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Colonoscopy Results from Yesterday

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Ulcerative Colitis
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Posted 2/20/2018 5:13 PM (GMT 0)
I've had ulcerative colitis for about 34 years now. I started taking probiotics in 2004 and have only had a few minor flare-ups. Here are the findings from the colonoscopy I had yesterday:

FINDINGS: Ileum normal
Inflammatory changes - erythema - focal at cecum, rectum, friability at cecum, rectum, at a distance of 10 cm, erosion(s) at cecum, rectum and loss of vascular pattern at cecum, rectum

The doctor said I had inflammation at the top and at the bottom. He put me on mesalamine and proctofoam.

I was a little confused because I haven't had any symptoms--which really, I guess it quite worrisome. He talked about Chron's but I really don't think I have any symptoms of that.

Can somebody explain what the findings mean?
Posted 2/20/2018 6:22 PM (GMT 0)
Doctors rarely care about symptoms in my experience, their job is to keep inflammation low with RX and prevent cancer. Some people have lots of symptoms and not much inflammation showing and others are like you with low symptoms but enough inflammation for your GI to want you taking RX to lower it.

The Chrons comment is likely related to your non-continuous inflammation pattern.

Others here can explain your results on a more scientific level.
Posted 2/20/2018 6:29 PM (GMT 0)
Sure, I can help translate.

FINDINGS: Ileum normal. In UC patients you would expect a normal ileum. In crohn's disease the ileum is often inflamed.

Inflammatory changes - Redness (erythema) was seen. If you picture a sunburn on your skin, that is erythema and pretty much what they saw during your colonoscopy. Redness is either very, very mild grade inflammation or is caused by your harsh colonoscopy prep. The biopsies say which it was, as prep-based redness would be superficial and affect the surface only, and IBD inflammation would be much deeper. The redness was limited to the cecum and also limited to the rectum. With UC we expect to see continuous inflammation (distal) not inflammation limited to specific areas (focal). With crohn's disease we'd expect to see skip areas where it's inflamed, normal, inflamed, etc.

When the endoscope touched the surface of the large intestinal tissue, it bled when touched (friability) and that is suggestive of inflammation.

The surface of the large intestine had shallow areas where the surface mucosa was notably thin (eroded) and that is suggestive of inflammation.

In someone without IBD, the blood vessels on the surface of the intestinal tissue are orderly and predictable in pattern. With someone with an IBD that patter of blood vessels is chaotic and unpredictable (loss of vascular pattern). This is nothing to worry about, causes no symptoms and is suggestive of past inflammation. This is proof that you are an IBD/Chronic patient as one-time infections do not leave permanent changes to the makeup of our cells.
Posted 2/20/2018 6:38 PM (GMT 0)
So, it sounds like there might be some concern about Crohn's since there are "skip" areas where it's inflamed, normal, inflamed, etc. If I had Crohn's, wouldn't I be more sick? I thought symptoms of Crohn's were diarrhea, weight loss, blood in stool, etc. I haven't had any of these. In fact, I have felt very healthy, other than an unexplained 20-lb weight gain in the last 12 months.
Posted 2/20/2018 6:48 PM (GMT 0)
The more severe it is the more sick you get, yours sounds very mild, which would mean very mild symptoms or no symptoms that you notice.
Posted 2/20/2018 7:05 PM (GMT 0)
Friability is more severe than erythema.
From what I read, both cecum and rectum are affected equally in severity.

There is a form of UC that affects only cecum and rectum.
But you aren't newly diagnosed. When was your previous c-scope, and what was the location involvement of your initial scope and were yiu only diagnosed through sig-scope?

q
Posted 2/20/2018 7:15 PM (GMT 0)
I was originally diagnosed with UC when I was 20. So, that was 34 years ago. I've had numerous colonoscopies. My last one was three years ago, and it was good. I was rather surprised (and now a little worried) about his findings yesterday. I was especially surprised when he talked about Crohn's.
Posted 2/20/2018 7:36 PM (GMT 0)
I'd say you need the biopsies to say for sure. The skip lesion is the one and only Crohn's-like finding, could be completely meaningless if everything else points to an UC. I've heard others here say there is a form of UC with involvement on both ends but nothing in the middle before, never really read-up in-depth with it *shrug*.

If you had crohn's than I would expect deep-tissue damage within the biopsies, I'd expect aphthous ulcers (look like cancer sores) within the intestine: Ileum involvement, cobble-stoning appearance, and any number of other tell-tale crohn's signs. You are devoid of all of those.

Ditto what others said, all of your findings are suggestive of very mild inflammation (erosions and erythema) and is nothing that might be obvious to you or cause symptoms.
Posted 2/20/2018 7:41 PM (GMT 0)
Except the fact you are flaring.

