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goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 4/16/2009 4:21 PM (GMT -7)   
Anyone here have a KPouch?...if so where did you have it done?...does anyone do this in new england?
42 year old woman diagnosed with UC 1991, Jpouch surgery 1992, Crohn's diagnosis 2009
Current meds: 800mg xifaxin, 6mg entocort, Humira (started 3/23/09), synthroid, aciphex
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/16/2009 5:02 PM (GMT -7)   

goldy3

J-pouches/K-pouches are not recommended for Crohn's dx since the disease can 'come back' in the pouches...


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 4/16/2009 7:25 PM (GMT -7)   
That is also what I have been told. Most surgeons just won't do the surgery because chances are pretty high that you will be back for another surgery way too soon. Good luck in your search. Best of luck to you.

I just reread your signature.... am I understanding that you have a J Pouch right now and it is now being affected by CD?
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 4/17/2009 2:50 PM (GMT -7)   
Peggy...yes I've had a jpouch since1992 due to UC....I was just diagnosed this year with Crohn's....the jpouch is not actually the problem at this point as my stricture and inflammation is above the pouch at the connection...I just started humira which is helping but I do realize at some point I may lose the pouch...if they ever have to go in and do a resection above the pouch, there may be difficulties reconnecting...just trying to look at my options if that day comes...I realize I will most likely have a perm ileosotomy at some point, but was hoping for a kpouch...I know, wishful thinking....anyway, I don't think anyone from new england does kpouch's....
42 year old woman diagnosed with UC 1991, Jpouch surgery 1992, Crohn's diagnosis 2009
Current meds: 800mg xifaxin, 6mg entocort, Humira (started 3/23/09), synthroid, aciphex
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/18/2009 7:53 PM (GMT -7)   
unless its changed there are only two hospitals that do them, one is in florida (i think) and the other is in lousiana. I checked into them 2 years ago when i had my surgery.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/21/2009 5:22 PM (GMT -7)   
goldy3...where in NE are you? Would the Cleveland Clinic be too far?
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