Radical Cystectomy - Yes or No?

My husband had a neo bladder on October 4th last year. Like yourself he came home with lots of tubes etc. Including a bag with kidney stents. He had them put back into his body 6 or 8 weeks after op. We cannot remember everything but the new bladder is now a complete success, he only has to self catheterise once every 4/6weeks at night he dies wear pads but mostly dry, daytime is dry all the time & he is even getting a sensation to urinate, he does sit down as this is easier. Unfortunately after op he had to have chemotherapy which was so awful he couldn't finish but the new bladder just gets better xxx such early days fir you Mr. Prince. Onwards & upwards. 

Mr. Printer, sorry for spellings I have list my glasses x

Hi Polar 

I wish you well for the op Friday, healing thoughts your way 

So sorry I missed this, it’s been agreed I keep the bladder till I have CiS return as so far low grade recurrences

im for for another turbt and deep biopsy on an unidentified row of dark cells.

My last op was Feb, this will be op 10 and I’ll watch as I’ll have spinal block again.

wish you well x

Hello Again Everyone,

I had my urinary catheter removed yesterday and so am now trying to train my bladder. Unfortunately I am having trouble holding my urine. It is fine when I am sitting but as soon as I try to stand I get terrible leakage. It is so bad I am having to change my pads every few hours. I have been told to try and hold my urine for 2 hours but at present I can't hold it for 1 hour. Does anyone else have this experience?  Is this normal in the early stages?

Also I have heard a lot about self catheterisation but when I discussed this with my consultant yesterday he said there was no need unless I had problems so I haven't been shown how to do this. Again, does anyone else have this experience?

I know I have t be patient and work on my new bladder but I can't seem to hold it at all at the moment.

Hi

It's one of the reasons I went for a stoma. However, it's still early days and try to persevere. I would certainly follow up the self cathetering, a fellow I was in hospital was taught that before he was discharged and before the secdonary op to reverse the temporary stoma. If you have a CSN I'd give them a call.

Hi Ianw,

Thanks for your reply. Yes I realise it is early days and I will persevere. Its just I wasn't expecting to have quite so much leakage and I was wondering if it was normal.

Regarding the other points, my procedure has seemed to follow a different route from others I have read about or spoken to. I was sent home with a urinary catheter and a super pubic catheter. The super pubic was removed 2 weeks ago and I then managed the urinary catheter for 2 weeks, flushing with sterile water to remove mucus, until that was removed yesterday. As I said I discussed in detail with my consultant and with the continence nurse about the self catheterisation and both were adamant I didn't need it.

Fingers crossed it gets better.

Hi Pringle35,
I had a Neobladder constructed 2 years ago and initially I had a lot leakage at night but only a little during the day. Things improved steadily and I now have no leakage at all and do not wear pads at night as my body wakes me every night for a wee.

As for self catheterisation, I was shown how to do it and it was actually mandatory that I showed my urology nurse I could do it before they would consider performing the Neobladder op.
However, I have never had to do it since I completed the bladder training once the catheter was removed.

cheers
Chasam

The early days of neo training can be very difficult. Changes in position are triggers for leaks because of the pressure on the abdomen as you move. I developed a technique of levering up from a chair using my arms, to avoid leaks. Also walking very carefully. Even if you are leaking, neo will be filling & gradually expanding - I was told to try to hold on a bit longer each time despite leaks. If 2 hours is really impossible, see how long you are dry and start from there, but you might find progress is slower & of course you will need to go to the toilet more often. I planned to do anything active straight after emptying, but then sit down when started to feel full & leaky. That way I could manage to last a bit longer before feeling so uncomfortable/leaky that I had to empty. How are you doing with managing to void? 

My hosp required me to keep charts & measure intake/output as well as self cath, so they could assess if I was fully emptying. They can also tell with ultrasound scan. If your hosp is happy with that, don't worry about self cathing, I'm sure they will teach you if it becomes necessary. 

Have patience, I'm sure you will start to see some improvement soon.