Do you have copies of past scopes? And what is the original location extent of your original diagnoisis?

q
Posted 2/20/2018 8:17 PM (GMT 0)
I don't have copies of past scopes. And, I don't know the original location extent of my original diagnosis. The only thing that I really remember is when I was 21. I had to be hospitalized because I was malnourished, dehydrated, and anemic--from a flare up. My doctor was pretty mad when he did my scope. He said he wouldn't have let me go so long if he had known had bad it was. So, I assume at that time, my whole colon was involved.

I guess I'll just wait to hear about the biopsies--which should be within two weeks. I have an appointment on March 14 in Kaiser's IBD clinic to discuss my care options. And, I have to have another colonoscopy in one year.
Posted 2/20/2018 8:46 PM (GMT 0)
"Except the fact you are flaring."


huh ?
Posted 2/20/2018 8:55 PM (GMT 0)
Well, to my knowledge, I wasn't flaring. They only way I found out was from the colonoscopy yesterday.
Posted 2/21/2018 6:58 AM (GMT 0)
TT....did you miss this part?
"Inflammatory changes - erythema - focal at cecum, rectum, friability at cecum, rectum, at a distance of 10 cm, erosion(s) at cecum, rectum and loss of vascular pattern at cecum, rectum"

That equals flaring....or doesn't it mean that to you?

Am I missing something......clarify for the stupid in me.
q
Posted 2/21/2018 1:12 PM (GMT 0)
my book says inflammation does not equal flare - your book may say something entirely different -

to me, without outward signs and symptoms, it's just inflammation -

honestly don't know what the official UC rules are -
Posted 2/21/2018 1:57 PM (GMT 0)
Inflammation = flare

Doesn't matter how much inflammation you have, a little or a lot, it's still a flare.
Posted 2/21/2018 2:56 PM (GMT 0)

quincy said...
TT....did you miss this part?
"Inflammatory changes - erythema - focal at cecum, rectum, friability at cecum, rectum, at a distance of 10 cm, erosion(s) at cecum, rectum and loss of vascular pattern at cecum, rectum"

That equals flaring....or doesn't it mean that to you?

Am I missing something......clarify for the stupid in me.
q


so Q, let me try this on > when you have to up your meds to deal with increased symptoms, you are having a flare - and the only way to determine when you are done with the flare (assuming meds successful in alleviating symptoms) is to be scoped ?
Posted 2/21/2018 3:06 PM (GMT 0)
Essentially you are talking about this:

There's symptomatic-remission where you think you're in a remission based on your symptoms but it has NOT been confirmed endoscopically.

There's a quiescent/deep/histological remission which is confirmed via colonoscopy and biopsy. Is this scope absolutely necessary after every flare? Of course not, many choose not to get that scope as it is invasive.

We all get occasional maintenance scopes and there's a chance a symptomatic-remission might be a very mild flare when they take a look. Odds are low but it can happen.
Posted 2/21/2018 5:37 PM (GMT 0)
I see the term friable.....not just inflammation....bleeding.

I don't get scoped to prove I'm in a flare....my doc seems to trust my judgement on that.
I have, however, had my past doc confirm with in office rectoscope 3x in 25 years..... my judgement is correct.

Besides...I'm not going to wait till things get worse if I suspect, and encourage others to do the same.
q
Posted 2/21/2018 6:18 PM (GMT 0)
judgement as to when you ARE in a flare ?

cuz i'm talking about judgement in regards to when you are done with a flare = how long after your symptoms leave do you keep taking your meds - it's the assumption that the flare has gone bye-bye when in fact it has not that's in question -

do you in fact still have inflammation even tho symptoms have gone ? how many totally clear scopes have you had in those 25 years ?
Posted 2/21/2018 6:29 PM (GMT 0)
Im hoping not, but my arse tells me soon enough.

Would have count, but I'm sure it's around 13 scopes.
Not all have been totally clear....most mild rectal inflammation, some obvious flaring, one or two no inflammation....except the first 3 were into the sigmoid.

My last scope in past Oct.....deep clinical remission. And may I say it's first time with that conclusion. Doc says....other GI may say go off meds or that I dont have UC if it was first ever visual...he says, it's because of the meds and my use of them.

q
Posted 2/21/2018 8:11 PM (GMT 0)
well, either way, Yay ! the deeper the better, right ?

and while we're on the subject (sorry OP), howz the J girl ? we just lost another one Monday - Dahlia was with us 13+ and was a goof till the very end - now down to 5 :-( !
Posted 2/22/2018 2:53 PM (GMT 0)
Just to add to how do we know.....i suppose it's a crap shoot depending on how much one can perceive and how much one tolerates and how much a doc makes a patient dependent on process of sampling and blood tests to diagnose if one is in a flare or not.

I have no problem using the meds and trust my judgement.....some don't want to use meds, especially rectal, some cannot afford meds and seek alternatives. I've not been in those situations.

J is possibly needing more teeth removed because of resorbtion (will find out at end of next month), and is possibly having hyperesthesia (hopefully only triggered by static)...sigh.
Sad to hear about Dahlia...sincere condolences 😯
q
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