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Incontinence - after Neo bladder

7 years 4 months ago #42072 by Sled Ed
Hey There Mike

Hope things are well for you too!! It is nice to take a peak around at some threads and see so many of the same people interacting and continually helping others!

I am taking a trip back east to celebrate my 60th with a large party of friends and family. Making 60 had me concerned for a bit back there but not anymore. I truly feel great and am able to enjoy ALL that life has to offer and wishing the same for you!!

PS I hope you never forget...'cause I never will that you really helped me out. Had it not been for your constant updating and feeding threads I would not have been able to have the vital info I did..at just the right time to keep my bacon above the topsoil..lol

Eddie

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7 years 4 months ago #42039 by mmc
Hey Eddie!

Glad to hear you are doing well!

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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7 years 4 months ago - 7 years 4 months ago #42029 by Sled Ed
Hi Brett,

As much as I would love to say that I've got the answer..I just don't! I am 2 1/2 years post RC and found that I love my sleep so I take the easy way out and use a condom catheter hooked up to a bag each nite and guaranteed to get some sleep. I tried for a short period to set the alarm clock every couple of hours than simply made a decision to accept the new me and opted for a sleep filled nite. My daytime is perfect. I rarely leak and stopped using a pad ages ago.

I would like to take a moment to say 'Hi' to all of you. It has been quite some time since I've posted here but have never forgotten the help and genuine caring that I have received from this great site.
I remain to this day so so appreciative to you all. My journey would not have been the same if not for all of you people. Teaching me to be my own advocate remains the greatest gift you have given me and am convinced were it not for this site I would not be here today.

Life is so good for me in spite of the curve balls I've been thrown.

I truly wish the best for all of you!!!!

Eddie

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7 years 5 months ago #41917 by GKLINE
Brett
I know the incontinence thing is frustrating. You will get ALL sorts of responses on this. Man! I wish I could tell you how to stop the leak. But I can't.

I had the same plumbing system installed that You have. Almost 5 years ago. And I still have nightime accidents. I still get up twice every night, and still have some leakage at times.

During the day, I am usually on a good schedule and have no problem. But.... Every once in a while I lift something or strain just right and........ "leak!"

Everyone is different in this dept, and some guys are going to tell you they are NEVER incontinent. I am so jealous! I guess you just keep on doing keegles (as you are) And keeping to a schedule....... You are what you are!

The best advice I have is keep on doing what you are doing....cuz you are doing it right. And if you keep on getting more control.....good for you!
If you only get what you have now...... You are still doing Great!

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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7 years 5 months ago #41916 by Brett
Hi Guys,

I am Brett from Australia and had my Bladder and Prostate removed and a Neo-bladder created in December 2010.

It has been a while since I was last on the site and hope you are all doing well. Except for a few minor problems I am doing fine and feel great. Had by 12 Month check up in December 2011 and all was fine.

I was wondering if anyone could answer a few questions for me on the exercises you do/did as i seem to have had a different path than most of you with regard to incontinence.

It has been 15 months since my Neo-bladder and I still have incontinence problems. Normally I go anywhere from 2 hours to 2.5 hours between voiding and on the rare occasions recently up to 4 hours. At night this drops to 1 to 2 hours with once every couple of weeks I may go up to 3 - 4 hours between voids. I have never used a cath to voide and have a minor drip as a reminder that it is time to go. I have just started having to push a bit harder to void when I do go. I don't have to set my watch yet as I can't just hold it in.

I am seeing a physio and have been doing the excercises from the start. Sorry to get a bit in depth here but I want to explain it simply so you can steer me in the right direction.

Every day I do 14 retractions of the Penis standing in front of a mirror holding for 10 seconds each time. I then drive to work. On the way to work, obviously sitting, I lift and hold my Anus/sphincter 15 times for 10 seconds a time and then again do the penis retractions 15 times for 10 seconds each. In the afternoon I then drive home and do these 2 exercises 15 times each again.

I notice by your stories that you only had incontinence on the main, for 6 to 8 weeks after the cath was out. Am I doing enough or not enough excersies. My physio says yes but it seems there is a bid difference in your outcome to what seems to be almost the norm in Australia.

Thanks in advance for any help you may be able to give. Again sorry for getting a bit graphic.

All the best.

Brett

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