Needing a surgeon for RC

Jillo,

One thing the statistics that you will be looking at don't take into account is the skill of the surgeon. You will see many of us on this site pushing hard to get people to go to the top surgeons at the top hospitals.

Our reason for that is that those surgeons do the surgeries day in and day out and have more experience. If you are going to a top surgeon and you are only 44, then your chances of complications are much lower.

Along the same line, you don't want to be first person that your surgeon does using the DaVinci robot. If they have done 1000 surgeries but only a few with DaVinci, you want them not to use Davinci. If they've done hundreds with the DaVinci, then they have probably developed the necessary skills to be highly proficient with it.

Just something to consider....

Mike

Jillo...i will quote my surgeon Dr. Inderbir Gill...well no i won't as i can't remember his exact words...but more to the point.....I have a navel stoma...looks just like my belly button and in the same place...he explained to me that the skin is less likely to try to heal in that location than if the stoma is put elsewhere on the abdomen. The body thinks its a cut and tries to heal when on the abdomen. But not everyone has that problem so i don't know if its the skill of the surgeon or a persons particular physiology?? I've never had a problem with the navel stoma. In fact it looks so natural you wouldn't know i had an Indiana ..i always carry papers with me just in case something would happen to me and i couldn't tell them. As far as ileus goes...that happens but rarely does it require another surgery..it clears up on its own. And it doesn't happen to everyone.
I think Gracie is right...talk to Konety and then make your decision. You're very young and you'll adapt very quickly to whatever you choose and you'll heal much quicker than the average person who has bladder cancer and a diversion. Statistics take into account all the ages...and most of them are over 60 so when reading stats take that into consideration.
Pat

Jillo, Dr. Konety is an amazing doctor - he is the head of the Urology Dept there.

I believe we all adapt to whatever diversion we pick. And you will too. The cathing procedure for the Indy is not sterile but you do need to have it clean. I'm 2 years out and I only get up once during the night. I do not have any leakage and do not have to sleep with any pads or diapers. I have not had issues with scar tissue, obstructions as you mentioned - althought these may occur.

I believe there may be some issues with any diversion and this is a really big decision for you.

I highly recommend the Indy to women needing surgery. Maybe a visit to Minnesota would provide some answers for you.

Gracie

Oops, that was a typo. Missed that last "a" in Indiana. I am 44. I know it's a big decision to make. I'm a bit on the lazy side when it comes to taking care of myself. I like things quick and simple. Which worries me about the Indiana pouch because I know it takes devotion and I hate losing sleep. I've read about the problems with scar tissue on the stoma and trouble with obstructions. Are these complications common?

Indiana..Jillo...not Indian!! Now you sound like most of the nurses i run into here who have never heard of it. Its called the Indiana pouch because it was invented at Indiana University so obviously they do it!!
Its great that Konety is at least where we can find him now..i lost track of him after he left UCSF..Thanks Gracie for that info.
I don't know how young you are Jillo but ya gotta train whatever you get. Surgery just a bit more extensive with the neo and Indiana.....but hey i was sitting up and putting curlers in my hair by day 3.....was sore but bearable. Training the Indiana just left me a bit sleep deprived until i got it to 4 hrs which took 4 weeks..and watching my input of fluids at night let me extend to 6 then to 8 hrs of uninterupted sleep. Now i don't even think about it..i actually think its in a better place than it was...my girlfriends all have to wear light pads because they leak whenever they laugh too much or sneeze!!..No problem for me!
It also has a valve which prevents back up into the kidneys..thats a real plus. I've never had an infection. But then i had a #1 TOP SURGEON who knew how to do it right.
Whatever you decide you will figure out and it will be second nature in a short while. I had a horrible time making the decision but was vain enough to not want to mess with an outside bag..but thats me......I knew i didn't want the neo after i read the success rates with females..if i had to cath it wasn't going to be in an inaccesible place..again thats just me.
pat

Thank you Gracie and Pat. I actually found the email address for Dr. O'donnell on a post from about a year ago. I sent him and email and he already responded. He confirmed that he does perform the Indiana although it's the least performed out of the 3. I'm also happy to hear about Dr. Konety at the U of M. That's my hometown and still have all of my family there so that might be a great option. Now if I can only make up my mind between the Ileal Conduit and the Indian pouch.