New neobladder frustration.

15 years 1 month ago #24297 by GKLINE
Replied by GKLINE on topic New neobladder frustration.
I just caught on to this thread and I wanted to jump in and say HI and not to worry. Initially I had very high expectations and was quickly disappointed by incontinence during the night. I am six months out and I still have trouble at night sometimes. The keegles help but I still leak.
But I know it will get better.

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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15 years 1 month ago #23969 by mmc
Replied by mmc on topic New neobladder frustration.
Well it has been three months and I am happy to report that I do have daytime continence and I can wait WAY longer between bathroom trips than I had in YEARS. Like many men in their 40's or above, I had an enlarged prostate that sent me to the bathroom many, many, many times a day and night.

Night time isn't great yet but I alternate between using condom catheters with a night time catheter bag and using the pads. If I use the pads, I set the alarm for every three hours. The pad is usually soaked but the bed is not. WIth the condom catheter I sleep all night long, which I consider to be a luxury! :) Thanks again for the support!

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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15 years 4 months ago #22106 by timb
Replied by timb on topic New neobladder frustration.
No probs at all Mike. All being well, you'll be saying the same things to someone else a year from now. best of luck. i also found it takes some time to get the right pads and things. i have a brand i use at night that works like no other! so experiment a bit with those. i never felt embarrassed getting these things from the chemist (pharmacy!). when i go in i just fix in my mind the idea that ive come through a nightmare, the likes of which many people would find hard to contemplate and that ive still got my sense of humour and a normal life. that makes me feel proud and makes it feel easier.

good luck sir!

tim

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15 years 4 months ago #22098 by mmc
Replied by mmc on topic New neobladder frustration.
Thanks Tim, Harry and Margot!

I started with the Depends with an extra pad inside. I find I can sleep on my side that way without leaking on bed pad.
Still waiting to feel the sensation of going. I really don't feel it yet. I just start to notice that I feel wet.

Still get up at night and try and follow a regular schedule during the day but as you said, if it's already leaked out then there isn't much left to go.

Anyway, this site is amazing due to the great folks willing to answer questions and share experiences. It makes such a huge difference my state of mind about everything and really helps keep me positive.

Thanks again to all who have ever contributed any thread on this site!!!
:D

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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15 years 4 months ago #22097 by harry s
Replied by harry s on topic New neobladder frustration.
Having the cath removed is good news! Don't worry, the daytime continence will come. Harry had his surgery a year ago. He is fine during the daytime and has been for quite sometime, but he is still incontinent at night. He does get up 2-3 times a night, but he since he starts leaking as soon as he falls asleep (he is a deep sleeper) the trips to the bathroom don't really help much...not much to come out after it's leaked! He wears Depends with an additional pad that he changes when he does get up. He's taken this in stride and has gotten used to the inconvenience of it...really not that bad...Give yourself healing time and be happy with small steps in your recovery, things will get better with time. Harry and Margot

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15 years 4 months ago #22082 by timb
Replied by timb on topic New neobladder frustration.
mike
that sounds totally normal to me too. with me it seemed to go in one end and right out the other when the catheter first came out. this went on for a week or two and gradually got better but still just poured out if i stood up too quickly. even at 3 months i still wore a pad when out and about as getting out of cars and overstraining could make me leak. nowadays i don't wear any pads during the days (im 2 years in, almost exactly) and im 100% back to what i was before the op in the daytime. i cycle an average of 6 or so miles each day to work and back and my confidence is 100% without a pad. nights i still wear a pad but its just part of my regimen now and i do get dry nights.

hang in there, it'll get better. you are at the very beginning. I couldn't believe it would ever get better but when the big improvements happen its like a light going on. one minute you feel like you're clenching all the time to keep it in and suddenely you're not even thinking about it any more. its good you feel frustrated. it'll spur you on to getting through the training period and doing the kegals. they really helped me at the beginning and you can see the difference. can't say i do them now though!

tim

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