very confused

Well, today is my last day of being normal. Tomorrow I start my prep for surgury on wednesday. Thanks everyone for the great information. I'm about 80% sure of going with the neo bladder. I'm still very afraid of the complications several people have had post op. I'm still not convinced the neo is the way to go. I'm going to play a round of golf today and go for a long motorcycle ride. hopefully I'll make up my mind...
Thanks,
George

I was going for the Neo but when my surgeon opened me up he said he didn't like what he saw for doing the Neo. I got the Indiana Pouch and things happen for a reason I am very satisfied with it. It's been over a yr now and I can usually go 5 hrs if I am not drinking any beers. Also now I set my alarm for the AM but most times I don't need it because I get this pressure in my pouch and I know I have to go kind of like when I had a real bladder and it wakes me up. You shouldn't just have to have the 2 opts the Neo or the Bag find a good cancer hospital that does all three if you really want the Indian Pouch. I was treated at the Univ of Penn by Dr. Malkowicz and he does like 250 RC's a year and capable of doing any of them. But in the long run it is your decision. Good Luck, Joe

Everyone goes through this tough decision. I'm not sure if this board has a searchable history, but many people have posted about this problem (including me). My Experience with a Neo-bladder has been very postive. I am 8 months post-op and pee every 3 or 4 hours. This is actually less often than I used to go and there is not the "urge" to go, which ironically is easier to live with. It is still neccessary to fully empty the neo-bladder to prevent infection and it does take me a little longer to urinate and there is mucous in the urine. Getting up at nite is neccessary and very common for everyone as they age, but the neo-bladder requires it. No big deal. My life is back to normal so far, and one quickly adjusts to the schedule of urination. There is a 2 to 3 month period of diapers and pads and learning to cope. It seems like a small price to pay now, and again I'm only 8 months post-op and 59 years old. It certainly seems more convienient now, as all the other diversions also need more care and at the same intervals. I think the operation takes the same amount of time for an Indiana pouch and a neo-bladder, and I don't think this should be a factor. There are risks with either diversions and you should be aware of them. If things go well there is no need for catheterization, but I believe there is a 15 % chance of that or other complications which is much reduced in younger people. The experience of the surgeon is also a big factor in the success rate. I do not use pads or diapers at all, but occasionly have a drip at night that leaves a tiny spot on my boxers if I go to bed late, drink a lot and am lazy about getting up. I can live with that.

I was watching the show "Hopkins" and it reminded me of my surgery and the anxiety I felt at the time (My surgery was at Hopkins). The whole thing is and was very real and frightening, but the anxiety has lessened over time. I know it will never leave me, but I live every day fully anyway...what choice we have? I believe in speaking frankly about my experiences and if you have any other questions let me know

Good Luck!
Michael

I am 49 years old and have an Ileal Conduit. I an glad that I have this diversion. My diversion does not prevent me from doing the things I want to do. I play basketball with my kids, I bike ride, I walk for exercise, I have jogged too. I coach high school football and the pouch and bag has not hindered my ability to demonstrate techniques or drills. The key is for me to leak my bag before I do and of these activities.
At night I hook to an overnight bag. The long tube gives me enough room to toss and turn with out any problems. I have figured out how to get the suction started when first connecting to the night bag, so I can even sleep on my stomach.
The only change I have is that I have to wear suspenders instead of a belt. My pouch is on my belt line and the "tupperwear lid" connection between my bag and pouch will pop off if I wear a belt.
If you have any specific questions on the Ileal Conduit, I am willing to share my experiences.


Take Care
Rick

im nearly two years down the line with the neo and my experiences have been very positive on the whole. it has its ups and downs and i had your horror at the prospect of having my bladder removed (completely rational let's face it!). I wondered how the hell it was ever going to work like a bladder and, to be truthful, am still pretty amazed. but it does a great job. i can drink beer, cycle to work (i do a fair bit of lifting and travelling between sites on my bike), have sex, travel, go out and do all of the things that i did before. i can't really remember what it was like to have a real one now. its just become a part of me that i manage slightly more than before. the two downers for me are, as pointed to above, the disturbed sleep (im getting pretty good at sleep-walking to the toilet) and a little bit of nocturnal leakage which may get better or may not. ive sort of learned to live with it. there's a corrective op which i could have to stop this but i don't really want to go through another op at the moment. a lot of my fear prior to the op was from the perspective of a person with a bladder and a person with choices. once it's gone, you just have to get on with it and it'll become just another part of you. i was also faced with the option between the neo and the pouch. the neo gives you much less of a reliance on catheters etc and i can actually pee standing up at a urinal which is good. you kind of control flow strength with your tummy so it's a bit different but works really well. also you're giving yourself the possibility of not poking things into your body all the time which appealed to me! the neo would be my choice all over again. i ve heard you can convert from a neo to a pouch but it's never ever crossed my mind. the truth is, if things go to plan, you end up happy with whatever you choose; each have their own foibles. a lot of it is in your attitude also. the hospital is a rollercoaster. i found myself crying at the slightest things and reached a point where i was turning down visitors i felt so wretched. little by little things gradually clicked back into place. we have amazing ability to adapt to things. about three weeks out i was walking in the winter sun, drinking hot spicy cider and starting to laugh again. I had amazing support from my partner which is really advantageous. so to all you guys considering the neo, I wish for you the same experience as me so far.

t

Will, I figured out what happened here on the forum, your topic is on page 3 of Georges topic,, I don't know how this happened, you are both having r/c 's and deciding on your deversion. If you read very confused and go to page 3 you will see what I mean..I still want to have you read Georges answers as they are all about deversions and how we all feel about the choices. It will help!!!! Take care,,,George went to our surgeon about his surgery,...Ginger