Barbara, I hope I am not responding too late to your question...six months after my surgery I returned to my previous job, have a long commute and so don't get to this website nearly as often as I would like. I didn't read all the threads to see when your sister is scheduled to go and if she has made her decision.
I don't know how old you sister is but I am 57 and got an Indy Pouch in summer of 2007. I did lots of research and asked lots of questions both from individiuals on this forum and from individiuals in my area who had both the Indy Pouch and the neo-bladder. I also would have liked to have been given the neobladder IF it would deliver to me what I wanted...the best quality of life. For my situation, being who I am, it could not.
Everyone I learned about or who I contacted personally who had the neo (about 15) has had to catherize themselves on a regular basis. I asked my doctors at the University of Washington (Seattle) why the doctors were doing more neo's than the Indy Pouch...and was told it is because the Indy Pouch is a more complicated procedure and not many doctors know how to do it and do it well.
My surgeon, Dr. Paul Lange, who was the head of the Urology Dept. at UW, would not even consider giving me a neo...he told me that he firmly believed that the Indy offered women the best quailty of life...that other doctors disagreed with him, but that was his firm belief and he would not give me a neo even if I wanted one. He said the neo for men works much better...he said it works much better for them because they have a longer urethera. If you look at a diagram you will see the males have almost twice the length that we do, therefore, the doctors have more material to work with.
I have had my pouch over a year now and have been very happy with it. I obviously made the best choice for myself. But we are all different..that doesn't mean everyone wants or can tolerate the Indy pouch...much of it depends on the skill of the doctor, whether the patient's condition will allow it, the attitude of the patient, and possibly other factors. And as with all of these diversions, there are always the possible side effects. I'm not sure that there is any one of us who goes home after a bladder removal surgery and lives happily ever after. But we are living and thankful to still be functioning as best we can. I think I was extremely lucky to get a very good surgeon who had experience with the Indy pouch and is a perfectionist. I hope your sister has an excellent doctor who can deliver good results....in other words deliver what he promises. Remember, he isn't the one who has to live with the results, she does. Take care... my prayers will be with her, that she makes the best decision for her future well being. Melodie
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