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An update and a few questions..

10 years 6 months ago #29639 by Sled Ed
Mike thank you a whole lot again!!
The document you recommended is exactly the sort of reading I'm looking for. I have read..reread and printed it off. Now I have a clue which way I'll be going. My surgeon wanted to see me with catheter out for a week before starting any new programs. I feel confident that I'll be leaving my appt with him monday with a whole lot of new instruction. In the interm this new document will start to teach me the way.

You da best!!

Ed

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10 years 6 months ago #29623 by mmc
Ed,

No it doesn't take a long time and they should have given you a schedule (how long to hold it between voids along with exercises for strengthening the pelvic floor muscle) when you got out of the hospital.

At first you should empty every two hours for a couple of weeks, then three hours, then four hours. This is just my recollection as I don't have my post op information anymore.

Here is a link to a guide: Achieving Continence with a Neobladder

Maybe somebody who had a neobladder recently can post what their schedule was. Night time is a little longer than day time in terms of how long you go without emptying.

Usually, the neo is 40-80cc capacity when you come home and by holding it longer over time, it causes the neo to stretch.

Then the doc should have you empty at your appointment and then do a scan thing like a sonogram in the office to see how much residual is left. This is to be sure that you are emptying fully because you can overstretch if you wait too long between voids. The overstretching can cause problems if it gets too big.

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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10 years 6 months ago - 10 years 6 months ago #29618 by Sled Ed
Hi KC
I'm still laughing that we have same birthdays!
Thanks for your good wishes..path results have had me on a high ever since.
Your info was great..these are the kinds of things that are important to me while I go through this adjudtment period.
I will try the assurance guards.

Ed

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10 years 6 months ago - 10 years 6 months ago #29617 by Sled Ed
Thanks for helping out Mike your first tip sounds real good..I'll try tonight.
I go back in to see my Dr monday and hope I get a schedule than. Is stretching your bladder a process that takes a long time?

Ed

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10 years 6 months ago #29614 by kcnorthstar
Ed,

Glad to hear about your path report. That has to be a big load off your mind.

I use Assurance Male Guards. They are a little wider and fit better than a lot of the other pads. I get them at Target.

The mucus should lessen over time. I had a lot of mucus after my RC, but it reduced down a couple of months after my RC. I am 3 and a half years out and today have very little mucus.

As far as bladder volume, I would follow the advice of your doctor. My neo only holds about 300cc, and my doctor said it was best not to strech it to far beond that. Your doctor may have other recommendations.

Hope you have a speedy recovery
KC

Age 59
DX Jan 2006 - T1B G3
RC - Neobladder June 2006

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10 years 6 months ago #29613 by mmc
Ed,

Welcome back! So glad to hear the good news. You are on your way.

At night, I put the pad inside the Depends. It seemed to hold more that way and then didn't leak out the leg part at the crotch.

Be sure to stick to your schedule for stretching the bladder.

Different folks have different experiences overall but mostly mucous is there forever. Some folks have less because of what they drink but I pretty much just live life like normal (aka before the bladder cancer). As you have more fluid (when it stretches out to 400cc) then it is less of an issue.

Yes, having more capacity will reduce frequency of leaking but do stick with the schedule the doc gave on how often to go and how often to get up at night.

It shouldn't cause more problem at night if you go right before bed and then stick with the schedule.

This takes a while to heal and stretch and get continence back. Be postive and be patient.

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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