From Infusions to Pills: An Update

At the beginning of the year, I wrote about some strange, possibly colitis-related things that happened to me in December. I had an infected abscess that could turn into a Crohn’s-related fistula, some digestive symptoms, and a swollen ankle. I also saw a new gastroenterologist, who ordered tests of my Entyvio levels and antibody levels and a flexible sigmoidoscopy for January.

I started feeling better around Christmas. My ankle was back to normal, my digestive symptoms had improved, and my abscess was healing. I flew back to DC for an Entyvio infusion on December 28. I hadn’t gotten the lab results yet, but I was expecting them to show that my Entyvio levels were low and that I needed to get infusions every four weeks instead of every six weeks.

But as I should have expected by now, this disease surprised me once again. My doctor called a week later to tell me that I had sky-high levels of antibodies to Entyvio and virtually no medication in my system, meaning that I had developed a resistance to the medication. There was no point in continuing the Entyvio infusions. I was shocked, especially since I felt completely fine by the time I got the results. Both my doctor and I were surprised I wasn’t having more of a flare. We decided to do a colonoscopy instead of a flex sig to see how things looked and to try to figure out if I really have ulcerative colitis or Crohn’s disease, which could help determine which medication to try next.

Amazingly, the colonoscopy and biopsies showed that I am in deep remission. Because of scarring, my doctor couldn’t see my terminal ileum (the end of my small intestine), which would help determine if I really have Crohn’s disease, but she still thought it looked more like ulcerative colitis than Crohn’s. She also thought the abscess was just a follicle that got infected, unrelated to IBD. Overall, it was the best possible news I could have hoped for from a colonoscopy.

Because my disease has been so severe in the past, my doctor thinks I will need to be on another biologic long-term, such as Stelara, Xeljanz, or Humira. But for now, since I’m in remission, it’s hard to justify starting a biologic. So she prescribed Lialda (mesalamine), which I was on for a brief period of time before my disease became severe. I take two pills every morning, which is a welcome change from infusions.

When I started Remicade and then Entyvio three years ago, I assumed I would be on a biologic for the rest of my life (or at least until needing surgery to remove my colon or until something new gets invented). I would never have guessed that there would be a point where I’d be in remission and could just be on two pills of mesalamine a day. This disease continues to surprise me, and I have so many questions that will never be answered. How long has it been since I developed antibodies to Entyvio? Was it last January, when I started having some mild symptoms and was prescribed Rowasa enemas? Was I actually having a flare in December, or was all of that just because I got a random infection?

And of course the biggest question: When will my next flare be? I know it is only a matter of time before I start having symptoms again and need to figure out which medication to try next. For me, learning to live with that uncertainty has been one of the hardest parts of having a chronic illness. But for now, I’m trying to enjoy being in remission and taking only two pills a day that don’t suppress my immune system.