In May, right after my last Remicade treatment, I shared a post with an update on my experience with having Crohn’s and being pregnant. In that post I opened up a ton about this journey and ended it with a kind of “to be continued...” especially around what my treatment would look like through the rest of my pregnancy. Since then I have received a lot of questions around what my next steps were and how things have been going since that update. So here we go....
I made the decision to discontinue Remicade for the third trimester of my pregnancy. I was back and forth about this decision for months prior to making it. I got medical input from my gastroenterologist, my OB, my high risk OB, and my genetic counselor. On top of that I also did my own research and had conversations with Matt. What it really came down to is what felt right for us. As so many things with pregnancy, I feel like this is the case.
What really surprised me was the lack of certainty any of my doctors had around the decision. They presented me with facts, some more thoroughly than others, but the decision was always up to me. I appreciate that freedom, but in this situation I really craved a professional just to tell me the right thing to do. I know there are conflicting views, which I feel like I’ve heard all of from different members of my care team, but I wanted more guidance. Especially with hearing how conflicting these opinions were, I quickly realized the lack of consistency across my care team and the reality that Matt and I would have to make the final decision.
Let me backtrack a little and say, I know you always have a choice if you take a prescribed medication or go through with a specific treatment. Usually it is a lot more cut and dry though and there is a specific recommendation from your doctor based on plenty of research and experience. With Crohn’s and other autoimmune diseases it never feels as certain, and this is even more true in pregnancy. These diseases are still so misunderstood as is their effect on the body. This makes treating these diseases a challenge and even more so when you are concerned about the health of a baby.
Originally part of the reason I started on Remicade was because it has been on the market the longest and had the most studies proving that it was safe for pregnancy. This was very reassuring and I felt pretty confident about the safety of the drug. Then when Covid came into the picture things kind of hit the fan. One of the concerns of Remicade is that the effects on the baby aren’t totally known as they pass through the placenta in the third trimester. One of the risks I heard the most was that the baby could be born immunosuppressed and it could take him a while to build up his immunity after getting the Remicade out of his system. In normal times this didn’t seem so bad. It’s not like I was going to be out and about with my newborn all the time and of course I would take appropriate precautions as I do for myself. Well, once an international pandemic is running rampant, the thought of bringing my child into the world with the potential of a weakened immune system was something I could not get behind.
I continued to gather information but the situation with Covid really pushed Matt and I in the direction to stop Remicade after my last infusion at around 21 weeks. There was talk about trying to fit one more at the very beginning of the third trimester but I decided against it. I was concerned that if the baby came early that would cause an issue and I didn’t even want that to be and additional worry we had.
Originally my OB’s were pushing me to stay on Remicade throughout the whole pregnancy because if my health was bad it would impact the baby’s health. Luckily throughout the pregnancy so far my blood work has been better than it’s ever been and my symptoms have been manageable. When I knew stopping Remicade was a very real possibility, one of my gastro’s started me on Apriso (oral pills) that are safe for pregnancy and would hopefully help to soften the blow of going cold turkey off of Remicade treatments.
As I said before, I had my last treatment between 21-22 weeks and would have been due for my next treatment last Friday if I were to continue. Over the past two weeks or so, I have noticed an increase in symptoms but nothing alarming or that would be risking for baby. I’m monitoring my body closely and my OB’s are monitoring me and baby very closely, so I feel comfortable moving forward. I’m trying to make sure I keep symptom triggering things at bay, like stress, and I am being very intentional about listening to what my body (and baby) need food and sleep wise.
Overall, what I’ve realized is that pregnancy with Crohn’s requires a lot of research and following your gut (no pun intended) just like having Crohn’s without being pregnant. There really are no cut and dry answers and opinions between professionals are often very conflicting. Having the uncertainty of an unprecedented global pandemic thrown in really shakes that up as well. We had to make the decision that felt right for the baby based on the current situation. The uncertainty of if I have made the “right” decision weighs on me very hard, but I try to remind myself I am doing the best I can and that’s all I can do.
Looking at this outside of just my personal experience, I think this brings up some gaps in the healthcare system as well as reiterates the additional emotional stress those impacted by Crohn’s and other autoimmune diseases have to endure. As far as the healthcare system, let me say that I truly love my providers and trust them so much. I don’t think the uncertainty is a reflection of them, I think the issue is the underlying lack of cohesive care that could be provided through increased communication among providers. I’ve experienced this before where Crohn’s impacts so many systems in your body, you are seeing multiple doctors, but there is no consistent communication between the providers. I don’t want an OBGYN who is an expert is gastrointestinal diseases, I want one who is an expert and delivering my baby of course! That is why there are doctors specializing in different areas, but that doesn’t do us any good if there is a lack of communication between a patient’s care team. Again, I don’t think this is the fault of my providers, I think it is an issue deep rooted in our medical system. All of the uncertainty puts more pressure and responsibility on the patient to do their own research, be the liaison between doctors, and ultimately make the final decision on treatments based on often conflicting advice.
Pregnancy with Crohn’s has been quite and adventure and one I am still going through! I feel like I say this all the time, but I truly am so thankful to have this platform to share my experiences. Throughout pregnancy I’ve leaned on online resources and communities, just as I did after my Crohn’s diagnosis. I believe there is a lack of resources about such a niche topic, but a topic that still impacts so many. Hopefully getting my experiences and opinions out there will help another Crohn’s mama who is looking for support.
Blonde babe. Maryland native. Crohn's crushing puppy mother to two sweet rescues.
Welcome to my unfiltered commentary on crushing chronic illness in your 20's and everything that goes along with that.