Leakage during neobladder enlargement

1 week 5 days ago #61554 by Remittub
Replied by Remittub on topic Leakage during neobladder enlargement
Thank you for your reply Sara.Anne.  !!  I am under no illusions as to how long this will take !  I suspect that I'm at the start of a long journey.  I also posted on the UK Macmillian forum, and one contributer said to avoid movement which tends to bring on leaking.  (This is EXACTLY what I am experiencing).  So I am planning to go and lie down at the 35 minute point and then concentrate on "holding on" for as long as I can, and see how that works !!  Again, many thanks for your reply !

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1 week 5 days ago #61553 by sara.anne
Replied by sara.anne on topic Leakage during neobladder enlargement
I have not had a cystectomy, but have certainly heard from a lot of people who have.  Based on their experiences, it takes a LOT longer than 6 weeks to train a neobladder.  It is the sort of issue that takes a lot of patience and persistence and I truly admire all of you who go through this.

Please be sure to share your concerns with your doctor.

You can do this!!!

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 6 days ago #61552 by Remittub
Leakage during neobladder enlargement was created by Remittub
Hello, I had my bladder removed 6 weejs ago and am now attempting to enlarge the neobladder.   I was told to use a flip-flow tap on the catherter and keep the tap closed for an hour, then release it and measure the output,  When I can manage an hour, then increase to an hour and half, and then 2 hours, etc.  I understand that this would stretch the neobladder tissue and thus increase it;s volume.   My problem is that most times, I get to about 45 minutes, and it starts leaking - i can't seem to make progress.   What should I do ?  Is the catherter tube too small ?  Any suggestions from others who had this problem would be greatly  appreciated !

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