IBD Awareness

One Year of Remission

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.

Results from colonoscopy on 2/24/2022

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.

Credit to @weareromanwell on Instagram

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?

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