UCers re-dx'd as CD years after colon removed

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Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 10/21/2007 8:03 AM (GMT -7)   
To branch off from the thread on surgery curing UC, I have been spending a fair amount of time on the jpouch.org forum to learn and mentally prepare myself for what now seems inevitable, because I am chronically flaring and pred-dependent and fed up with my UC's effetc on my quality of life.  But I have noticed a number of people on that forum have their colons removed and get a jpouch, only to later be dx'd with CD of the pouch some years later (sometimes 10 years later). 
 
Now, I realize that diagnosis remains a fuzzy science for many but this mis-diagnosis/re-diagnosis thing worries me. My own UC has been considered indeterminite (i.e. possibly crohns colitis= CD restricted to the colon) by more than one GI, but on balance (including the last two scopes) they lean heavily towards it being UC.  If (I guess when) I go for surgery I would prefer to try for a jpouch and only if I have bad function without improvement, go for the permanent bag.  But I have several questions:
 
1. if there is dysplasia- certainly more than low grade (and possibly even with low-grade), it doesn't really matter if it's truly UC or CD, the colon still has to come out, right?
 
2. but if it "really" is CD, wouldn't it be better to skip trying to have a jpouch and go straight to a permanent ileo? (Because, presumably, the jpouch would probably be doomed to have CD later down the road.)
 
3. if it is "probably" UC (but with a slight amlunt of doubt) is it then worth gambling going for the jpouch and just dealing with it down the road if it turns out it was CD all along?
 
4. before making surgery decisions, is it not wise to try hard to further narrow down the diagnosis - eg using those PANCA tests and/or using a capsule endoscopy to check the small bowell or something (no inflammation past the ileo-cecal valve visible in colonoscopies, and no extra-intestinal manifestations of disease), even though the tests are not that definitive?
 
Anyway, thanks anyone for reading this far and for any thoughts.
 
Christopher
Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering ever since
10 20 mg pred, 100 mg Imuran
Probiotics (mainly Primal Defense)
Turmeric/circumin, various vitamins/minerals,
Low-carb version of Specific Carb Diet
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5697
   Posted 10/21/2007 8:30 AM (GMT -7)   

Yes, this happens because there is no definitive test to rule Crohns out.  My own GI felt I had Crohn's but my surgeon thought otherwise and pathology on the colon after surgery indicated UC.  Does that protect me?  No it does not. If you have Crohn's-colitis you are still a good candidate for a j-pouch.  If you have CD you are not.  To answer your questions:

1.  In my opinion, yes if you have dysplasia the colon should come out regardless of your IBD diagnosis.  There are many who would argue that dysplasia can be misdiagnosed.  I'm not much of a risk taker so that would be enough to sent me to the OR.

2.  If it is CD your surgeon will not perform a j-pouch but will do a permanent ileo.

3.  That's a choice you have to make.  There are several CD j-pouchers on the board who are managing their CD quite well with a j-pouch and have no current plans to have additional surgery.

4.  There is no science that can accurately determine which disease you have.  My surgeon (one of the best CR surgeons in the country, a researcher, and a doctor who has performed over 2000 j-pouches) would be the first to toss out the Prometheus tests.  He was able to show me how their testing procedures were flawed.  In my case the PANCA results indicated I would have chronic pouchitis, my surgeon said that was not so and in 7 years with a j-pouch I have never had pouchitis.

I think your next step is to consult with a top CR surgeon and pose these questions to him or her.  You are obviously well read on the subject and are ready for a informed discussion on the pros and cons of your situation.  Ask your surgeon if he/she has any pouch patients who were later diagnosed with CD.  Ask your surgeon for references of his/her patients to talk or meet with. 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 10/21/2007 8:43 AM (GMT -7)   
Thanks alot for some good advice, suebear. Your history is a bit like mine in many ways- it seems a very long and solid remission can be followed by just as stubborn and vicious a relapse. Will pose all these questions and more to some CR surgeons.
Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering ever since
10 20 mg pred, 100 mg Imuran
Probiotics (mainly Primal Defense)
Turmeric/circumin, various vitamins/minerals,
Low-carb version of Specific Carb Diet
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/21/2007 10:38 AM (GMT -7)   
I have crohns-colitis and spoke with my GI about a J-pouch...he told me that it wasn't commonly done unless the colon was pretty much hamburger and needed to be removed, because having this procedure done obviously at some point CD will affect other areas in the GI tract since with CD it can affect anywhere from the mouth to the anus.

Then again, have crohns-colitis only doesn't stop the disease from progressing to other areas anyways, heck, when I first got DX I had it in my ileum, colon, rectom and anus all at the same time.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 10/21/2007 10:50 AM (GMT -7)   
Hi pb4,

Hmm, interesting that your crohns retreated into just the colon. I have never had any UC (or CC if it is) symptoms outside the colon.

So, from your research, even if crohns colitis has been restricted to the colon alone for decades, and you remove the colon, then it suddenly starts to spread to other parts of the body? As if somehow, as long as there's a colon there for it to savage, it is content to stay there? This part confuses me.
Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering ever since
10 20 mg pred, 100 mg Imuran
Probiotics (mainly Primal Defense)
Turmeric/circumin, various vitamins/minerals,
Low-carb version of Specific Carb Diet
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/21/2007 11:56 AM (GMT -7)   
well with crohns it's a little different because of the fact that it can affect the entire GI tract from the mouth to the anus, that's why removal from any area will leave other areas at a higher risk of disease development...but with UC only affecting the colon and rectom, removal of those 2 areas is considered a "cure" as far as inflammation and ulcers are concerned, that doesn't mean that UCers still won't suffer extraintestinal manifestations either.

Like I said, for me it's affected many areas at one time, and although it's remained constant in my colon and anus, it does come and go in the rectom as well for me, I've just been lucky that it's somehow stayed clear of my small bowel.

And each situation is different as well since IBD is a very individualistic disease, many decade long sufferers of CD have never had their colons or rectoms affected, it's just simply the nature of the beast.


:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)

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