Biopsy positive for colitis negative for UC

colitis is usually caused by something and can be cured. It could be a parasite or a pathogen, something environmental... At the same time, it could ultimately lead to something else. You really never know. I was initially diagnosed with proctitis, which is not AI, and eventually it got worse and my diagnoses changed to UC. There is really no guarantee of anything. If it's colitis, i would think there is the chance there is a test that can find the cause. Be diligent, look for answers. If it's curable, you want to get it cured! Have you been prescribed any antibiotics?

the cause of the colitis needs to be identified. colitis is not autoimmune.

I have not been prescribed any antibiotics . My doctor didn't seem to think of finding a cure now . He is just going to continue what we are doing. I have been having symptoms for 2 years . Bleeding flare ups daily lialda , prednisone. If I really had just colitis wouldnt it have gone away by now ? Should I get another biopsy and see what it says ?

Yes I had a few stool samples done in the last 2 years . If I get another biopsy I guess that will answer it. Can you have chronic colitis ? I guess that's what it would be . He said he has more uc patients than colitis pat , but his colitis patients seem to have less severe symptoms . I forgot to ask he they have more remissions or go into full remission . I was hoping someone would have some experience in this . I might get a second opinion

Having "active inflammation" is very non-specific and could be anything. Often the words active inflammation includes an important "likely from" statement with words like colitis (meaning infectious) or chronic-colitis compatible with IBD (or it might say UC). Yours does not, so the technicians analysis of the biopsy slide did not assess it, weird.

There's nothing ulcerative colitis related within there. With UC we always have crypt abscesses and you have none. There's no mention of permanent architectual changes to your intestinal cells in the report.

A diagnosis is never based on only one data point like this biopsy report, but there's nothing in that screaming UC.

That's interesting.. I was questioning my GI because of the likely infectious colitis diagnosis (still waiting biopsies) but I was thinking infectious colitis wouldn't stick around this long, but 2 YEARS of colitis and no changes in the mucosa like you would see in UC that's very strange! If I were in your shoes, I'd probably continue with whatever treatment GI is suggesting but certainly if you do not see progress in a timely manner I'd demand further testing.

Quincy is quite picky with semantics lol. Yes anus wasn't the best choice of words (my bad), should have said beginning of rectum or sphincter.

Uc has crypt involvement during active inflamation and often crypt abnormalities even when in a remission.

During active inflammation, our crypts are often filled with junk (known as crypt abscesses) composed usually of immune cells like lymphocytes. We can have crypt inflammation, known as cryptitis.

During remission our crypts often look weird. Things like crypt dropout (a crypt opening closes and an empty pocket is left inside), weird crypt branching (instead of a single crypt valley from an opening we have multiples or many from a single opening), and often the goblet cells within crypts are destroyed. Those findings are unique to UC.

During remission my biopsy reports have shown crypt branching and dropout. During flares my biopsy reports have noted cryptitis and crypt abscesses.

Yes, this seems possible to me. If you were in very early stage of UC.

The report also said negative for uc ,positive for colitis . My doctor said that that is what he is going with colitis . Not uc , but said I should think about having it redone . I am willing to do that if I need to . He says it's up to me because He would treat it the same .

Hi Joe,

I have a similar situation. I am really happy you posted this question, as it has given me a good outline to talk to my doctor about on Tuesday. I am going to push for a stool sample now.

My first scope with biopsy from 2008 says:inflammation and friability and irritation of the mucosa consistent with proctitis (it mentions this is 15cm) then final DX after biopsy: proctitis acute cryptitis

Then the one this past Oct. says clearly mild proctitis visible from sphincter up 15cm/ inflammation includes a few superficial erosions then final DX after biopsy says: sections containing cryptitis with acute inflammation within the lamina propria. No definitive crypt abscess formation seen/ colonic crypts show some slight distortion of normal architecture/ etiology uncertain/ diagnosis mild acute proctitis/colitis. No dysplasia or malignancy noted.

Based on all the replies in your post, I am going to push to find out what this etiology is. My doctor went as far as to tell me at my last appointment a few weeks ago that nothing I can do will change things for me, as what I have in an immune system issue. (I was asking about diet, probiotics, etc) .

Well.....that isn't the diagnosis I see here at all. It seems he would flat out say UC if it WAS UC. And instead it is being called acute proctitis. That means.....I am incredibly perplexed as to why there has been no stool sample ordered and never even any antibiotics prescribed !

I may ask for a new GI....I have been in this flair now for 15 months and it upsets me to think that a stool sample might reveal a pathogen that a short course of antibiotics may be able to clear it up !!!

Good luck on getting this all figured out.....it can be really frustrating.

EDIT: I have been using mesalamine enemas and oral pentasa for 6 weeks and every time I stop the enemas symptoms return the following morning. I am going to ask for the same meds you are using.

Post Edited (ArtsyFartsy) : 5/12/2017 2:42:36 PM (GMT-6)

Thanks, NSSG......what's even stranger is that I was not asked for a stool sample in 2008 either. Maybe this GI just doesn't like poop?

I am actually going to insist on it , in a really nice and sweet way as he is a man of few words and doesn't enjoy being questioned in a way that he thinks is challenging.

Do you think the fact that I have had symptoms for 15 months (even now after 6 weeks on 5asa) combined with this last biopsy showing slight architectural changes and superficial ulcerations would render the possibility of some sort of an infectious agent being unlikely?

I just have this strange feeling that something very important is being overlooked. And I even felt that way in 2008. Like he just isn't thorough and doesn't give 2 hoots......

Now, I will say that I was diagnosed with discoid lupus in my 20's (I am 50 now) and all of a sudden I have been experiencing some other issues like butterfly rash, joint pain,Terry's toenails, chronic sinusitis, and a few others that are concerning.

I had a plethora of blood tests last week and results will hopefully be ready by my appt. with GI on Tues. Maybe this is all connected? maybe even my colitis problem?

Yeah, I guess great minds think alike?

I was actually wondering if this was a candida issue. And also a food allergy scenario and planned to ask my primary to get those test run, as well. I could be dreaming here, but it would go a long ways towards minimizing my "google searches" and studying new solutions 24/7.....if I could eliminate these other things as possibilities...

And for sure my partner would appreciate it, lol. I am obsessed and have been for awhile.

I don't want this is be IBD related. I want to see everything else ruled out PROPERLY. And here's another scary thing.....my proctitis/colitis involves most of my rectum. Yet his first choice in treatment this time around was ONLY oral pentasa !

Thank goodness for quincy and this forum......(thanks quincy).....because after lurking here a long time I realized that that particular med wouldn't REACH my rectum very well. I personally called and asked for the enemas and he agreed to that.

Then at my last appointment a few weeks ago, he told me to stop the oral meds and just keep up with the enemas (like those were HIS idea to begin with, lol). Just not very sound.

I decided to not let him get away with it and asked him why in the world he would only prescribe something that would be barely allowing 20% to reach the inflamed area......he then said "oh, but oral meds DO go systemic" and I said "about 20%".....he stuttered and said "yes maybe" under his breath.

He didn't like my questions and in that moment I lost a lot of faith and began wondering what else may be in question with my treatment. And then THIS post came up and now I am sure he has been less than stellar.

I am so sorry OP about hijacking.....but as a vigorous reader of these threads, maybe what my situation is and yours play nicely together for future readers? I hope so.....I didn't mean to take over !