Diagnosed with UC, then 1 week before JPouch creation get diagnosed with Crohn's????

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UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 2/12/2009 7:56 AM (GMT -6)   
I'm sure it's been talked about before here but the search function doesn't work too well here.  I read all the posts over on the J-Pouch board but only one person seemed to be in the same boat.  Plus I like you guys here on the UC forum.  :)
 
My husband had an emergency colectomy in 3/08 because of UC (was definitely UC).  We had to wait until he gained 60lbs back and got off Prednisone.  In December we finally made an appointment for the J-pouch surgery step 2 of 3.  The Dr.'s secretary is an idiot and wouldn't give me a straight answer on whether he needed any tests before the surgery.  That's a long story, we end up missing the first scheduled surgery date because we find out on Friday afternoon at 3:30 before a Monday 7am surgery that he needs a Capsule Endoscopy done before he can have the surgery. 
 
My husband had it this week and the surgery was rescheduled to 2/23/09.  The nurse from the endoscopy place called back yesterday and said it looked like he had Crohn's.  Note we haven't heard from the actual doctor reading the pictures or the surgeon yet.  This might just be a false alarm (crossing fingers)
 
My question is... What is everyone's opinion/experience with crohn's and a j pouch? Has anyone else had this happen pre-pouch creation? I have a feeling our surgeon is not going to want to do it.  My husband is very upset with the news so close to getting the pouch created.  I've read alot of people find out they have Crohn's after pouch creation and takedown.
 
He said he would really be happier with the Jpouch.  I know it really depends on the person on whether the J-pouch will even workout.
 
I'd just like some input and hopefully some uplifting advice I can give him.
 
Thanks

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16736
   Posted 2/12/2009 8:48 AM (GMT -6)   
I am sorry this happened to you. I hope the diagnosis is wrong so he can move forward with his jpouch. I am with him 100%, I would want the pouch if I had surgery. As a matter of fact, i would go for it even if I got a chrons diagnosis after the fact. I don't know medically why he wouldn't be able to, maybe there is a good reason, I would do all the research possible and hope they can still do the pouch. Best of luck to you both. I will keep you in my thoughts.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/12/2009 9:13 AM (GMT -6)   
You can meet others who had their diagnosis change after surgery at www.j-pouch.org Many of them are managing their CD just fine with their jpouch. Some had to revert back to a permanent ileo. Hopefully the nurse is wrong and your husband can proceed ahead with his choice of surgery.

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

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