It's funny how you can hear a word several times and not realize it's being applied to you. Severe. My disease has become severe.
It wasn't always that way. When I was diagnosed, the ulcerative colitis only affected the left side of my colon. The best kind of colitis, my primary care doctor said. I took Colazal and used mesalamine enemas each night. The enemas were annoying, but they were the only thing that seemed to help, and the medications didn't give me any side effects. I felt ok most of the time, although I always made sure to know where the bathrooms were. There were some times when I felt worse, but my gastroenterologist was reluctant to prescribe anything stronger, like steroids, and tests continued to show that the disease was mild.
Then about a year ago, things got steadily worse. I couldn't sleep at night, I got up so often to use the bathroom. I was in a lot of pain. I worried about getting to work without needing to use the bathroom on the way. I occasionally had accidents and began carrying an emergency kit of extra underwear and wipes with me. I sometimes wore Depends. And the blood. The amount of blood I was losing was scary sometimes.
It's hard to talk about these things, to admit that I sometimes wore (wear) Depends. I know in my head that it's nothing to be ashamed of, that it doesn't mean I'm less of a person or less attractive. But it's hard, and I'm embarrassed even though I know I shouldn't be. I feel that it is important to talk about though, so here I am.
My doctor finally put me on prednisone, and it helped a lot. I was on and off it while waiting to get a colonoscopy. The colonoscopy showed the disease had progressed and now affected most of my colon. My doctor recommended starting a biologic. But by then I had had it with my doctor and health insurance (more on that in a future post). So I decided to wait until I had switched to a gastroenterologist who specialized in IBD.
About two weeks before my appointment with the new doctor, I ended up in the ER with a bad fever and chills. I was admitted and put back on prednisone. It turned out I also had an infection called c diff, which is not uncommon among those who suffer from these diseases. Being in the hospital was not fun, but it felt like I was finally getting the care I needed. It felt like a fresh start. I got out after five days and saw the new doctor, who started me on Remicade, a type of biologic given by infusion.
The first two infusions went well and I tapered off the prednisone. I went on vacation and for the first time in a long time wasn't constantly worried about where the nearest bathroom was. I felt like I had been given my life back. I started to make plans again.
At the third infusion, I had a mild allergic reaction. Still, they told me it didn't mean the Remicade wasn't working and wasn't necessarily cause for concern. They could probably still give it to me with some additional medications beforehand to prevent a reaction. Then a couple of weeks later, I began to recognize the telltale signs of a colitis flare. I started having blood again and using the bathroom more and more. My doctor put me back on steroids, which had always worked to quickly calm my symptoms. Except this time they didn't.
After a week of prednisone not working, I went back to the ER. They put me on IV steroids, which amazingly did not help either. They did another colonoscopy, which showed severe inflammation. Severe. They tried to give me another dose of Remicade, but I very quickly had a reaction to it again. Clearly Remicade was not the medication for me. My doctor decided to start me on Entyvio, a new drug that she said she has seen work in patients with severe disease. That word again. It slowly began to sink in that my disease had gotten severe. A surgeon came to talk to me about surgical options if all else failed. It was oddly comforting, to know that if nothing else worked they could take out my colon and I might be cured.
So here I am. I am out of the hospital and have had two doses of Entyvio. This weekend I have felt good for the first time in a long time. I am trying to be optimistic that the Entyvio is working, that I will go into remission soon. But I know it may still be a long road ahead. Right now I am just waiting, waiting to see if it works and if I can start making plans again. And being grateful for the good days.
Feel free to share your stories of chronic illness in the comments! Hopefully together we can support each other and feel less alone.