4 Years later, a second diagnosis

So a little while back I had posted a thread about how my new GI basically questioned everything my old GI did on the fact there was large gaps of missing information in my file that should normally be collected with Crohn’s (DEXA Scan’s, which I never got done once, Pathology reports, etc.). My new GI also questioned my old GI’s quick use of Prednisone for the first time I was diagnosed without using a remission drug such as Imuran to keep my Crohns under control post-Pred.

 

So since then I have gone through a entire blood panel, DEXA scans, full colonoscopy and gastroscopy (Spelling?). These were all done at the beginning of March, so my appointment was made for early this week to ensure the pathology reports were back before I came in.

 

So here is the o’ so funny conclusion, my diagnosis may actually be UC and not CD. Pathology reports found no Granuloma’s and no celiac, currently my WBC on 225mg/day of Imuran is a comfy 7.0, my inflammation markers from my blood tests show me as actually being near the bottom of the normal range (AKA pretty much no inflammation), my Vit B levels are almost at the very top of the normal range (around 530 I believe so in fact my Vit B levels may be a little higher than the average person since i am near the top of the scale) and my DEXA scans show me as being in the lower portion of the normal range for my age group, which while in the lower portion is still deemed “healthy and normal” which is not bad for have being on Pred 3 times in the last 4 years.

Results from the scope were that my GI found zero signs of inflammation in the ilieum, and slight red patchy spots in a couple spots of the colon, but nothing more than extremely mild, almost not noticeable.

 

Wishing I went for that second opinion a while ago, this changes things a bit….also apparently Imuran doesnt work nearly as well on UC as it does on CD, my GI things ASA, which has less side effects than Imuran, may actually work way better for me than Imuran. Imagine that, a milder drug would be more beneficial to me, lol.

Well i did find it odd that my first GI diagnosed me with CD as soon as i woke up from my first ever colonoscopy, turns out he never got any biopsies processed to support his findings.

DarrylP,
Keep in mind - and maybe even remind your doctor! - that not finding granulomas in your biopsies does not mean that it has to be UC instead of Crohn's. Yes, finding a granuloma would mean Crohn's, but not finding one just means, well, they didn't find one. Maybe if they'd taken more biopsies they would have found one, or maybe if they'd biopsied a different area, or maybe you have Crohn's but no granulomas. See what I'm saying?

For the mean time i am not switching drugs, apparently 5-ASA creates  an enhancing effect on Imuran, meaning it would be like me suddenly taking a whole lot more, which wouldnt be very good for the liver.

As far as no granulomas, i am aware that they dont go hand in hand, but he did take 12 seperate biopses throughout my colon and ilieum and pathology found none, so i am pretty sure its not a case of they picked the wrong 12 spots.

I may still have CD, but he definitly feels that its most likely UC, not CD that i am suffering from, for the time being i will trust him on his diagnosis, he has been a million times more accomodating and thorough then my old GI, so i trust he knows his stuff.

I trust the pharm. companies side effects list, says right under drug information for 5-ASA
"Concurrent use of 5-ASA and 6-mercaptopurine or azathioprine (Imuran) may increase the likelihood of blood disorders. "

If the drug company has posted it, it means its happened, so honestly, i would rather not take the risk of getting a blood disorder when i dont have one at the moment.

Don't take offense to this, i am not discrediting your views, but my GI went to medical school for how ever many years doctors go to school (up to 9 years if specializing i believe) so if he is the specialist i will take (to a certain degree) what he says as the way it is, so if taking 5-ASA is a bad idea in his knowledge, then i will take him for his word.

I am a Electrical Engineer specializing in the design of Power Systems, if i tell him that a transformer has to be built a certain way so his lights stay on, i am pretty sure he would take my word for it over making his own guesses, LOL

DarrylP~In your original post the part about 'patchy spots in a couple of spots' jumps out at me. Crohn's is intermittent, even in the colon, which brings on the term Crohn's Colitis:( UC wouldn't have any patches of healthy colon in between.

Just another set of eyes looking at this...and I am not a doctor...but wanted to mention it. I hope you continue to have good results:)

OHIO76,

I might have used the wrong words with the patchy....it wasnt patchy just some sections were just a little more inflammed then others, bad choice of wording on my part, he said the lower part of the colon was a little more inflammed to be exact, so there was parts of it that were worse, it wasnt zebra striped with disease and clean parts down the length, there was just one section, the later part of my colon, that was a little more inflammed.