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Getting a Handle on Remission and IBD.

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • thedancingcrohnie moderator
    9 months ago

    Thank you for writing this. This is so real.

    I have yet to achieve remission since my diagnosis, however, I have had moments where I feel amazing and have had zero symptoms. I’ve gone into a colonoscopy feeling confident to just be told I am severely inflamed, and that I have severe ulcerations throughout my colon. Then other times I feel awful, go in for a colonoscopy and am told that I looked way better than before and that medications seem to be doing their job.

    It’s all so confusing to me, as tests and procedures, seem to get things wrong compared to how I am feeling. I’ve just learned to take things one day at a time. But I can so relate to what your’e saying.

    Wishing you the best in health!

    Always dancing,
    Elizabeth (team member)

  • anmhartt
    12 months ago

    I have been dealing with this for months. The gastro tries to blame my pain on my hernia mesh. Well, I know the hernia mesh is not inside my intestine! Finally had a colonoscopy and found that my Crohn’s is completely out of control with ulcers and swelling. Funny, the TWO CT scans showed nothing, and only one test came back showing inflammation. Time to start new medication. Praying it works.

  • Jaime H moderator
    12 months ago

    How frustrating for you! Been there. Not everyone displays disease in their CT scans, unfortunately. Wishing you good luck with your new treatment plan and hoping you start to feel better soon! –Holland, Team Member

  • Amanda Osowski moderator
    12 months ago

    So sorry you went through all of this. We’re thinking of you as you start your new medication! Let us know how you’re doing. – Amanda ( Team Member)

  • ce66396
    1 year ago

    Hi All;
    Dealing with a small intestinal blockage at the moment. Felt fine two hours ago, then it started, Took my lorazapam sublingual, my hydrocodone, placed my ice bag on my gut and am in bed. I am praying that I can tough it out on my own and gas starts to move through but also know that will be hours from now. if it does. I know typically I will not sleep tonight from this pain, and will pray/beg increasingly more for divine intervention as the pain slowly over powers the medication.
    Been living with Crohn’s disease for over 30 years, all in the upper part of the small intestines (so yes I am always told my colonoscopy is negative for disease) and mainly with bowel blockages, but also muscle pain, fatigue, poor sleep, and some eye problems. As everyone knows this disease will keep you humble. God bless you all.

  • evaliz13
    1 year ago

    Wow. This is so accurate. I have colonoscopies done every year and then get told “remission”. Yet the pain and diarrhea are there every single day. My labs show remission also but my body has different ideas. Thank you for sharing this now I know I am not alone.

  • Beaglemomx3
    1 year ago

    Oh my goodness, I’m going through this right now! You described my GI perfectly! However, my GP ran some blood work and an inflammation marker is very high; higher than last May when I was dx with Crohn’s. I had colonoscopy and endoscopy in February and while lower GI had healed, they found esophagitis, hiatal hernia and duodenitis. GP believes esophagitis is Crohn’s related, therefore I’m not really in remission!
    Great article, thank you for sharing!

  • Jennifer.- team moderator
    1 year ago

    Thanks for your comment Beaglemomx3 and glad it was a good article for you. Wishing you a great day.

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