Hi I am new to the group but need advice. My surgeon has recomended either a j-pouch or ileorectal anastomosis. The choice is mine. It appears my rectum is sound and not the problem. UC for 20 plus years and now dysplasia are prompting this surgery. Any suggestions?

"Holly" Posted April 10, 2008 11:29 AM
Well, 20 years with UC is a long time.
Cancer risk is very great so that said the colon should probably come out to avoid cancer.
Seeing that you are only 3 hrs from Cleveland, if it were me, I would head there to see one of the fine colorectal surgeons on staff. Dr Church, Dr Lavery, Dr Remzi, just to name a few.
Not saying that your surgeon isn't good, however, second opinions are very common. How many j pouches has your surgeon created?
I have had my ileo anal anastomosis(j pouch) for 20 years with great results.
I had UC for 13 years.
No dysplasia.Best of luck with your decision. It is not an easy one, we have all been in your shoes.

This message has been edited. Last edited by: "Holly",

Thanks Holly.

All I can say is I love my pouch. I'm amazed how this little bag inside me can compensate for 1.5 meters of colon.

Mark,

I'm not sure what Holly told you. But Jan has spoken on this subject before and says studies show the functional results are about the same with both (though it seems from people here who have IRAs, they have slightly less frequency).

However, as a UC patient with dysplasia, I cannot figure out why your doctor is leaving the choice up to you. Seems to me you need to get that rectum out of there since it will be highly prone to UC (even if it's not now and hasn't been in the past), and dysplasia can occur there over time. If you don't, you may end up with an IRA now and a j-pouch somewhere down the road. I'd take 1 surgery over 2.

Steve

Steve,
I copied my post above, go back and re read to see what I said.

This message has been edited. Last edited by: "Holly",

An IRA is a fine choice...as long as you DO NOT HAVE UC!!! Time and again, people have been told they have rectal sparing, only to find that UC comes back with a vengeance in the retained rectum. Plus, the fact that you have known dysplasia is icing on the cake to have the total proctocolectomy. This can be a gray area in the medical community, but if you have true rectal sparing (not using any rectal treatments), it is possible that you do not have UC after all, and perhaps it is Crohn's colitis. An IRA would be acceptable in that case.

According to the CCFA, "Limited colonic resection in individuals with ulcerative colitis is not recommended because of the high recurrence rate."
http://www.ccfa.org/info/surgery/surgeryuc

I'd get a second opinion.

Jan

Mark, I had UC for 32years before my surgery. J-pouch. They left part of my rectum and my UC came back with a vengeance like Jan says. Worse then ever in all my 32 years. Now I am having the end elio. rectum, pouch will all be gone. I would not have any of my rectum left the first time if I could do it over. I was once told that I had Crohns Colitis by one Doc. Others said no. I am not totally sure if I was ever diagnosed right. At age 11 I had a n ulcer in my duadeum, later, 30years later, a Doc said that was a misdiagnosis and I had Crohns. ??? Sometimes its hard to say, good luck with what ever choice you make. I wish you well. Ricky