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Ulcerative Colitis
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Posted 10/12/2018 3:51 PM (GMT -5)
Had my colonscopy last week... still in remission! BUT after the biopsy came back yesterday nurse called. Dr still considering me healed and in remission but there was microscopic inflammation. See notes

3. LEFT COLON, BIOPSY:
A. FRAGMENTS OF BENIGN LARGE BOWEL MUCOSA WITH SOME (2 OF 8 FRAGMENTS) SHOWING ACUTE CRYPTITIS, CRYPT ABSCESS, DENSE BASAL PLASMACYTOSIS, AND GLANDULAR DISARRAY (SEE COMMENT)
B. NO DYSPLASIA OR GRANULOMAS ARE DETECTED
Comment: The findings are compatible with active inflammatory bowel disease. No granuloma or any dysplasia is detected.

My nurse said Dr is still considering this remission and I can skip colonscopy for 4 years and maintain current meds.

Any thoughts? My doctor doesn’t seem concerned. They kept repeating remission.

Ps. No symptoms living a normal life other than narrow stools which dr said is fiber issue. I figure I shouldn’t look a gift horse in the mouth but the worrier in me is always waiting for other shoe to drop.
Posted 10/12/2018 5:00 PM (GMT -5)
It sounds like you have some changes that are consistent with having lived with UC for a period of time. 4 years is a long time to wait between scopes. As a person with severe UC, I usually never made it more than 6 months - a year without needing a med switch, so I always ended up getting scoped. hopefully you go 4 years without needing!!! That's a positive thought!
Posted 10/12/2018 6:46 PM (GMT -5)
Keep in mind there are different "levels" of remission.

There is symptomatic remission, where you are symptom free but a scope still shows inflammation and the biopsies do too.

There is symptomatic AND endoscopic remission, where you are symptom free and the scope doesn't find any inflammation, but review of biopsies shows microscopic inflammation. That's where you are now.

Then there is what is called "deep remission," where you are symptom free, the scope looks clear, and biopsies are also clear. That's the ultimate goal with treatment, but it's not often attained. It can take a lot of treatment and maybe even more luck to get into "deep remission."

As for when to have another colonoscopy, I'd just wait and see how things play out. After one has had UC for ten years or so, they often recommend annual scopes for cancer surveillance. Until that time, how often one has a scope depends on how you're doing symptom-wise and how you're handling the Remicade.
Posted 10/13/2018 7:49 AM (GMT -5)
Congrats on the good scope! Make sure you make the most of your remission, get early morning breakfasts at cute restaurants, have no excuses from uc limiting what you do smile

You have some active inflammation: cryptitis and crypt abscesses. You have symptomatic-remission but not clinical/deep/quiescent-remission. It's like scoring a 95/100 on a test, still fridgerator-hanging quality but not absolute perfection. I'd keep doing what you're doing and not worry too much about it.

You were diagnosed in 2013, 5-years ago. Annual scoping doesn't begin until it's been at least 8 to 10-years (depending on doctor who's guidelines you follow etc etc). Waiting 4-more years seems perfectly fine to me, as then you'll be 9-years in and have routine screenings annually or every two years (depending on guidelines etc etc).
Posted 10/13/2018 1:31 PM (GMT -5)
Thanks everyone! I think continuing with living life like before I had the disease is key to my mental well being. Considering I was inches from getting my colon removed and stuck in a 3 month flare 2 years ago...microscopic ain’t bad.

Here’s to everyone’s health!
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