What It Was Like Taking Biologics While Pregnant
Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.
For years, I dreamed about being healthy enough to become pregnant. Unfortunately, as I battled the symptoms of Crohn’s disease, I was left wondering if it would happen for me. On days when I wasn’t well enough to take care of myself, I was haunted with the question, would I ever be well enough to carry and care for a child?
Spoiler alert: I have two amazing boys. My oldest is 5 years old. He is a lover of trains, Legos and superheroes; macaroni and cheese; riding his bike; and the movie “Moana.” I thought it might be fitting to announce to the world how I got healthy enough to make this dream a reality: I chose to inject myself with “biologics” (a type of medication used to treat moderate to severe Crohn’s disease, among other illnesses) every other week. This was the only option available to quiet my angry, diseased intestines, and give me the clean bill of health that I hoped for to carry and care for my first child. I took this medication before, during, and after my healthy pregnancies.
I was nervous when my doctor first brought up the possibility of taking biologic drugs. My doctor and I started having this conversation a few years before I would conceive my son. My concerns then were mainly fueled by late-night message board posts full of fear, with users sharing unsubstantiated — and at times, dangerous — falsehoods, claiming things like “biologics will give you cancer” (not really). This is not to blame those who wrote the posts, because I was one of them.
I refused to take biologics at first, even when it became clear that I may lose a portion of my small intestines. Why? Because I let unfounded fears overrule science. Instead, I wanted to try anything else. Restrictive diets. Yoga and meditation. Not eating. And why wouldn’t I want to give these things a go? So much of managing chronic illness can result in a loss of control for the individual, so I was going to grab onto what I could control: my medications. This is admittedly the wrong way to handle things. I should have opened up to my doctor about my fears – but I would need to get pretty sick before I would be ready to do this.
Finally, days before my first wedding anniversary, I could not continue without appropriate treatment any longer. Although my husband and I had spent our honeymoon scheming – planning to start “trying” on this special first anniversary — I had spent the weekend in bed with a heating pad, taking only sips of water and juice while intense cramping took over my abdomen. The pain left me incapable of walking further than the bathroom. When Monday arrived, I tried my best to get through work. But after only an hour, it became clear that I couldn’t handle the abdominal pressure required to sit upright in a chair. I called my doctor’s office for an appointment and asked my best friend (conveniently, also a coworker) to help get me there. The office staff sent me right to the emergency department, where I was admitted to the hospital. As I was rolled to my hospital room, I realized just how bad things had gotten. I couldn’t remember the last time that I had eaten solid foods without throwing up.
With a team of medical experts by my side, I found my voice to engage in shared decision-making with openness and honesty about how I was feeling. I discussed my fears (well, sobbed about them to a slightly uncomfortable surgeon) and advocated for what I thought would be best. After much discussion about my plans to have children very soon, I was able to narrowly avoid surgery by assuring my surgical team that I’d stick to an 8-oz ice chip diet for seven days. While in the hospital, with their oversight, I gave in to everything – steroids, biologics, and bedrest. And boy did things get better fast.
When word got out that I was taking these medications, I soon began receiving troubled emails and Facebook messages (didn’t I want to give the Paleo diet another try?). At a family reunion, a cousin said with concern, “Those are chemotherapy drugs, you shouldn’t be taking those – they’ll kill you. Those are for people with cancer.” This type of feedback left me feeling ashamed for trying to get well.
Who was I supposed to listen to? The concerned “village” or the one doctor, who was working directly with me to review the benefits and possible side effects of this medication. The doctor had my ear for 15, maybe 20 minutes every few months. The family, friends, and coworkers were around me for hours every day. But now I knew how bad things could get for me, and I was determined to work with my doctor to ensure that this wouldn’t happen again for a long time.
The results were right where I wanted them to be: after a few months I had gained weight, I was eating solid foods again, and I was even getting out and doing a little bit of running. Running! After going to the bathroom 15 times a day. Once weaned from steroids, and scopes confirmed disease remission, I was feeling excited and ready to revisit my main goal.
After experiencing a severe blockage and knowing just how unhealthy that situation could become, I became committed to understanding what the research had to say about Crohn’s and pregnancy. What I learned was that I should be healthy and fully healed before getting pregnant – which for me would mean strict adherence to medication. During pregnancy, for best results, I would need to stay on my medication. And after pregnancy, (although we did “pause” the meds for a few weeks around delivery time, to help limit any possibility of infection) I would stay on my medication while breastfeeding. Read more about this research here. What would this look like? What side effects would I have? Would the baby be OK? Science said yes, but I had heard enough concerned voices that I did wonder a little bit.
Turns out, the biggest complication would be wrapping my arms around my gigantic belly to make two injections into my legs every two weeks. But I’d say that the trade-off made it worth it. Otherwise, I was a normal, healthy, pregnant mom.
Fears from the internet, family and friends left me questioning if being on medication while pregnant was the right thing to do. At first, I wondered, as they did, if it would be making the right decision. But I’m here, having had two beautiful pregnancies with two healthy, happy, amazing little boys, feeling nothing but thankful. I’m thankful that I spent time talking with doctors about my true fears, advocating for my desire to have the best pregnancy outcomes possible, and sticking to the research. For me, this meant biologic medication.
If you’re feeling lost in this process, too, take the time to discuss all of your concerns with your doctor, and focus on the new research that is popping up every day. I know I’m glad I did.