What don't you like about your bag, neo, or pouch???

Well that is a great idea Pat, I don't stand up to go but I just might start standing for the sheer fun of it.

Alanna...when you come out of one of those peek thru stalls...go into your deepest voice and say "Sorry Girls"....the looks are precious as they've seen you in there standing with your feet towards the toilet!!!..(I do have a warped sense of humor)....Pat

What would i have done differently...thats an easy one...not PANICKED. When one is presented with gross hematura and i do mean gross at 2 A.M. and a trip to the E.R. and subsequent CT which showed a tumor. No time to think...heads in a whirl...i trusted the urologist my internist sent me to immediately. The TURB followed within 4 days...whatever that was...had to look it up. Pathology came back T2 Grade 2..invasive into the muscle. Brain cells started to function at that point..my thinking if i was to survive this i was going to go to a top cancer facility and a top surgeon. I hit the internet and every major Cancer facility and hit every urological surgeon to find the ones who specialized in bladder cancer....i was able to narrow down quickly as the majority were prostate cancer. I called Memorial Sloan and got an appointment the next week with Dr. Harry Herr. He took one look at my slides and CT scans and scheduled me for his own TURB. He saved my life. He got the margins the other urologist left in there and got all of the cancer out of the muscle which was just starting to invade. I was free of any cancer cells in the urine at that time but Dr. Herr a bit like Arnold Swartzenagger said, "It'll Be Back". He advised Cystectomy and wanted to do a neobladder on me. OK more research...at that time the neobladder with success with women wasn't that great plus he couldn't give me one woman he'd done that was a success. He equated the Indiana Pouch with the ilial conduit. OK i need to talk to some other people. I specifically then went on a search for surgeons who dealt with BC in WOMEN..and a lot of women and thanks to Delta's getaway weekends (Wed thru Tues if you want) i very economically traveled all over the place in very short order. I talked to Dr. Mark Schoenberg by phone and he was so very helpful and kind..he even directed me to specific surgeons...he's a specialist in neobladders and nerve sparing for men..so i saw Dr. John Stein at USC/Norris whom i loved(a long ways to go)..Dr. Birhle and Koch at Indiana U.Medical Center (where they invented the Indiana)..i even checked out bladder sparing at Mass. General with Dr. Shipley and then by reading a post here on the storyboard i found out about a Dr. Inderbir Gill at The Cleveland Clinic who just happened to be the only surgeon in the world at the time to do a cystectomy laproscopically so i went to see him. I would not have gone wrong with any of these surgeons. I, of course, went the Diva route plus it was closer to home should there be any complications and went with Dr. Gill. He's a world class transplant surgeon and head of the division at Cleveland.
One question i wish i had known to ask and somehow missed with all the information out there on the internet..most of which did not apply to me or scared the hell out of me and i quit reading..
1. why can't they save some part of the ilium so that we won't have Vitamin Bl2 defeciency down the line. Thats were we absorb Bl2...the only place we can absorb it...i want my ileum back as i now have to get shots..tho they now have a sublinqual tablet that dissolves under the tongue.
Would i have done something different if this forum was in place...i don't know...lord knows i would have gotten tons of feedback. At the time there was just the storyboard and Wendy put me in touch with a couple of mentors including herself and one Karen Greene who was such a tremendous source of support and caring and she carried me through it all and we are still writing and i consider her one of my best friends though we've never met in person.
This is kind of a long reply for what would i have done differently...have you stopped reading...go back to the beginning.....DON'T PANIC ..search out the best facility and the best surgeon for what you need to have done. Don't be afraid to ask any question...there are no dumb questions.... Hugs Pag

Hello
I am now 4 and a half years post surgery with the Indiana Pouch as well. I miss the peace of mind I used to have in regards to being able to run out the door or plan an event or going to a conference for work and not thinking twice about where the toilets are or if I will need to empty the pouch. Last week I was at a conference and there were 2 toilets and 200 people and everyone stands outside the washroom waiting for you and it does take a little longer than slipping in and having a quick pee. I find that frustrating. Being totally honest I also hate it when these bathrooms have large gaps between the door and the wall and everyone can basically see in through the gaps and I feel like they are all watching and wondering what the heck that person is doing, that might sound like a bizarre statement but it has happened to me so many times it is ridiculous, I figure if I can see out perfectly through those large gaps then they can see in and when they are lined up waiting someone probably sees something - maybe that sounds ridiculous but its true for me. I always quote that line "there is no reality, only perception!" Right now I have stones (calcifications) in the stoma canal, I have had stones removed from the pouch twice before, it is a simple procedure, they put you out for it, but I hate them messing around in there because I am always afraid they will affect the continence of the pouch. My surgeon did a great job, but I wish the pouch was a bit higher up because I find that when I am in a sitting position it can squeeze the pouch more and leads to leaking. Maybe I am wrong on that one, I don't really know. Lastly I wish that there were people in my area in Ontario that had pouches but I have not met one. About 6 months after my surgery the stoma nurse at the hospital told me that she had a woman who had moved into the area who had an Indiana Pouch who was wanting to meet someone else for support. I had clearly told the stoma nurse on many occasions that I would love to support anyone else in this position and yet she had totally forgotten about me and did not give the woman my name and number that I had left with the stoma nurse for such an occasion. Blew my mind but such is life! I promise I won't write so long again, I only write every now and then so hopefully you can forgive me. Overall, I had 2 boys 6 and 12 when I got cancer and I am cancer free for 4 and a half years , and they could hang bags and pouches from my ears if they wanted if it meant I was around to see them grow up!
I am too blessed to be stressed..

Well, a 'real' bladder would certainly be preferable to my neobladder - but not by much.

Sleeping the night thru is a fond memory, though I get up only once nightly to pee.
And it seems I'm one of the fortunate ones when it comes to sex as nerve sparing actually worked, so though it is a bit different, I'm happy as a clam in that arena.
And I have no problems peeing.

As far as doing anything different, I wished I'd had my RC surgery done sooner, given my high grade cancer diagnosis, that I'd found USC/Norris sooner - just to be on the 'safer' side.
I certainly wish I hadn't started eating solid foods so soon after surgery, so as to have avoided the bowel obstruction (that sucked big time).
I wish I had eaten a better diet throughout as a youngster, maybe (just maybe, though probably wishful thinking) it would have prevented my blc.

But these are nits, really small nits. Fifty years ago, I'd probably be dead by now, 2 1/2 years after surgery. So I'm not complaining.

Patricia, it is a real blessing to have some veterans on these boards. Your experiences and advice are tremendously helpful. I make it a point to read every one of your posts.