4 Years later, a second diagnosis

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DarrylP
Regular Member


Date Joined May 2006
Total Posts : 214
   Posted 4/9/2010 9:44 AM (GMT -7)   

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.


 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/9/2010 9:47 AM (GMT -7)   
So many of our members are diagnosed with UC when they really have Crohns. Yours is the first where it really is the other way around. Just hope that all gets figured out for you and you can move forward. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

DarrylP
Regular Member


Date Joined May 2006
Total Posts : 214
   Posted 4/9/2010 9:53 AM (GMT -7)   
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.
 


chatter
Regular Member


Date Joined Oct 2009
Total Posts : 51
   Posted 4/9/2010 11:39 AM (GMT -7)   
I have been diagnosed with CD after 28yrs and many major ops later, previously diagnosed with UC. Just about to go for a scope on 13th to see the state of play. had a flare over the last fortnight but now it has settled mainly. Still having some signs of sub-acute obstruction, terrible wind, awful noises, bloating etc.

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 4/9/2010 12:09 PM (GMT -7)   
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?

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 4/9/2010 12:12 PM (GMT -7)   
Also, I question the claim that imuran doesn't work as well for UC as for Crohn's. Maybe, maybe not. And even if it *is* less effective for UC than for Crohn's, it's still effective for many people with UC.

But you're tolerating it very well, and based on your scope, your condition is in good shape, so why mess with things and stop the imuran?

DarrylP
Regular Member


Date Joined May 2006
Total Posts : 214
   Posted 4/9/2010 2:54 PM (GMT -7)   
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.
 


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 4/9/2010 4:13 PM (GMT -7)   
Adding a 5-asa to Imuran usually doesn't exacerbate any liver issues, ie, if your liver is OK with your dose of Imuran, then adding a 5-asa probably won't stress your liver that much more. Some do feel there is a synergy by using the two together, but studies on that are limited and equivocal.

DarrylP
Regular Member


Date Joined May 2006
Total Posts : 214
   Posted 4/9/2010 7:24 PM (GMT -7)   
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
Current Meds: 250mg/day Imuran
Current Vitamins: Multi-Vit, Calcium, Vit-D, Fish-Oils, Flaxseed Oil
Current Status: Mild Symptoms but under control
 
25 year old gym-rat/engineer
 


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 4/10/2010 12:28 AM (GMT -7)   
Congratulations on a Dr. who does his work well Darryl, you must feel a bit more secure in your treatment now. Must be nice, Enjoy!
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 4/10/2010 4:46 AM (GMT -7)   
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:)
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 4/10/2010 3:29 PM (GMT -7)   
Darryl,
In general you're wise to listen to your doctor and not some random person on the internet.  But also, don't underestimate the knowledge of some of those random people.  They might just know more than you think.  And don't overestimate the knowledge of your doctor; I know plenty of GI's who are clueless on many of these issues.
 
The literature lists that possible side effect because it was observed in vitro, ie, in a cellular-level lab test.  It has not been observed in patients, to my knowledge (and if it has, it's a very rare side effect).  You said "If the drug company has posted it, it means its happened."  But that's not always true.  They'll list side effects that haven't been reported or observed but are *hypothetically* possible - anything to say, hey, we listed it, so we're not responsible if it ever does happen.
 
Do you realize how many tens of thousands, if not hundreds of thousands, of people are on imuran and a 5-asa concurrently?  My brother is one of them.

Post Edited (beave) : 4/10/2010 4:33:17 PM (GMT-6)


DarrylP
Regular Member


Date Joined May 2006
Total Posts : 214
   Posted 4/10/2010 6:00 PM (GMT -7)   
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.
Current Meds: 250mg/day Imuran
Current Vitamins: Multi-Vit, Calcium, Vit-D, Fish-Oils, Flaxseed Oil
Current Status: Mild Symptoms but under control
 
25 year old gym-rat/engineer
 

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