Ulcerative proctitis

Hello everyone,

I've been diagnosed with UP for 2 years now. My doctor says a colonoscopy is not an urgent thing to do, so I suppose she considers that the lesions are confined to the rectum only.

I have little symptoms since I have been on daily rectal Pentasa administration. But is it safe to say the disease is mild and not widespread?

I only use rectal Pentasa. I'm just unsure about the diagnosis without performing a full colonoscopy...

Is it possible to find lesions in the rectum and then other disperse areas along other parts of the intestine?

I'm a little confused reading your post. Why would you need a colonoscopy now? They're typically used for initial diagnosis of UC, during flares to see what the heck is going on, and for long-term colorectal cancer screenings (after 8-10 years after diagnosis).

2 years ago, were you initially diagnosed with UP is it safe to assume it was through a full colonoscopy at that time? If yes, then there is no need for a repeat colonoscopy after only 2-years time. If you need another scope for diagnostic purposes during a flareup then a repeat colonoscopy is kinda overkill for an UP case, as a flexible-sigmoidoscopy would go far enough, as would an rectoscope.

The two terms that are used to determine how bad your UC is, are the terms Extent and Severity. You know the extent of your UC, it is Ulcerative Proctitis, which includes only the rectum and that is the mildest extent of UC one can have. We do not know your disease severity exactly. We can assume it was mild/moderate if only Canasa suppositories are used now. That said UP cases can be severe and require biologics like humira

Well, I am just as confused as you are, so I'll have to defer any further replies to the senior members here with more experience.....this is my understanding of the word 'quiescent' :

qui·es·cent
kwēˈesnt,kwīˈesnt/
adjective
in a state or period of inactivity or dormancy.

So, seeing 'moderate inflammation' and then 'dormancy' describing the same area of UP, I guess this must mean that there aren't any visible ulcerations maybe?

See, I just don't know anag26.....sorry I can't help more. I will say this though, my recent colonoscopy showed 'quiescent IBD' as well----and my doctor actually stepped my meds up rather than decreasing them.

I'd been taking Pentasa twice a day and for now she wants me to take it 4 times a day (but I am slowing the rectals down to every other). But that could be due to where she saw the inflammation, too?

My doctor seems to think any inflammation is bad inflammation.....but gosh, all doctors seem to have their own protocols. Maybe speaking to your doctor right now would be the best way to get this figured out. Have you called or emailed your doctor about this yet?

Good luck.....I know how frustrating it can be !

I'd definitely recommend getting a copy of the flexible-sigmoidoscopy reports and biopsy reports and doing a double-check on what was actually said. The statement "mild to moderate inflammation, compatible with quiescent IBD" makes no sense at all. It's like adding an unexpected "2" into a binary system expecting only "1's" and "0's" as possible results haha. What I'd expect to see is a statement like "mild to moderate inflammation, compatible with IBD" or I'd expect to see a statement like "Inactive, quiescent inflammation IBD" but not a combination of the both. You can either have active inflammation OR inactive inflammation in a single biopsy but not both. It is possible they are saying some biopsies were quiescent and some showed active inflammation, as there's always a number of biopsies taken *shrug* that's the best I could gather. In that situation, some areas (those higher up) have healed and you have just some lingering inflammation closer to your end, and that would definitely be an improvement over your prior scope but not a true remission.

Hmmm so you've never had a full colonoscopy? Now I see why you asked the initial question then! With UC patients, like ourselves, it is certainly best to have a full colonoscopy and make it all of the way to the ileum and make sure there are no other signs of inflammation elsewhere in the large intestine, and even do a slight peak into the small intestine to make sure it is in fact all clear of inflammation. Why? To rule out Crohn's disease which often involves skip lesions (that is patchiness, where there's inflamed areas, followed by healed areas, followed by inflamed areas) and inflammation within the ileum (where the large intestine and small intestine join). They also want to rule out other less common IBD variants including Indeterminate-Colitis and Crohn's-Colitis which are the gray areas of diagnosis between storybook cases of UC and storybook cases of Crohn's disease where somebody who has features of both simultaneously.

I'd say it'd be in your interest to get a full colonoscopy down the line, but with rectal involvement there's a pretty solid case for UC. Crohn's doesn't typically have rectal involvement, so it's generally ruled out based on what they saw. It pretty much comes down to: Are you a case of Indeterminate-Colitis or Crohn's-Colitis? which are a lot less common and a colonoscopy would rule those out or confirm one. We do have a few regular posters who are Indeterminate-Colitis or Crohn's-Colitis cases, so they are definitely out there. With those, you could have rectum inflammation and there could be a skip lesion and more inflammation further down the line, say in the transverse colon, and another skip lesion within the ascending colon, which are areas beyond what your flexible-sigmoidoscopy could have seen (flex-sig is left-side only, up to the splenic-flexure). It is possible in those cases. Given a colonoscopy isn't the only way to diagnose those as XRays, MRIs, pill cams, and other techniques can also point to inflammation higher up.

What makes you think you have inflammation higher up? Are symptoms now just worse than your initial symptoms were? Do you have pains in the right side (ascending colon) or transverse colon (horizontally from left side to right side across your belly button)?

First off, I'd go back to your safe dose that was working for you before and contact your gasteroenterologist to tell him/her about your symptoms. I'd ask whether a scope is warranted.

A stool test for possible pathogenic causes to your worsened symptoms is often a good idea, as well! Nasty things like c diff can be a cause...

Could be trapped gas or stool. It happens.

Firstly....if you haven't had a full c-scope, insist on one with biopsies throughout.

Ask for stool sampling to be done since diarrhea is a new symptom.

If you don't have a copy of your initial biopsies pathology report, get it.

You cannot assume anything on an initial diagnosis without knowing what's going on in the rest of your colon....especially if your cecum has involvement. Then....you arent on full coverage meds.

Your symptoms under the belly button sound like gas or spasming. Diarrhea says something is going on considering your initial diagnosos of proctitis. But, in saying that....what is the location extent of your UP? Inflammation happens in increments of severity, not all inflammation causes fragility of tissue to cause bleeding. You don't mention bleeding.

Mild to moderate inflammation is NOT quiescent. Get results of those pathology results asap.

Are you doing the Pentasa enemas nightly, and what is the dosage...1g, 2g, 4g?

Absolutely get another opinion.

q

Since she is a friend, get copies of all your test results. Biopsies pathology results.

As a friend, what is it she is doing for you as a favour?

At the very least, you should be on enemas....not suppositoies if she's chosen that for singular treatment. Ask for higher dosage and do them nightly....i base this on common sense.

Request a full c-saope in a year.

Request to be put on an oral mesalamine as well.

Request stool sampling.

As a friend, she should be over and above regarding treatment...obviously she should be able to see contradiction between moderate inflammation and quiescent UP.

If she's a friend, you should be able to ask her questions and get the answers. If she refuses to look further she's only under the impression of doing you a favour...or you are lowering yourself to her doing you a favour.

Being proactive shouldn't be an insult to her considering it's your butt.

Lastly...did she take biopsies? And how old are you if you are OK to answer it?

q

This friend, is she a gasteroenteroligist-specialist doctor?