I’ve always been scared to take medication. I’m the kind of person who reads all of the side effects and then imagines I have all of them. When I was first diagnosed with ulcerative colitis, my gastroenterologist prescribed Rowasa enemas and then Colazal. I was scared to take those, even though I’ve since learned that they are among the mildest medications used to treat IBD.
I was afraid to take anything stronger for a long time. I hoped to avoid taking steroids like Prednisone and didn’t even want to think about immunomodulators like Imuran or biologics like Remicade. My first gastroenterologist reinforced this by being extremely hesitant to prescribe anything other than the types of drugs I was already taking. So for several years, I gradually felt worse and worse while trying anything else I could think of to manage my symptoms. I kept cutting out lactose despite having already ruled out lactose intolerance. I tried the Specific Carbohydrate Diet and stopped eating all of my favorite foods. I tried drinking pomegranate juice because I read somewhere that it helped with inflammation.
Eventually both my doctor and I had to face the reality that none of this was working. I was having over ten bowel movements a day, all of them with blood. She prescribed Prednisone. And despite all of my anxiety about the side effects, it wasn’t that bad. Sure, it messed with my sleep and my face got puffy and I couldn’t stop eating. But I felt a lot better and could go out without worrying about having an accident.
By the time I faced the decision of whether to start a biologic, it wasn’t much of a decision. Every time I tried to go off of Prednisone, I started flaring. I worried about leaving the house to go down the street to the grocery store because I wasn’t sure I could make it without needing to use the bathroom. I wore Depends when I did have to leave the house for an extended period of time. I eventually wound up in the hospital.
So by the time both my old gastroenterologist and the new one I switched to told me it was time for a biologic, I didn’t protest. I was ready to start feeling better. I was ready to start making plans without worrying I’d have to cancel them.
There are real concerns with taking biologics, and I still had a lot of fears. A few points helped me feel better about doing it:
There is a risk of getting cancer from biologics. However, the risk is small. Letting ulcerative colitis go untreated is also risky and can lead to an increased risk of colon cancer and other complications.
Of all the medications used to treat IBD, my gastroenterologist told me that Prednisone is the most dangerous. It has serious long-term side effects. I needed to find a way to treat my disease that didn’t involve going on and off of steroids indefinitely.
Finally, it came down to quality of life. I didn’t know what side effects awaited me if I started a biologic. But I did know that I didn’t want to keep living my life the way I had been the last year.
It hasn’t been an easy path. I failed Remicade quickly and ended up back in the hospital before trying Entyvio, which worked really well for two and a half years. I just learned that I have developed resistance to Entyvio and will need to try something else. Even though it’s been hard, I don’t regret any of it for a second. Entyvio gave me my life back and I am hopeful that I will find something else that works. Even though biologics weaken the immune system, I don’t get sick more often than I did before going on an immunosuppressant. The benefits have far outweighed the costs.
I sometimes wonder if I had had a doctor who was more aggressive from the start, if my disease wouldn’t have become as severe as it did and if I would have felt better a lot sooner. But I don’t think I would have been ready to start a biologic sooner. I needed to get to a point on my own where I felt it was necessary.
If I could talk to my 2015 self who was making her own yogurt every weekend and drinking pomegranate juice, I would tell her not to be so worried about taking stronger medications. I would tell her that most of her fears about them wouldn’t come true, and that she would feel better than she could imagine. After all, that’s the way I’ve felt after doing most of the things that have scared me.