explain the pouch surgery to me please

a lot of people have posted that they had the pouch surgery. I am terrified that I may need surgery because I dont want a bag on the outside.  (it scares me to death)

but the pouch surgery sounds different, please explain as my GI specialist hasnt mentioned this to me in our 5-6 minute meetings.

i stil have another option to try first, but I will feel much less hopeless if I thought there was another option if this one fails.

jpouch.org is a good resource. You should also check out http://ucstory.wordpress.com

The J-pouch site explains it fully.

Your doctor probably hasn't mentioned it because it's generally not a primary option.

Two things. One is that an educated GI treating a patient who is otherwise a good surgery risk will, given the state of the research today, absolutely consider the j-pouch the primary surgical option for UC. Some people choose permanent ostomies for reasons of their own, but surgeons who do both procedures will almost always encourage you to try the j-pouch because it works so often. The success rate for the surgery, as measured by patients reporting good or excellent quality of life, is 92.3%. That is higher than any other single medical option for treating UC. But lack of information about that is not uncommon among GIs--they are not surgeons. (And as my second opinion GI pointed out: "My j-pouch patients are so much better that I rarely see them again.") Talk to a surgeon who does the surgery all the time to get the best sense of what the options are for you.

The other is that the ostomy bag (which will probably be part of your experience of j-pouch surgery) is not nearly as bad as you are imagining. You would not need a wedding dress with extra room. I continued to wear my usual clothes and even people who knew I had the bag couldn't figure out where the heck I was stashing it.

I'm not saying it was a picnic, but it was so much better than having active UC and the constant threat of colon cancer hanging over my head that I barely know how to describe the improvement. The entire area of my brain that used to be taken up figuring out where all the bathrooms are was liberated as soon as the first surgery was over. And I knew I would not die of colon cancer (I had dysplasia) or of fulminant UC. You've had a liver transplant, so I don't have to tell you how valuable it is to dodge that bullet! But you need to be free to really live the second chance at life that you got, and either surgery is worth it if it will do that for you better than the drugs.

Post Edited (Charlotte Gilman) : 9/26/2008 9:03:10 PM (GMT-6)

Hi neednewbody...I do too..lol.

     I have been in a flare since April.  My GI doctor has never mentioned surgery to me, so I took matters into my own hands in August.  I saw a top notch colorectal surgeon and guess what?   To my surprise he said he did not recommend I have the surgery.  Now, mind you, when I saw him I was off the prednisone for two weeks, still had some bleeding and urgency.  He had a look "up there", did a tad of scraping and said it didn't look bad.  He read over my colonoscopy results which was done while I was hospitalized in May.  In his very knowledgeable opinion, he said he considered my ulcerative proctitis...mild!!!  Well, if this is mild I sure hate to see what severe is.

     about a week later, I still felt the results of his exam and started to bleed more with urgency and six or seven bm's.  Had to go back on the prednisone.  Tapered off two weeks ago and guess what....back on the prednisone again!!!  This is getting old and I am getting very annoyed.  I don't know what else to do.  My GI doctor wants to send me over to the University of Pa Hospital to see some Remicade specialist but he knows darn well I am NOT a candidate for Remicade.  You realize these doctors get kick backs from these drug companies don't you?  My neighbor has her doctorate in pharmacy and works for the company who manufactures Remicade and she didn't want to admit that is the truth..but she didn't deny it either.

I think the doctor usually prescribes what he feels is best for you and if he gets a kick back it is a bonus.  Most doctors think of you first.  Believe me, I have heard them complain about the drug companies more than you ever will.

For the state of your illness and electing for surgery... I think you should try all the drug options first and then think about life threatening surgery.

I posted this initially because i wanted to see what other options were out there so I dont feel like a lost cause when I flare up and the remicade doesnt work.  I will try Humira next but it is nice to know that the surgery is still out there as a future future future option.