Crohns or Colitis???

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Wakabo
Regular Member


Date Joined Sep 2008
Total Posts : 41
   Posted 9/18/2008 10:42 AM (GMT -7)   
I am new here...have been diagnosed with Crohns about 14 years ago. Am currently seeing the U of M for a work up and am totally confused. My recent colonoscopy showed ulcerative proctitis, most of my disease has been rectal, with peri rectal abscesses and one fistula. This new doctor is doing new bloodwork and did the serology 7 which the nurse just called and said my results were negative. I am frustrated he is telling me that now I have UC not crohns and that when I was on Remicade for four years it may have cured the crohns. I am allergic to remicade and imuran now. only take asacol and rowasa and aciphex. I am miserable with the proctitis, lots of mucus and blood and pain! Anyone out there been to the U of M??

mj8dokken
Regular Member


Date Joined Dec 2006
Total Posts : 149
   Posted 9/18/2008 10:46 AM (GMT -7)   
He's full of bologna if he said that Remicade "cured" Crohn's. If it did, we would all be on it (and Crohn's free). I am of no help otherwise. Sorry!

Bad flare May '06 resulted in CD diagnosis-symptoms for 10 yrs prior.
Asacol: 2400 mg/day
6mp: 100mg/day
Prednisone: 10 mg/day
Entocort: 9mg/day


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 9/18/2008 11:31 AM (GMT -7)   
Some people have a case in which it's very hard to tell whether it's Crohn's or UC.

The reason turns out to be quite simple:

Historically, doctors have considered there to be two forms of IBD: Crohn's and UC. So they always wanted to label patients as having one or the other. Patients and doctors both get confused and frustrated when they can't nail down whether somebody has Crohn's or UC - for example, when somebody shows signs of both, or when blood tests shown one but biopsies show the other.

But the latest research shows there are actually at least 30 different forms of IBD, not just two, with lots of overlap between Crohn's and UC and "indeterminate" IBD, and the concept of it being either one or the other of the two main subtypes soon will be obsolete. It's just not that simple. Soon they will say "You have IBD subtype 17," for example (or whatever naming convention they come up with).

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/18/2008 11:48 AM (GMT -7)   
You wrote this;
" My recent colonoscopy showed ulcerative proctitis, most of my disease has been rectal, with peri rectal abscesses and one fistula."

This is crohn's not UC, there is no fistula involved with UC and CD can affect the entire GI tract from mouth to anus, UC is limited to the colon and rectom, you have anal involvement, this is crohn's not UC.

When CD is affecting your colon it's referred to as crohn's colitis (I have this, but I've also had CD affecting my small intestines in the past as well).

For either CD or UC it can affect the rectom which is referred to as "proctitis" which is simply inflammation of the rectom from either CD or UC.

The fact that you have anal involvement and especially fistula indicates crohn's not UC.

The same meds used to treat crohn's colitis are used to treat UC because colitis is simply inflammation of the colon (col=colon, itis=inflammation) from either UC or CD, the same meds used to treat proctitis for a UCer are the same as used to treat proctitis for a CDer.

The other major differences between CD and UC is that CD can affect the many layers of the intestinal lining (often leading to fistuals) with UC the inflammation is limited to the surface of the lining only (which is why UCers do not get fistulas)...also, there are generally skipped patterns of inflammation with crohn's meaning where there is inflammation there is often healthy tissues in between the inflammation (skipped patterns of inflammation) with UC the entire area will be inflammed with no skipped patterns).

It is however possible for one patient to have both UC and CD but this is extreamly rare (aprox 2% of patients).

Blood tests are not always 100%, you have clear cut visual signs of CD not UC in my 17 yrs experiance of myself having crohn's.

If your proctitis is that bad, ask your doc to stop wasting your time and give you cortifoam steroid enema.

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


Wakabo
Regular Member


Date Joined Sep 2008
Total Posts : 41
   Posted 9/18/2008 12:03 PM (GMT -7)   
Thanks for the responses!! That makes sense to me with my history of rectal involvement I have always been told its crohns until this Dr. He did tell me today to ignore the negative serology 7 test as this means nothing unless its positive. I asked for the cortofoam and he was like no try the rowasa supp and enemas twice a day. I cant hold them for 10 seconds.
JenG
 
Crohns since 1994, inflammatory arthritis
Allergic to Remicade which helped me so much for about 3 years
Allergic to Imuran
Taking Asacol and Aciphex, rowasa enemas, prempro, synthroid, xanax, darvocet, elavil, cymbalta, folic acid and vitamin D


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/18/2008 1:07 PM (GMT -7)   
Make him give you cortifoam, he's suppose to be working with you, if you're having issues with holding them in then it's a waste of your money not his and tell him so...or maybe consider finding yet another GI...in my 17 yrs I've gone through 4 GI's, it's my health and just because someone has certificates hanging on their walls, if they aren't willing to put their egos aside and work with me then they can expect to be ditched.

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


Wakabo
Regular Member


Date Joined Sep 2008
Total Posts : 41
   Posted 9/18/2008 1:44 PM (GMT -7)   
Yes I need to divorced this doctor and move on to someone who listens. I have had 7 GIs now its hard to find a good one that listens all the ones I have had success with are far away which makes it hard when hospitialized. Thanks for the advice!!!

JenG
 
Crohns since 1994, inflammatory arthritis
Allergic to Remicade which helped me so much for about 3 years
Allergic to Imuran
Taking Asacol and Aciphex, rowasa enemas, prempro, synthroid, xanax, darvocet, elavil, cymbalta, folic acid and vitamin D


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/18/2008 1:51 PM (GMT -7)   
You are more than welcome and good luck on your possible future "marriage" to a new GI LOL!

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

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