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Unhappy with ileal conduit

6 days 58 minutes ago #57075 by Pando40
Thanks for all your info chris. Very helpful. I am 79 and just got the pouch/stoma. Hoping to find a new normal.
Bob

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6 days 15 hours ago #57070 by chnayeri
Pando40,

I don’t like the constant pull, on your stomach, the changing of the bag, the leaks,
Can’t sleep on my stomach. The pouch is made inside your body but you still have to drain it, that has leaks too.. for me being so active and movement. Neobladder is made inside your body, you teach yourself when to go, that has leaks too but you go normal, I rather wear depends until trained. For men who are in good shape and like their bodies, I think it’s the best. Just do your homework. You can go from neobladder to bag but not the other way. I should have bet on myself and surgeon..but It just been 2months running and hitting the weights and just being me with an extra piece of clothing. Think about how much products you need for each type ileal conduit, pouch or Neobladder.
Chris

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6 days 16 hours ago #57068 by Pando40
Whet is an Indiana pouch? Why are you unhappy with your choice? You did not mention

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1 week 1 day ago #57066 by chnayeri
Sara,

Thank you for responding....!!

Chris

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1 week 2 days ago #57059 by sara.anne
Hello, Chris! First, you may notice that I moved your post to its own thread, in a place where more people may see it. Second, congratulations on the news that it appears that they got it all!

So sorry to hear that you ended up with a diversion that you feel does not suit you. It seems that in many cases the urologists do not do their best to match the diversion to the patient.

Please remember that we are not doctors here, so take our advice accordingly. If you are really convinced that you need to change your diversion, you should seek out a major center that specializes in bladder cancer diversions and request a second opinion. This would be complicated surgery and you want a place that handles such cases. Not knowing where you are located, I would just suggest as examples the University of Chicago, USC, Stanford, MDAnderson, Johns Hopkins and Memorial Sloan Kettering. There are others.....you might want to inquire via telephone conference or email to get started.

Good luck

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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1 week 2 days ago #57058 by chnayeri
New to the forum, male great shape it has been 6 weeks since my surgery, I don't like my choice I made, I should have gone with a neobladder, but I did not do enough research, I guess I was in shock. I don't like the ileal conduit or bag. I want to go to Indiana pouch but not sure. Doctor says he can do that after 2 years. the Stoma Nurse being was very against neobladder and kinda scared me. But I wanted to get to my kids and wife as fast as possible, made a bad decision for all the right reasons!!

any input from anyone would be great, if this is the right forum.

Bladder Cancer Very Very aggressive, They think they got it all, CT scan negative now PetScan tomorrow.

Or you can send me to the right forum at a loss right now.

thanks, Chris

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