Posted 11/4/2007 2:21 PM (GMT -7)

Are you consulting with colorectal surgeons?  If you have met with 4 surgeons who don't recommend a j-pouch then I would not attempt to have surgery with any of them.  The j-pouch is considered the gold standard surgery for those wanting to get rid of their colon due to UC.  Patient satisfaction rate is 95%.  I am surprised that you haven't found a surgeon in support of it, that's about the only surgery that new CR surgeons are being taught.  It is fairly common to find a good well trained CR surgeon in any metropolitan area.

 

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
 

Posted 11/4/2007 8:41 PM (GMT -7)
i was advised against the j-pouch also, because of possible failure rate, but i had already decided against it. I actually really liked the idea of that BCIR, until i found out there are only two or three places in the US that do it, and only about 500 people have ever had it done. I wasn't wanting to be in such a small group, lol. My gi however was pushing for me to get the j-pouch. that just wasn't for me, lots of people though, suebear for example love having a j-pouch.
good luck with whatever you decide, and i will also asnwer any questions
 

Posted 11/5/2007 10:14 AM (GMT -7)
I had a total abdominal colectomy with ileo-rectal anastomosis, which is a surgery where they remove all of the colon from the abdominal cavity but leave the rectum and sometimes the very bottom of the sigmoid colon.  My surgery was done September 5 of this year with an open incision and I've been back to work for a couple of weeks.  My surgeon said that only about 5% of the patients he sees for surgery are candidates for this surgery and I was given this option only because my colitis did not involve the rectum or sigmoid colon.  High grade dysplasia was found in the ascending colon after a 28 year history of colitis and after the colon was removed a very small cancerous lesion was found in the same part of the colon.  No cancer was found in the lymph nodes so I was told that no chemo is required.  If dysplasia or cancer ever shows up in what was left behind I should still be able to have the j-pouch surgery.  I will have to be "scoped" at least once a year with biopsies and am still at risk for colon cancer.  With the j-pouch surgery I was told that the risk of colon cancer would be virtually eliminated. 
 
I think that most people who have the entire colon remove can have the surgery without a permanent ileostomy by having the j-pouch surgery but there are exceptions.
 
 
 
 

53 yr old male, UC since 1978
800mg Asacol x 3 daily
Multivitamin
Forteo(for osteoporosis)
600mg calcium + 200 iu Vit. D x 3 daily
Advicor(for cholesterol)

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