Part 5: Living with Crohn’s Disease

Springtime rolled around and the best thing at the absolute worst time happened: I discovered I was pregnant.

Brian and I made small strides forward despite the struggles we’d been through. We stumbled through learning how to manage what I was experiencing physically and emotionally. Nothing had changed in the way of treatment, but we quickly learned how to be more intentional with our time and worked on healthily navigating disagreements so the anger and depression were not all-consuming.

We learned to prioritize our relationship— balancing the different needs we each had with the responsibilities of parenting. I found myself a happier mother and person despite all of the physical challenges. We even planned a long weekend away together to rest and reconnect after the heaviness of the months that had followed my diagnosis. We viewed it as a time to re-charge and celebrate what we’d overcome. Unfortunately, a few of days after returning home, we lost our baby.

It was a devastating hit. It hurt even more when Dr. A shared his slight relief at my miscarriage because “it’s less complicated for treatment.” I was so resistant going to our local hospital during this miscarriage. I experienced our first miscarriage in the ER there, so I mentally associated it as a place of immense loss and pain. I couldn’t go back and lose another child there again. After hours of labor-like pains and floods of tears, my body completed the miscarriage in our own home.

As devastating as the miscarriage was, I tried to stay focused on the goal: fail the treatments, get the shots. By summer, the biologics were finally approved by the insurance company. It didn’t feel like a win though; It felt a whole new kind of terrifying. If the side-effects of prednisone were harrowing, what would I experience on this new medication? I tapered off of the prednisone and began weekly injections of Humira. After just six weeks, I received the news that insurance would no longer cover the medication.

At this point in time, I had been in poor health for just over one year. Frustration was the polite way to describe my feelings. In July I discovered I was pregnant again. Feeling as though I’d been let down by almost every doctor and nurse I worked with over the past year, feeling like a puppet controlled by the insurance company, and feeling defeated by a disease I had no control over, I walked away from my medical team and stopped making appointments. I was off prednisone and out of Humira injections, but I feared suffering a third miscarriage more than the unpredictability of my disease. I decided to move forward with this pregnancy without medication, and I never saw Dr. A again.