New Neobladder

10 years 9 months ago #44898 by wsilberstein
Replied by wsilberstein on topic New Neobladder
As far as flushing, I've never had to flush since the catheter was removed. I used saline for irrigation which is much easier to get than water. Maybe it's less expensive. Mine was covered by insurance. My incontinence supplies; however are not covered and are running about $150 a month.
As far as potency, I haven't had an erection since 10/09 after the urethroplasty, so I told my urologist no need to worry about nerve sparing for the neobladder since nothing works anyway.
As regards incontinence devices, I think I've tried every variety known to man. I'm not sure how the Cunningham clamp differs from the j-clamp. I use the j-clamp when I get out of the shower and when I transition between devices. After 1.5 hours I start to have intense penile pain, and I leak even with the clamp set on the highest setting after I've been wearing it for a while. I had to use it for my last CT scan so that I would retain dye in the bladder.
During the day I use the AFEX system which is essentially a semi rigid funnel in the underpants that attaches to a bag. As with all the devices, I have to change positions slowly to avoid yanking my penis out of the device.
During the night I use the GeeWhiz, a condom catheter that attaches to the penis with a silicon strip and tape over the condom. Although I think I've mastered applying it so that it's unlikely to detach, reapplying it is not so easy that I would chance using it at work. I have an overnight bag and long tubing. The AFEX wouldn't be good for night sine it doesn't seal with the body, although I find mine does form a suction. In any event, I find all the devices become irritating after a while, so that switching from one to another gives the sore spots a break, since each device irritates in a different manner.
I've also switched off to the McGuire type device, but it holds too little to be practical and the outlet is a screw cap which guarantees it will get lost and you'll get pee on your hands. It comes with a leg bag, but the tubing is too short to put it down on the calf. I'm working on getting different tubing to which I'll try to attach the connector.
-Warren

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician

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10 years 9 months ago #44895 by redeye
Replied by redeye on topic New Neobladder
I figured it was a long road but was curious about your experience
The flushing I was referring to was catheter flushing the NB,
still daily for me but I have had to use sterile water and it is expensive
I agree with the coffee, being a diuretic it stimulates getting rid of water
Due to me thinking about chatheterization flushing, your humor about scotch was really funny. Oh! did it burn though!
Thanks for your reply and making me feel at ease about asking anything
Gil

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10 years 9 months ago #44893 by GKLINE
Replied by GKLINE on topic New Neobladder
Gil
You are welcome to ask ANYTHING on this site. It is the law here that everything is inbounds and can be discussed.

As for Neo flushing........... Scotch seems to work rather well.
I do drink a lot of water during the day and I have never tried distilled water. So that may be a new avenue. I never seem to have a firm idea of what creates a clear stream. There are times when it is all mucous and times when there is no mucous. Coffee seems to offer a stronger bladder reaction and stream. But even after 5 years, I get different results each time I use the men's room. I just kinda live with it and thank God I'm still here to complain about it.
But. I have had no ut infections and I completely empty my bladder, so I check the box that says "If I had to live the rest of my life with the urinary system I have now " I always check "Delighted" I am happy with the cards I have been delt on this one.

As for the erectile disfunction after surgery........ Oh Yeah! This one can get you Down. Assuming that you had "nerve Sparing" surgery as I did..... This is a kinda long road to recovery. It takes a patient partner and a good sense of humor for a long time. In my case.... 18 months before I had ANY confidence at all. And those blue pills became a crutch. Even now, after 5 years, I'm still not where I was before surgery. But I'll take it. And we keep working and practicing because it is a muscle after all.

I hope I helped. But, as you can see, It will take some time and some patience and you must be able to laugh at yourself.

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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10 years 9 months ago #44889 by redeye
Replied by redeye on topic New Neobladder
George,
Please read my reply to Warren as history
I replied to you as I have some questions
From a Veteran survivor, congrats with your five free years
I suspect your good natured humor has lots to do with this
I'm curious and haven't asked my doctor yet
Have you ever switched to distilled water for NB flushing?
Did your NB ever stop making mucous?
And more delicate Is there hope for sexual function returning?
sincerely
Gil

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10 years 9 months ago #44888 by redeye
Replied by redeye on topic New Neobladder
Warren,
I too have recently had a Radical Cysto. After the Foley came out I had exactly as you described drippage and gushes upon movement and especially going from sitting to standing.
I began using a Cunningham incontinence clamp for times I would be out and about to keep things together It worked for me it has been now 2.5 months since my procedure. things are getting better very slowly and i am using the clamp infrequently now.
I agree with you about the underwear
I have been using Guards from rite aide
they insert into your regular underwear (tighty whitey)
Still have some issues but they have never leaked into my day clothes
Only have some problem at night
I hope you will get some useful info from my reply
Gil
tumor removed 2009
BCG protocol two years
tumor returned and removed 2011
BCG protocol
muscle invasion tumor
Radical Cysto with neobladder March 2013

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10 years 11 months ago #44595 by dukel
Replied by dukel on topic New Neobladder
Warren, I just posted on your other thread before i noticed this one. Sorry, but please read. Hope you are doing better!

P.S. Hey Jim! It's good to hear from you. It has been a while. Hope you are doing well. You look like you are doing great in picture.

Wishing both you and Warren the best!
Duke

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