FYI for those of you who've ever experianced fistulas...

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pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 7/23/2008 3:34 PM (GMT -6)   
I just got my summer 2008 journal from the CCFC of which my own GI answers questions in the "Dear Doctor" section (he's one of the top lead researchers for IBD in Canada, Dr. Remo Panaccione)
 
One of the questions asked was from a UCer that complained of having a fistula (she's 70 yrs old) in his answer to her he states that fistulas are related to crohn's disease, not UC and that every attempt should be made for a correct DX and to review all the previous investigations and perform new investigations (tests) to ensure that it is not crohn's disease...he also does mention that some people can actually have both CD and UC and that a UCer that has their colon removed can infact develop crohn's disease if they happen to have both forms of IBD and were not aware...it's not very common but it is possible.
 
:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 7/23/2008 3:59 PM (GMT -6)   
thank you very much for posting this information!  Definitely food for thought for those of us with fistulas

UC diagnosed 10/05, first symptoms 1983
canasa and lialda daily
Trying out Digestive Fitness Probiotic
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 7/23/2008 4:09 PM (GMT -6)   
right...my GI has never once suggested the possibility of me having crohns, though he knows darn well that I have a fistula & have had it since last November! I always planned to ask him about it, like "Is there a chance I could have Crohn's?", but never did. I don't know why. I guess because the treatments are so similar, barring surgeries. I swear, next time we talk I'm laying it on the line! But honestly, at this point I don't care which it is, UC or Crohns. If I was heading into surgery I would, but right now, what does it matter? They both stink. I suppose if I was going to try Humira, I'd push for a Crohn's dignosis based on the fistula. Just for insurance purposes.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 7/23/2008 4:24 PM (GMT -6)   
Eva - I agree it is better to know. Even though my doc was saying "no way" when the possible crohn's diagnosis was suggested (not by me, but doctors at hospital where i was being treated for abscess that led to fistula) but, he did perform another colonoscopy and biopsy as soon as I was well enough. I could be imagining it because I was coming out of the sedation, but after the scope, my GI seemed a wee bit smug when he announced that it still looked like UC in there. I really don't think doctors like to change their diagnosis'!
UC diagnosed 10/05, first symptoms 1983
canasa and lialda daily
Trying out Digestive Fitness Probiotic
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 7/23/2008 4:36 PM (GMT -6)   
Yeah Right! I've been looking at stuff on the Net about differentiating between the 2- and based on what I've read, it's UC for me. I know my inflammation is continuous, with no spots of healthy tissue. My GI always thought my fistula developed because I'm immune suppressed- in my case, it was an abscess, which started at my episiotomy site, which eventually burst & became a fistula (totally gross, BELIEVE ME, I know!). And looking into fistulas, they often develop at old episiotomy sites because the tissue is compromised already, so it's more fragile & prone to fistulizing. And I've had biopsies done during scopes, a really good 2nd opinion consult, a ton of flex sigs- never has Crohns been mentioned. So even though fistulas are rare in UC, I still think they can happen.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 7/23/2008 5:22 PM (GMT -6)   
In my 70s I can't imagine I'd really care enough to distinguish between the two diseases enough to go through all the diagnostic tests again.

I'm not nearly that old and I saw a new GI recently who wanted to start all over with the tests "just to be sure."

Uh, yeah, I'll get right on that. . . . Needless to say, I haven't bothered.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 7/23/2008 5:29 PM (GMT -6)   
As most of you may know, I have crohn's colitis which is CD affecting my colon, it was only because of the obvious perianal crohn's skin tags that I have (and have had since the very beginning since that is actually where my CD started, not in the small intestines where it's most common to start) and because when I first got sick my CD was affecting my colon, rectom, anus and small intestine I was an easy case to DX....but I'll tell you this, a brain dead GI would more than likely try and convince me I have UC because my CD has been constant in my colon my entire 17 yrs, it cleared out of my small intestines, and only comes and goes in my rectom but also stays constant with my perianal crohn's skin tags, but point is we have to be ontop of what's going on with our bodies rather than rely on "specialists" who still have much to learn about both UC and CD.

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

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