FAP Syndrome - Colectomy w/ inside pouch. What can I expect?

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New Member

Date Joined May 2006
Total Posts : 2
   Posted 5/4/2006 6:14 PM (GMT -7)   
Hello all.
I'm new to this website.  I don't know all the medical terms for what they are about to do to my body, but would like to talk with people who have had similar experiences. 
I have FAP syndrome and doc will be taking all of my colon and rectum out.  Will have an outside bag  for about 8 weeks then they will go in and make an inside bag.
I am a 39 year old female and I just wondered if anyone else could tell me what to expect.
Thanks so much and good wishes to all.

Forum Moderator

Date Joined Feb 2006
Total Posts : 5695
   Posted 5/4/2006 7:23 PM (GMT -7)   
The j-pouch will be an adjustment for you since you probably have a healthy colon sans the polyps.  I had the surgery for refractive ulcerative colitis.  It's a bit easier adaption for us as our colon's were shot and the surgery, though not perfect, is better than living with UC.  If you want to meet other FAPers who have had this surgery and can probably give you a better idea of what to expect, go to www.j-pouch.org   I can tell you that when I was having my surgery 5 years ago a woman in the room next to me had the surgery for FAP.  She's doing very well today, we are still in touch. 
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

New Member

Date Joined May 2006
Total Posts : 2
   Posted 5/5/2006 2:09 AM (GMT -7)   
Thanks so much for the info.  Anything info I can get at this point is so welcome.
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