One year ago today, I had my third colonoscopy that indicated I was in endoscopic remission. The last 365 days have felt like a dream, yet a nightmare at the same time. There are easy days and there are really hard days. Remission is not a cure – but does provide temporary relief. The end goal will always be a cure, but for now I will happily take remission.
When I tell people I am in remission, they immediately think I don’t have issues anymore. There are still foods I can’t eat and activities I avoid because I would rather play it safe than risk a flare over eating some popcorn. No one really tells you how you can still feel sick while in remission. For the most part, I have been able to pursue my daily activities without any interruptions and I am SO grateful for that. I would not be able to do everything I am doing now if I was still actively flaring. Sometimes it blows my mind that I’m able to live a life I am proud of, because I never pictured that for myself a few years ago.
As soon as I stumble across a bad day, my mind starts running in circles wondering if it’s coming back and how I would handle that. I had a few days this week where I truly wasn’t feeling well and thought it was coming back. I felt a sense of dread and overwhelm, because it’s been so long since I’ve had to deal with a flare – what if I forget how to manage it and can’t get back into remission? What if Humira stops working for me? The unknown is what scares me the most. In moments like these, I really have to analyze what is the root cause of my symptoms and solve that problem immediately. Sometimes the root cause is something I don’t really want to face, but my symptoms force me to.
One year of remission and the days are still hard. It doesn’t seem to get easier, because then you get a cold or you get COVID and your body is working extra hard to fight off these infections. I am a magnet for illness. My immune system literally hates me and will always remind me when I need to take a step back. It’s a constant reminder that I’m not like everyone else and I need to prioritize my health, which we all should do anyway.
There are a few different types of remission. A friend of mine who is a Crohn’s and Colitis Dietician and founder of Romanwell, Brittany Roman-Green, describes the different levels of remission in her Instagram post below. I know I have struggled talking about remission with other IBD patients, because remission means something different to each of us. In 2020, I was in clinical remission – not having symptoms, but my colonoscopy still showed some active inflammation. My colonoscopy in 2022 showed that I am in endoscopic remission which means there was no trace of active inflammation in my colon.
For someone who is not very familiar with IBD and the levels of remission, this graphic is a great explanation of that. Remission is not the end of the journey, but rather a part of the journey. Remission can turn into a flare very quickly, which is why it’s called a chronic illness. The work never ends at remission. It still requires so much awareness of your body and how you treat it, which is something I strive to do better with everyday.
What level of remission are you in?