had very close monitoring from both my GI and my OB. I see my GI every 2 months so that she can monitor my progress and check in regularly. If I were not pregnant, I’d be seeing her every 4-6 months in remission.
My OB appointments have been every 4 weeks plus testing appointments since my first one at week 10.5. Just like with other pregnancies, the closer I get to delivery, the more frequent these appointments will be. I have also had three ultrasounds (dating, NT, and anatomy) so far. If it appears that my measurements for baby’s growth are off, I will have additional ultrasounds to get more insight.
At just over half way through my pregnancy, there are plenty more questions and considerations to come in my medical plan: whether to breastfeed on Entyvio, what to do if I flare after delivery (which is common), how to handle scar tissue if I deliver by C-section.
For right now, I’m focusing on taking each appointment as it comes, asking questions when they arise, and enjoying this incredibly special time. For anyone reading who is currently pregnant, planning a pregnancy, or just thinking about it – no matter the stage – I would encourage you all to do the same. Talk to your doctor(s), come up with a flexible plan, and never be afraid to ask about the things you’re unsure of.
Best of luck, and good health to everyone now and in 2019!