Getting a Handle on Remission and IBD

Ah, remission. When you hear that word, what does it make you think? Have you ever heard your gastroenterologist utter that word? Even if you hear it, do you believe it? Less than 72 hours ago, I underwent a routine colonoscopy and when I woke up, I was told there was no sign of “active disease” and that I was in remission. It was only the third time in nearly 13 years I’ve ever heard the “R” word. I must say, while it’s always nice to hear you have a handle on your ever evasive disease, it can be a bit disconcerting. Let me explain why.

In the past 72 hours I have felt pain every single day.

I’ve had to unbutton my jeans on the way home from a family birthday party. I’ve spent countless hours in the bathroom. I’ve almost had an accident while shopping at the mall with my mom and had to make a mad dash to the bathroom. Grateful for lots of people flushing toilets and using the loud automatic dryers as I tried to deal with my Crohn’s in public. But guys, I’m in remission.

It’s perplexing that a procedure can show no signs of active disease, yet symptoms are happening left and right. How is that possible? Are we ever truly out of the woods? I tend to put the word remission in quotes, because whether I’m having a good day or a rough day, each and every day is unique. I don’t change my diet or practice less self-care if I’m in remission. My medications and management all stay the same.

The minute you let up on managing IBD and think you have control is when it comes back with a vengeance.

That’s the scariest part. Back in 2014, I had a colonoscopy, and for the first time in my patient journey the GI gleefully told me I was in remission. I remember hearing that word with my mom and boyfriend (now husband), tears rolled down our faces. We went out for cheesecake afterwards and for the first time in a long time I actually felt somewhat in control and invincible. Less than 10 days later, I was hospitalized with a bowel obstruction. I remember crying in the hospital bed, I felt like my dreams had shattered. Remission only days ago, and now this. How is that possible? I was told the procedure can only go so far up my intestine and that my inflammation was higher in my GI tract. In that moment, I started taking colonoscopy results with a grain of salt.

So my question to you is this:

With a chronic illness, is remission possible?

How do you feel when you hear that word? Do you think it’s possible? It’s difficult to aspire to to something that seems impossible to reach. My advice: take each hour of each day as they come. Maybe rather than putting so much emphasis on what a test result finds, focus on how you feel each day. No one knows your body better than you do. And even if you never hear the word remission, know that those of us who have, still have our doubts if it’s even possible.

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