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Hello,
I'm 32yrs old and have been living with UC for 8.5 years. I've tried many different medications over the years. Some have helped and others haven't. Lately my meds don't seem to be working like they use to so my GI referred me to a surgeon. I'm meeting with the surgeon this wednesday and hoping to get some insight in to the J-pouch surgery. I feel the surgery is my last option and I very much like the idea of being "cured" of this pain in the @$$ disease. If any one would please share any information as to what I can expect in the Consult or questions I should ask the surgeon or stories (good or bad) or anything I would appreciate it.

Marc
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You can ask how many steps they would do the surgery in. Also if it would be done open or laparoscopic. What the expected recovery time is. An important question to ask is how many j pouch procedures has this surgeon done. Obviously you want someone that has done many.

This surgery has been a life saver for me. As tough as it is to get thru, I would do it over again in a second. Good luck! Smiler
I suggest you find out how much of your rectum they will be leaving with your rectal cuff. This is what they attach your j-pouch to. The most common method is the double stapled one. There also is a hand sewn with mucostomy advancement - something like that. With that one they scrape or strip the mucosa of the rectum that is left, to eliminate UC cells, and then sew the j-pouch to it. The double stapled procedure allows for better control of your BM's but the 1-2 cm left in of your rectum can still get UC. I was surprised to find out, after having the operations to cure UC, that I still have it in 2 cm at my rectal cuff. Plus it still is UC. I have inflammation and bleeding plus the pathologists report of the biopsies says it is UC. They call it "cuffitis" but it is UC. I'm finally managing to get it into some sort of remission with suppositories and will need to figure out how many times a week I need to use them to maintain "remission." They took out 5 feet of my colon/rectum/etc. and left 2 cm. Those 2 cm are right at the back door, if you know what I mean, so are in the perfect spot to feel all the action of my many BM's per day.

There is also the difference between "open" surgery and laproscopic surgery. I wish I'd known about that before I had an open procedure. I probably would have had to have the open one anyway, since I already had scaring from prior abdominal surgeries.

Each time the cut and open you us you will naturally develop scar tissue that can turn into adhesions and they can be very painful. During Lapro surgery they make several small incisions to perform the surgery through and thus don't make as many scars to cause havoc in the future.

Not all surgeons perform Lapro surgery so you might want to get a second opinion from one that does them.

There is always the option of not getting the j-pouch and going to an ostomy. You usually can change your mind down the road and get a j-pouch constructed.

There is another kind of pouch BCIR, or some initials like that, similar to K pouch. In this kind they make a pouch in your abdomen with a valve that you cath to empty instead of having BM's the normal way. There's a separate Forum on here for K-Pouchers. You might want to read up on them too.

If I had it all to do over again I still would have had the surgeries, maybe even a few years before I did. I just resent them calling it a cure, it takes away most of the organ where UC attacks us but as I explained they leave a bit at the rectal cuff.

There are other problems that can crop up. Most people have no or few problems. Those people usually do not go into support chat rooms as they are feeling great.

Good luck, it's a hard decision. I personally would not take prednisone again and didn't like the side effects of the remicade and other stronger stuff. I had also had it for at least 15 years and was at more of a cancer risk as I'd had it so long. There was no evidence of cancer yet, I was just at a greater risk. Plus I am in my 50's and didn't think a cure would be comming around the mountain in time to help me. You should have seen my colon - it was one ugly organ at the end. Confused

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