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I had a colonoscopy today...question about results!

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Ulcerative Colitis
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Posted 11/12/2010 3:19 AM (GMT 0)
I had a colonoscopy today and it went pretty good and we decided to hold off on humira until I have a flare that cannot be controlled.  My prednisone is the reason my colon looks that good im pretty sure!

 as far as my ulcerative proctitis goes, I only has mild inflammation with erythema, friability and granularity. However, ususally I just have ulcerative proctitis. Well on my way home I was reading the paper he gave me with pictures and about the procedure and it said that I had mild inflammation chracterized with aphthous ulcerations in the terminal ileum.

I never had involvement in the ileum before. So in his impression section he wrote that I had ileitis, mild inflammation in the colon secondary to ulcerative proctitus and it also says that the findings are compatible indeterminate colitis.

Does anyone know what indeterminate colitis is??So do I still have ulcerative proctitis and just something added on? I know that ulcerative colitis doesn't skip around the colon like this.

Thanks!

 

Posted 11/12/2010 4:40 AM (GMT 0)
I found this quote

Abstract

A diagnosis of indeterminate colitis (IC) is based on endoscopic, histologic, and radiologic findings when the criteria for either Crohn's colitis or ulcerative colitis (UC) cannot be definitively established. Population-based studies have demonstrated that the average annual incidence of IC ranges 1.6 to 2.4/100,000 versus 7.3 to 13.6/100,000 for UC. At the time of initial diagnosis of inflammatory bowel disease, up to 10% to 15% of patients will be diagnosed as having IC. Over time, greater than 50% of patients with IC will be given a diagnosis of UC or Crohn's, with the majority being diagnosed with UC. Therefore, approximately 4% to 5% of all patients with inflammatory bowel disease will be left with the diagnosis of IC. Clinically, patients with IC seem to have a more severe course with a greater chance of colectomy and pouch failure. No studies have been undertaken to determine the optimum treatment regimen for IC. Recent studies have shown that patients with IC are still appropriate candidates for ileal pouch anal anastomosis. In conclusion, the current data support the premise that IC may be a separate entity, but future studies will have to focus on the genotypic and phenotypic characterization of these patients.

Sounds like your showing symptoms of both so it's not certain one way or the other.
Posted 11/12/2010 8:22 AM (GMT 0)
I'd say it'll eventually be clearer as CD.

q
Posted 11/13/2010 4:24 AM (GMT 0)
I had a colonoscopy on Monday and my doc told me he's diagnosing me as indeterminate as well...I had some inflammation in the sigmoid, clear, then a little more inflammation in the ileo-cecal region. I had UC, then Crohn's, now I'm indeterminate....basically my doc has said that as long as I'm doing better with the meds I'm on, it doesn't really matter if it's Crohn's or UC.

My personal opinion is that my doctor doesn't think that I have crohn's but based on the skippage (UC is continuous and doesn't skip), he's not able to definitively say it's UC.

On a somewhat related note...I didn't get any pics or find out any of the "technical" information about my inflammation, and I'm actually really curious about all that kind of stuff. Did your doc give you that stuff and level of detail automatically, or did you have to ask for it? I think my doc might underestimate how much I actually know (and want to know about my situation specifically!).
Posted 11/13/2010 4:34 AM (GMT 0)
  I read somewhere that a person had a test that proved they had UC yet there was patched of inflamation in the colon.
Posted 11/13/2010 5:53 AM (GMT 0)
kelli_c

My doctor gives me a detailed report before I leave the procedure place. It tells me everything on it....everything from how good I did on my bowel prep to what his impressions and findings are. It even shows a diagram on the large and small intestines and has numbers by it that associate with the pictures on the next page.

Also I am alot like you....When I was first diagnosed (2007) I saw a different doctor and I had inflammation in my cecum so originally he said I had crohn's. I switched doctors and had another colonoscopy that only showed severe inflammation only in the rectum. So my current dr said I didn't have crohns I had colitis (2009). So now Im ulcerative colitis in the rectum and indeterminate colitis also I guess it says. Also im being biopsied for microscopic colitis. I wonder if its possible to have crohns, ulcerative colitis and microscopic colitis all in the same colon.

