Confused about diagnosis.

So I'm on the long list with my doctor. He'll only see me every 3 months, unless I have problems. He doesn't like I'm on LDN. I can understand though, because there isn't enough studies to prove it's successful.
But he keeps saying, 'No one knows for sure if they have UC, C-C, or CD."
He says that I have tissue that shows I can flare again, through pathology. Something colasal colitis? I didn't get the right spell - again, he was busy.
With me, I'd like to know what I have. Does it sound like crohn's? My last scope, in September, showed some chronic inflammation in my rectum. But nothing in my upper region. No patching. That's when I was having trouble with Imuran (had to go on and off of it for months), on a low dose and starting to get symptoms backs because of it.
He won't scope to see if LDN is working, unless I get symptoms again. I feel pretty normal. I have founds, since I had food poisoning more than a year ago, that I don't go the bathroom everyday. Usually every other 2-4th day. Depending on what I ate. But that's stayed the same since going on paleo. I just thought it's because I don't have a lot of fiber in my diet that slows me down. The stools are normal, no constipation forming.

I just don't know what to think.

Post Edited (Sibby) : 3/9/2013 10:48:10 AM (GMT-7)

Crohn's is patchy inflammation regardless of what area in the GI tract it's affecting. Lot's of good docs can properly DX based on the type of inflammation and location and things like perianal crohn's disease which a good doc will recognize them being different than hemorrhoids. There's enough clues/differences that can lead the good ones to a DX.  Yours doesn't sound like crohn's at all based on the info you mentioned.

I always worry that my diagnosis is inaccurate as well. I trust my GI, she's amazing but in the past, I had one scope elsewhere that showed "patchy inflammation". It is possible it was patchy because I was using rectals but it worried me. I also have fissures and I believe they are more common with Crohn's. I don't know how we can get over this worry. Perhaps an endoscopy may help, if we have inflammation in the small intestine, that would be definitive. I guess I've learned to accept that I am feeling well and I am thankful that things are under control. Hopefully things stay this way and whatever it's called isn't too important if I am not having symptoms.

re: Crohn's being 'patchy'. I think you mean it has what doctors call 'skip lesions'.

I am confused about my Dx too. My Biopsies are +ve for UC, but my bloodwork is -ve for UC.

SMH

I have to find the report. I had a copy back in September. Only showed inflammation in the rectum.

All he said was that the tissue wasn't healed, but looked like it was scope wise. The biopsy showed that the colitis could flare up. He said only Remicade could get that tissue 'back to normal.' I do have some scarring because of the severity I had. And that made me question my original diagnosis, because I thought UC doesn't go deeper into the tissue.

Originally he said I only had left-sided UC, then late last year he said I had pancolitis, by biopsy, but not by scope (seeing it on the lining), because the visible inflammation stopped at the top of the descending colon.

I just keep on going back and forth in my mind because he keeps on flip flopping. He doesn't give me direct answers.

He doesn't want to scope me until I get my symptoms back.

Hi Levi..not from what I read on this forum...some having the test over and over and over with different results. It's not 100%. But anyone with ileum involvement without it being backwash from pancolitis...seems it would be CD at a guess.

Hope yours stays where it is and that you're doing well


q

UC can go as deep as 3 layers...mucosal, submucosal, lamina propria (usually the singular ulcers). Maybe that's where the confusion can come in regarding the depth....CD in early stages when it mimics UC.

q

A crohn's diagnosis can be definitive because of the presence of certain symptoms that are never present with U.C. such as deep inflammation, fistulas, cobble stoning, granulomas, skip lesions, inflammation outside the colon, and strictures. A U.C. diagnosis can never really be 100% definitive because it is always possible that it is Crohn's that is showing a U.C. pattern (continuous shallow inflammation). My doc mentioned that sometimes uneven sparing from medication can lead to a pattern that looks somewhat discontinuous in U.C., but biopsies will show inflammation in the healthy "looking" areas in U.C., but not Crohn's.

Re: the Prometheus blood test to differentiate between UC and CD, of course I wish it were accurate too, but even Mayo and CC no longer order or even consider results of that test as they feel it's so inaccurate as to be worthless.