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Have you guys seen this EVEN in remission?

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Ulcerative Colitis
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Posted 3/8/2021 9:09 PM (GMT -6)
Even when I seem to be in remission or somewhere near remission, I have gotten these 2 things below. Have others seen this too?

(1) Microscopic inflammation - The GI doctor said there was no visible inflammation in the colonscopy (obviously good) but when the biopsies were sent there was however some "microscopic inflammation" and some "crypt damage." Is this true for the rest of you or is your pathology report also fully normal?

(2) Intermittent cases of very high urgency - Some days out of the blue, probably based on a certain food irritation, despite having no symptoms for long periods of times, I can get a VERY bad case of urgency where it feels like as if the rectum is inflamed again or something and it freaks me out. I have kept a food log and contributors include strawberry seeds and garbonzo beans and possible other unknown items. Do you guys also have intermittent high levels or urgency during remission? This makes me wonder if there is some sort of permanent scar tissue or other type of permanent damage that creates such a wild urgency?
Posted 3/9/2021 3:49 AM (GMT -6)
I am interested in your question 1 but don't have an answer as such. It seems likely that the colonoscopy can miss out on things that can only be seen under a microscope. So in my head I feel the biospy report should be final report.
Having said that, I don't really understand if doctors go by the Colonoscopy procedure report or the Pathology (Biopsy) report. I had a colonoscopy in 2017 for which the Colonoscopy procedure said 'normal' though some pseudopolpys were visible and the biopsy report clearly said 'UC in remission' but the doctor in his final say while reviewing both reports with me said that the disease is better than what it was in 2016 but not in remission according to him. So I am not not sure how they decide really and am interested to hear other members thoughts on this too.

Also based on my understanding of this disease, being in remission does not mean there cannot be a trigger that can set you off again. The disease is still very much there. Hence the need to be careful to avoid triggers. The food diary sounds a great idea. Most seed, nuts, gluten and beans are certainly triggers in my opinion

Post Edited (Seeker275) : 3/9/2021 2:54:02 AM (GMT-7)

Posted 3/9/2021 7:47 AM (GMT -6)
If you're not fully healed then it makes sense you might still have symptoms.
Posted 3/9/2021 10:47 AM (GMT -6)
Thank you for posting IBD Gal!! I am interested to learn more from the replies.
My daughter is currently experiencing the rectal inflammation and urgency though her stools are formed.


Best wishes..
Posted 3/9/2021 12:29 PM (GMT -6)
My GI says 90% of people "in remission" will show microscopic inflammation on a biopsy.

Urgency can be due to IBS as well as inflammation, so hard to tell if that's an issue.

Food triggers are a highly personal thing and again symptoms can come from ibs rather than ibd.
Posted 3/9/2021 11:49 PM (GMT -6)

iPoop said...
If you're not fully healed then it makes sense you might still have symptoms.

well yes, I think we all know that if one isn't healed, they might have symptoms. But, that's not the question. The question is whether most UC patients in remission have microscopic inflammation or not when "healed" or "in remission" - its hard to tell how normal microscopic inflammation is or is not.
Posted 3/11/2021 10:18 AM (GMT -6)
Same here. Technically I have no symptoms and have been in remission for 3 years. However my path report from October colonoscopy shows “mild colitis”. Discussed with my dr and he said it sometimes depends on the pathologist and the terms they use. He’s not concerned unless I’m showing symptoms. Not sure if that’s a good tactic or not at this point.

Also I totally have days when I have a bit of urgency and increased bm and some mild cramping. Weirdly they seem to happen most often halfway between my infusions and then clear up as I get closer to the next infusion. Not always tho. If it lasts more than a day I’ll use a suppository or steroid foam for a few days.

Gotta love this disease and how it keeps us on our toes, right? Hah!!!! (NOT!!!)
Posted 3/12/2021 2:36 AM (GMT -6)
Did you have colonic crypt damage? I think that is the reason we are having microscopic inflammation. I have been studying it a bit and planning to study more. I was reading that amino acids like threonine are used by the body to repair and strengthen threonine along with some other things. I think if we could find a way to strengthen our crypt and repair damage, that MIGHT erase the microscopic inflammation. Would love to hear from others who have any further knowledge or thoughts on this.

FlowersGal said...
Same here. Technically I have no symptoms and have been in remission for 3 years. However my path report from October colonoscopy shows “mild colitis”. Discussed with my dr and he said it sometimes depends on the pathologist and the terms they use. He’s not concerned unless I’m showing symptoms. Not sure if that’s a good tactic or not at this point.

Also I totally have days when I have a bit of urgency and increased bm and some mild cramping. Weirdly they seem to happen most often halfway between my infusions and then clear up as I get closer to the next infusion. Not always tho. If it lasts more than a day I’ll use a suppository or steroid foam for a few days.

Gotta love this disease and how it keeps us on our toes, right? Hah!!!! (NOT!!!)

Posted 3/12/2021 8:34 AM (GMT -6)

IBDGal said...
I think if we could find a way to strengthen our crypt and repair damage, that MIGHT erase the microscopic inflammation

Maybe that is why so many of us in HW find that some soluble fiber, such as psyllium and psyllium seed powder, is so helpful. Our gut bacteria breaks down the fiber into butyrate which nourishes cells in the colon.

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc7019913/
Butyrate, the product of fiber digestion, is essential for colonic crypt maintenance
Posted 3/12/2021 2:27 PM (GMT -6)
yeah what is interesting to me, for my case, psyillium certainly helps and soluble fiber helps too but when i took butyrate, i had more bleeding and more issues. And that was several times that I tried the buytrate supplements. I was never able to find out why the buytrate gave me issues and still have no clue given that psyllium helps a lot.

IamCurious said...

IBDGal said...
I think if we could find a way to strengthen our crypt and repair damage, that MIGHT erase the microscopic inflammation

Maybe that is why so many of us in HW find that some soluble fiber, such as psyllium and psyllium seed powder, is so helpful. Our gut bacteria breaks down the fiber into butyrate which nourishes cells in the colon.

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc7019913/
Butyrate, the product of fiber digestion, is essential for colonic crypt maintenance

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