If its possible.....then im sure I could have them all LOL haha
Posted 11/13/2010 1:04 PM (GMT 0)

mom_2 JnJ said...
I read somewhere that a person had a test that proved they had UC yet there was patched of inflamation in the colon.


I don't think you can really ever "prove" either UC or CD.
My blood tests showed UC, my pathology reports showed UC, yet once my colon was removed, I began to have inflammation in the small intestine. No one is still sure whether I have CD. My GI explained that there is more than UC or CD, but no one know enough about these diseases so everything gets lumped into either or.
Posted 11/14/2010 12:00 AM (GMT 0)
I had some patchiness when I had my last colonoscopy however my doctor said he was pretty sure I have UC based on the fact that my ileum was clear and that I didn't have granularity. So, I'm thinking maybe your doctor thinks you have Crohn's. :o(
Posted 11/14/2010 1:11 AM (GMT 0)
Thanks everyone for your responses. Right now my GI is just labeling it as indeterminate colitis....but I read on the internet that aphthous ulcers found in the terminal ileum is the early stages of crohns. Im not going to worry about it until I see him in 4 weeks. He has me tapering off my prednisone and usually I do good until about 10-15 mg. The thing is I am only on prednisone and proctofoam right now and he wants to taper me off pred. Im wondering what his next step is....it was supposed to be humira but he wants to hold off on it because the prednisone has worked and made my inflammation mild. I guess hes waiting to see what the biopsies say before he tells me what he thinks we should take. If he thinks Im not going to be on anything at all....all I can say is hes crazy LOL
Posted 11/14/2010 5:28 AM (GMT 0)
lovemyboys09,

You are right that aphthous ulcer found in the terminal ileum is characteristic of Crohn's and not UC. By anatomical definition, ulcerations involving the ileum cannot be indicative of ulcerative colitis as the ileum is the last segment of the small intestine and outside of the colon (the colon is the large intestine). It is important to know that you have inflammation beyond the distal colon as suppositories and rectal foams/enemas will not reach the ileum so you will need some form of treatment that will address this inflammation adequately. As you taper off the prednisone, the inflammation of the ileum will no longer be addressed. Quincy is probably right to say that it will probably lean more towards Crohn's but the diagnosis of "indeterminate colitis" is mostly an academic term that is saying that your disease has characteristics of both UC and Crohn's. It is very important that you have other means to control the inflammation beyond the proctofoam.

34 yo male/physician
In remission from UC (pancolitis)
SCDiet/VSL #3 DS
Posted 11/14/2010 5:57 AM (GMT 0)
Before we did the colonoscopy last thursday, both my GI and myself had no clue that it would show ulcers in the ileum. He had mentioned that we could try entocort (sp?) but it was mainly used for crohns and not colitis . Maybe that is something that he will look into to treat this. All I know is that I don't want those ulcers to get out of control because they can eventually cause quite abit of issues.

5ASA don't work, serum sickness reaction to imuran, remicade didn't work, canasa never worked......Even though I use proctofoam I don't notice much difference.

Prednisone is my best friend and my worst enemy put together in a little pill :)....but it is the only thing that works (thats why I was pred dependent for 8 months last time) This time I have severe stomach pain above my belly button and my GI thinks its being caused by the prednisone....so taking 20 mg of omeprazole (not working). Can't eat meals only a couple bites of stuff at a time or I vomit.

looking online for other prescriptions to try. Sometimes the internet is better than asking my GI because I see a whole bunch of opinions not just 1. Plus Im better informed to discuss things with my GI. My family practice doctor told me I know way more than him on this disease.

Posted 11/14/2010 8:47 AM (GMT 0)
ugh just ugh...one doesn't have to have ileum involvement to be diagnosed with CD...Crohn's colitis can be limited to the colon only and mimic UC until its involvement goes deeper into the colon wall.

q
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