Facing J-Pouch Surgery

as each day passes this decision for surgery becomes more and more easy to make in the yes direction. Every trip to the bathroom, every accident, every pain and knowing I'm out of medications to control my disease is making it much easier. I haven't seen remission in years. My condition has been calm at times but has always been short lived, especially after my first surgery in 2013. I'm a prisoner to my house, especially the last 3 months or so due to the accidents. I'm only 42 and look ahead and ask myself do I want to deal with these issues the rest of my life. They aren't going to go away and without an effective drug treatment, why continue to go through it in hopes prednisone will make is subside for a period of time. I went through a brutal painful surgery already and I'm naturally nervous but the pain was only temporary. Seems like a small price to pay in order to try and get my life back.

I'm sorta of in the same boat with different issues and am wondering because of chronic pouchitis I too should go back under the knife and remove the pouch. I too had issues with my surgeries and the pain. I'm pretty housebound myself. 

Prior to your surgery you need to speak with anaesthesia or the acute pain team regarding your concerns with post operative pain management.  Planning ahead for what they will do helps everyone on your team, including you.  Perhaps starting an epidural pre-op is the way to go.

a vast majority of my pain was due to the bad infection I had from the bowel leak that put me into emergency surgery. I never felt anything like it. I was in ICU for 6 days and in the hospital for 12. I was initially on morphine which I couldn't handle the hallucinations, I was then put on the dilaudid pump which helped. The hardest part was the initial "get up and walk", that was brutal. I needed three nurses alone just to roll me on my side to wash my back it hurt so bad. I'll definitely be better prepared this time around

I don't know the details of your previous surgeries, but I'm surprised if he said there's "a good chance" of the pouch not functioning correctly. It sounds like he was thoroughly reviewing all the things that can possibly go wrong, but unless you've had surgery that affected the rectum or sphincter a pouch should work fine, as often as anyone else's. Do you know how close to the rectum your partial colectomy was? How experienced is your surgeon at J-pouch surgery?

If they can't hook up to the rectal cuff for technical reasons you could still avoid a bag with a K-pouch or BCIR, if that was preferable to you.

My previous surgery was a left hemicolectomy, they took out 15 inches of my left side. I have my rectum and a small section of my sigmoid colon. My colon is pretty much a straight shot down to my rectum. I haven't had surgery directly to the rectum or sphincter but there may be some nerve issues from the previous surgery that's causing me not to be able to control my bowel movements. By the time I feel I even remotely need to go, I have an "accident". It's literally within 5 seconds or so. My surgeon is very experienced, he did my sisters Jpouch over 22 years ago and has done countless of these procedures. I'm very comfortable with him as my surgeon. He didn't mention a Kpouch or BCIR, I need to look into those to see what they are.

If you're having no control with an intact rectum I can see why your surgeon might be concerned. A J-pouch might give you back control, but it also might not. Perhaps anal manometry could be done to test how well your sphincter is working, since that's mostly what gives J-pouchers control.

A K-Pouch exits the body on the lower abdomen, like a regular ileostomy, but instead of emptying into a bag, it stays closed until you insert a plastic tube (at your convenience) to empty the internal K-pouch. It has cosmetic advantages (a piece of gauze instead of a bag) and functional advantages (no adhesive to seal to the skin). It's more complicated surgery than a simple ileostomy.

Kona, you need to get a flex sig scope and have them look at the rectum and tell you if there is any active UC in the rectum. If there is, that could explain the urgency issues more than things being a "straight shot" to your rectum. With the colon you have left, I don't really understand how it's a "straight shot" anyway - the whole transverse colon is there.

Honestly, I can't remember with a colon & rectum whether watery stools in and of themselves created urgency, or if it was more due to the UC or sickness. One thing I will say: with a j-pouch (unless you have serious cuff or pouch issues) there is no real urgency to speak of even with watery stools - after you get past the post-surgical "adjustment" period (which can be weeks to months long).

If you have active UC in your rectum, I think j-pouch surgery would be a good way to go to resolve  your issues - but with a surgeon who is very experienced doing j-pouches, and who also has good confidence in their ability to give you a positive outcome. I would not use a surgeon who feels you have a greater likelihood of failure than success. Sounds to me like someone hedging their bets. I wouldn't want a doctor like that.

Steve

This is what the current shape of my colon looks like. There is active UC due to the throbbing, occasional mucus and occasional light bleeding that I have seen. The shape of my colon has no bearing on the control issues as the surgeon explained to me yesterday...I though it contributed to it but it's nerve/muscle issues causing it from my prior surgery. I've never had control issues like this at all prior to the surgery. The surgeon did mention he would leave about a half inch at the base of the rectum, like he did for my sisters Jpouch, but said it would have to be checked from time to time due to colitis being able to attack that portion. He feels in his experience that gives the best "control" outcome. The surgeon is extremely experienced and has done countless jpouch procedures. My sister had hers done by him over 22 years ago and she hasn't seen a doctor or taken a med since. He wanted to cover all basis, good and bad in regards to succeeding and failing. He did say it is a positive thing the previous surgeon didn't go into my pelvis area. My body went through a lot of trauma, the first surgery had a bowel leak and caused a serious infection. I had emergency surgery two days after my initial surgery. My current GI's nurse has worked with my new surgeon in the OR for many years and said he's a magician and has 100% confidence in his abilities for doing the jpouch procedure.