Risks of UC colectomy leading to Crohn's dx later

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Probiotic
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Date Joined Mar 2007
Total Posts : 2832
   Posted 1/19/2009 9:18 PM (GMT -6)   
I have heard that up to 7% of UC patients who get a colectemy later turn out to have Crohns after all in spite of the "beyond reasonable doubt" determination that they had refractive UC.  My UC is certainly not 100% definitive and they tend to say they are only 90-95% certain.  I was told that if you are a lucky lottery winner who gets the colon removed and then later turns out to have Crohn's after all (manifesting as Crohn's colitis when you have a colon but spreading to the small bowel and elsewhere once the colon is no longer the available punching bag), that you can end up right back where you started - on prednisone etc. but now without a colon.  So my question is, what the heck is one to do if you have refractive "probably UC" and are prednisone dependent?  I don't know what to be more scared of if it can't be definitively assessed as UC... having the surgical "cure" option denied me or doing it and being worse off than when you started.  Sounds like a true rock and a hard place situation.  The prometheus test showed me 95% certain as UC also but that test is completely dismissed as next to useless by two separate sets of GI's who I have consulted with.
 
 


Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm, TSO again
Turmeric/circumin, boswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 


RobinByrd
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Date Joined Dec 2008
Total Posts : 511
   Posted 1/19/2009 10:36 PM (GMT -6)   
I think it's very scary...the idea of surgery and possibly not getting the 'cured' result as hoped for. I think about that too. However, my GI says I have a classic case of pancolitis. Because Crohn's affects the tissues of the colon on a deeper level I would hope that a trained specialist could see the difference of the sores and yuckiness in our colons versus those of a Crohn's patient. That's just my opinion...but I'm not a professional and have zero experience looking at colons. : )

I think it's just a risk you must be willing to take...the surgery with the possible Crohn's Dx later. I can't really think about that too much right now b/c I'm ready for this colon to be gone. I'll deal with the later Dx and situations as they come. We're doing what is best for us right now, and that's for me to get on with my life and not allow UC control anymore.

Anyway...you bring up an excellent point...I think it's very sad that these two diseases still are often confused and some are misdiagnosed and mistreated.

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!


bbc
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Date Joined Mar 2008
Total Posts : 1580
   Posted 1/19/2009 10:36 PM (GMT -6)   
Crohns is always a big fear for sure..

Does anyone ever get 100% on the p-testing?

If one happens to get post colon crohns doesnt that mean they can get a bag again and still be med free?
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 5X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/20/2009 8:13 AM (GMT -6)   
Well, I am certainly not trying to scare anyone who is about to get surgery. It's just that my case has been slightly ambiguous and that concerns me and is another factor delaying my decision for surgery and tending to keep me trying some radical, far out possible therapies such as, for example, other parasites in addition to those I have tried to date (hookworm, which didn't seem to do anything, and TSO, which did help), not to mention homemade fecal infusions. As far as options if one is re-diagnosed, post colectemy, as having crohn's (and as having had, in the past tense since one no longer has a colon- crohn's colitis= crohn's limited to the colon) as opposed to UC, the bag doesn't solve the problem because the disease activity migrates to the small intestine and other organs once there is no colon there to attack, and removing all of the small intestine is not an option- well, not without being 100% dependent on IV tubes for nutrition obviously (not to mention that crohn's can attack any part of the digestive tract, including the mouth and throat for example). I guess in the absolute worst case one is stuck on immune suppressing drugs as well as possibly even prednisone for the rest of one's life then, with all the attendant consequences, barring some miracle cure. I guess if I was in that boat I'd pursue stem cell therapies- anything- to avoid that... anyway I don't mean to be a downer but was very discouraged to hear that several percent do end up in the post-UC crohn's re-diagnosis boat.


Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm, TSO again
Turmeric/circumin, boswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/20/2009 8:26 AM (GMT -6)   
There is no test available to conclusively determine whether the patient has Crohn's or UC. When one opts for surgery they are taking the chance that down the road they might be diagnosed with CD. There are many whom this has happened to and all of them state that there are still glad to have had surgery because they have all had their health returned to them. Many of them have been able to keep their jpouches but some have had to revert to a permanent ileostomy. Personally I don't think it's a good idea to avoid surgery (if it's warranted) over the the fear of later being diagnosed with CD. My GI felt I had Crohn's disease yet I knew I had UC. I opted for surgery and yes, my diagnosis was UC.

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 1/20/2009 10:05 AM (GMT -6)   
Sue-- you were able to get the surgery in spite of a Crohn's dx? The main effect the ambiguity in my biopsies is leading me towards is to slightly delay jumping the gun to surgery- eg giving a bit more time for remicade than I would otherwise give. I will probably get some more biopsies in the meantime and try and at least refine the diagnosis a bit more, but I know it is impossible to be 100% certain. Unfortunately I fall into the grey area.


Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm, TSO again
Turmeric/circumin, boswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 

Post Edited (Probiotic) : 1/20/2009 4:05:56 PM (GMT-7)

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