First colorectal surgeon appointmet.... 3/7

what should I be asking? 

Are there any good resources on the stoma placement?

What are the different surgeries?  I am severe UP & moderate left side...  should I expect to lose my anus?

Thanks for any input :)

 

mrsbugzy - My GI expects that i'd be given a pouch (in a passing phone conversation) - but, in my research I've found that not everyone gets the pouch during the first surgery... and I want to cover as many bases as I can just in case I'm not offered a pouch. There is also the point that I am on Humira which as I understand brings with it an increased risk of pouchitis.

Have you had an issues with the pouch itself? Was your procedure done all at once?

suebear - thanks for your input! My info on Humira vs. pouchitis is just what I've read from some posts on various forums & the preferences of specific surgeons. Not sure that there's any scientific basis to it other than Humira supresses the immune system and you can have an infection without beign as aware? (Not so much that it causes the pouchitis - I didn't word it well earlier)

I haven't heard anything about Humira being associated with pouchitis either. Honestly I doubt there is any data about this out there at all... Humira has only been used for UC for a relatively short time so anyone who has used Humira AND had a j-pouch has had their pouch for an even shorter period. If anything it would be anecdotal. Sounds like BS or a misunderstanding to me.

Prednisone and Remicade use pre-surgery do increase the risk of complications, but many people go through surgery in this situation out of necessity. I was one, I think most people on this board had their surgeries while on prednisone. It would have been much more dangerous for me to try to go off -- even at 35 mg/day I was in danger of toxic megacolon, so I probably would have had a perf and emergency surgery before reaching 0 mg. As for Remicade, I wanted to do one more infusion as a last ditch effort to see if it would work for me, but my GI explained that Remicade increases surgical risk and I was most likely going to need surgery, so I forewent the final infusion. You might feel similarly about Humira if the timing works out that way.

You won't have much input on your stoma placement... I mean, you will have input in the sense that it will be based on YOUR unique anatomy, but you don't need to think about it, let the experts decide. My surgeon actually prefers to do the placement himself and he picked my stoma location right before surgery. I had myself all psyched up and upset about it because everyone on the internet says you MUST have a good WOCN pick your stoma location and I assumed that because I didn't have that (and my surgery was somewhat urgent, so I didn't have time to see the WOCN) that my location was bad. I've learned in the past six weeks that the location he picked was excellent. So, don't be alarmed if your surgeon wants to pick the site. Some prefer it that way.

UCWarrior2010 and I had our surgeries in January and we both posted the full list of questions that we asked during consults -- you should be able to find them if you click back a few pages. It is way past my bedtime now that I'm back at work or else I would dig up the links for you ;)

Regarding the number of surgeries, that is basically up to the surgeon's discretion but IBD sufferers almost never get a j-pouch in one surgery. Typically you will either have three surgeries:
1) remove the colon, create an ileostomy
2) remove the rectum, create the j-pouch, create a new ileostomy
3) reverse the ileostomy and connect the small intestine to the j-pouch

OR two surgeries, where the last one is the same and the first one is a combination of 1 and 2 above. Someone on this board has a surgeon who likes to combine surgeries 2 and 3 when possible, but that's uncommon -- most like to wait and let the j-pouch heal without output running through it. Some data suggest the three surgery approach is safer and has better outcomes, other data suggest that it's better to minimize the number of total surgeries so it's best to do only two. Ultimately it seems to come down to surgeon's preference most of the time.

Good luck!