For those who went the permanent ostomy route, How would you compare the surgery to step 1 of the jpouch surgery? Did you use the same surgeon for both? What kinds of questions did you ask?

I've heard from others hear that the permanent ostomy surgery is much more complex? I just learned through another recent thread that some others don't have their buts completely closed, which seems odd?

Right now I have no reason to believe that the surgeon that performed my jpouch surgery isn't capable of removing the jpouch. Just curious as to what questions I should ask. Would it be uncalled for to straight up ask him if he feels comfortable performing the surgery?

I would ask him how many pouches he has removed while creating a perm ostomyand what his success/complication rate is.

He's mentioned that i was his first patient to develop chronic pouchitis and none of his clients to his knowledge has had any major problems with their pouch. There a few here that have had the same surgeon. The question then is it safe to assume that he hasnt done to many pouch removals.

I had my j-pouch surgeries at Mayo Clinic. My Crohns disease was diagnosed by a surgeon in the Twin Cities. He disconnected my j-pouch and created the end ileo. he wanted to do that so I had the choice of going back to the j-pouch if the opportunity ever arose, such as a breakthrough in IBD. My anus is still in tact and I have mucus a small amount of drainage. For me...this surgery was a piece of cake. I felt so much better immediately. It's been 3 years, and I have had no regrets with going this route rather then having my j-pouch removed and anus sewn shut. Best of luck with your decision.

BTW....I always thought my surgeon at Mayo was hesitent to rediagnosed the Crohns and get rid of the pouch because that would show as a unsucessful surgery. No evidence of that, just my opinion... :-)

Tiki,

I am sure in general it is harder to find surgeons who have removed more pouches than they have created, but I would definitely want a surgeon who has had experience with this surgery as I understand it can be complicated. The other option is, as Cataja mentioned, to retain the pouch and just have an ostomy created, but you may end up with diversional pouchitis which is also aggravating (not painful like regular pouchitis, but aggravating nonetheless). When I had it pre-takedown I would wake up soaked in liquid many evenings and I was very bothered by this. I do admit that since the takedown I have not struggled with any day or nighttime leakage at all, but I am sure the antibiotic helps this.
This may or may not happen to you. I am just passing along my experience.

I do like Cataja's approach and if I have to move to an ostomy would do the same as I would like to think that someday if they come up with better meds or treatment that I could possibly have my pouch reconnected down the road. I am just wondering if you have an inactive pouch for years, would this still really be feasible (to think it will function well again after being dormant for years)?

I tried the disconnect with end ileo route using my original surgeon but it did not help me. I still had pouchitis plus 4-8oz of discharge daily from pouch. I also developed neurological symptoms that I had never had before. I opted for removal with a different surgeon (I had wanted the removal all along as I knew I would never reconnect but the original surgeon totally ignored my wishes).

Part of the reason removal surgery is more complicated is because of the development of blood vessels that attach to the pouch. These need to be separated careful and obviously there is a risk of bleeding. I would want a surgeon who had some experience with removal - though you won't find a surgeon who has done lots. Just me but I wouldn't want to be the first.

Make sure you can have an end ileo, whichever way you go as they tend to be easier to manage especially in the long term.

For me the removal was my easiest surgery - I think for two reasons. First they finally got rid of the problem and second I used a mind body program and I do think it helped. Four months post removal I did a seven mile round trip hike to Ramona Falls at Mt Hood. Eight months post I went kayaking in central Florida for 5 hours.