Getting Real: Navigating IBD + Pregnancy

One of the questions I have gotten the most around my pregnancy is how my struggle with Crohn's has impacted my fertility, when to try to conceive and my pregnancy in general. Since it is World IBD Day, I figured what time could be better to get into this topic.

I will start by saying that I came into trying to conceive already pretty discouraged after years of being told it was going to be difficult for me because of my health. I had gotten and read so many mixed messages about how IBD can affect pregnancy. I came to the conclusion that no one really knew for sure and we were just winging it really (kind of like a lot of other things with autoimmune diseases). The biggest takeaway I got from my doctors though, was that my body would not be able to sustain a healthy pregnancy if I was not healthy myself.

Our plan was to wait to start trying until I got my health to the best point it could be. I continued with Remicade, focused on what I was eating and tried to manage my stress. This had always been my approach though so I wasn't sure how even with an increased focus, this would change my situation. I truly think it was the mental/emotional shift that moved my health in the right direction. I realized that IBD had more of just a physical impact on me; I had to deal with the emotional impact as well. I started therapy to deal with the guilt issues and there were a lot more than I thought... Guilt around being sick, anxiety around my health, fear of being able to be a good mom. The biggest thing I had to tackle was my inability to have faith that anything could go right for me health wise since it seemed as if there was always something else wrong I had to deal with. Now looking back, I don't even know how I could go into pregnancy with this belief that I was doomed for failure. I developed tools to handle getting difficult medical news and dealing with adversity in a more manageable way. I was in therapy for about a year when I finally felt ready to try to get pregnant. During this year I also worked through stress management and developing healthier ways to cope with stress, which I think made one of the biggest impacts on my IBD. I re-prioritized my life as an effort to reduce stress and focus more on my health and I definitely saw an improvement in both my body and mood. My Crohn's was never technically in remission, but when I felt like I had done all I could, I decided we couldn't wait for perfection or we would be waiting forever. It was time to trust myself; trust that my efforts were beneficial and trust that my body would know when it was time.

Luckily, that time came. If you read my post about figuring out we were pregnant, you know that the month it happened was actually the month my doctor said to STOP trying because she was worried about a thyroid issue. Well the universe and my body wanted what it wanted because we got a big fat positive. I was terrified at first that something would go wrong with the pregnancy and that my body wasn't well enough to sustain it. I went off all of my medication to control my symptoms besides Remicade. This was an adjustment, but certainly worth it to keep baby healthy. We will get into Remicade more later.

During the first few weeks, as I not so patiently waited for our first doctor's appointment, I was very worried because of pain in my abdomen. I couldn't decipher whether the pain was from my Crohn's symptoms or something being wrong with the pregnancy. My pain is pretty consistently on my lower right side so of course, whenever I consulted Google, I was certain I had an ectopic pregnancy. I was so blessed when at our first appointment, my OBGYN said things were looking fine.

Throughout my first trimester, I felt downright horrible between pregnancy nausea and constipation along with my regular Crohn's problems. I also felt very limited on what I could eat since nothing besides carbs were appealing to me and because of my IBD, I don't eat gluten. Around 8-9 weeks, I started to develop increased Crohn's symptoms which made it even more difficult to eat. I ended up losing a significant amount of weight in my first trimester which my doctor was concerned about. I was also very worried that my inability to eat would result in my baby not getting the nutrients he needed. Since all of these concerns were valid and related to my IBD, I began seeing a high risk OBGYN in addition to my OBGYN. I have and will continue to get growth scans done at that facility to track baby's growth in more detail to make sure my IBD symptoms or Remicade aren't negatively impacting him at all. In conjunction with the high risk OB, I also started to see a genetic counselor. We were already planning on seeing a genetic counselor for genetic testing, but she was able to go more in depth with us into the risks/benefits of my Crohn's medications.

Not only was it comforting to have additional medical professionals to consult with, but they also provided me with a lot of information so I feel confident making my own decisions especially around medications to stop or continue.

In addition to the trouble eating and maintaining my weight, I would say the biggest challenge has been figuring out what to do about Remicade. This is another area where the mixed messages are abundant. When I switched to Remicade about three years ago, I did so in part because I would be able to stay on it through pregnancy. From what my doctors had told me, this was the safest Crohn's treatment for me with the most studies around pregnancy. As I moved into my second trimester, I started to have more in depth conversations with my doctors about what my Remicade schedule would look like. No one really seemed to be on the same page with what to do. Mind you, at this point my symptoms were worse, but my blood work was the best it has been in five years because WHY would I expect anything with IBD to make any sense. My high risk OB told me to ask my gastro and my gastro said to ask my high risk OB. There are studies that said Remicade passes over the placenta in the third trimester which could be risky and then there are studies that say that it isn't harmful. I have spent countless hours researching Remicade since it seemed to me that I would have to be the one to make the final decision. Being neither a gastroenterologist or an OBGYN, this is terrifying. After a lot of back and forth, I decided with my OB that it would be best for me to continue on Remicade so as not to risk a Crohn's flare, especially since I was already having some issues. Basically, it is less risky to have a bit of the Remicade pass on to the baby in order to keep my body healthy and to be able to nourish him. The decision was made.

And then Covid happened. From my understanding, the risk Remicade poses to the baby is having a weakened immune system once they are born. In the old world, this wouldn't have been such a concern, but now, bringing a baby into the world with an already compromised immune system seems like one of the most terrifying things I could do. More conversations and back and forth's occurred between me and all of my medical team and there was talk about discontinuing the Remicade, with my last infusion being last Friday (21w5d). I came to terms with this decision and started on Apriso, in addition to my Remicade, so that I could have that to keep my inflammation at bay once I stopped Remicade.

As more studies come out, I am realizing that there really is no answer on what to do when you are pregnant with Crohn's and on Remicade during a global pandemic. Now we aren't sure what is best for me and the baby. Try to get one more Remicade infusion before he gets here? Stop all together just to be safe? As much as my medical team is working to provide me with the best advice, everything is uncertain now and I don't think there are any straight answers to give.

That is where I am at in my pregnancy/IBD journey at this moment. I'm trying to stay nourished, minimize my stress and figure out what my decision will be around continuing Remicade.

I am only a little more than halfway through my pregnancy so I'm sure there will be a ton more twists, turns and medical changes along the way. Right now, there is no indication that my Crohn's will prevent me from having a vaginal birth since I haven't had any surgeries to resection my intestines. As of my last appointment, the baby is growing on schedule and I have my next appointment to check on him again in just a couple of weeks. I pray everyday for our baby boy and I thank God that despite what was stacked against us, the baby and I are doing well.


xx