Long term indwelling Foley catheter - anyone?

Hi..,

I have suffered from insconstinence since november 2008,
along with weak urine flow.
It grew worse may 2009 - blood cloth before urine flow -
so obviously I had a prostate problem.
I also started to feel intense thirsty - no matter how much I drank.

In june 2008 an urologist examined my kidneys with ultrasound and
found both kidneys " filled up like balloons".
She immediately ordered Foleys catheter, which turned out to be easier
said than done...!
Nurse gave up after second try, but by doctors assistance they finally succeded
third time.
Much blood&pain though, but got better after a couple of days.

The urologist nearly forgot the DRE examination after the catheter problems,
her verdict here was: "largest prostate I've ever felt" ......
"You don't need any scintigrafi, You start immediately Zoladex 10.3 every 3 months,
if/when You get to feel bone pain You are welcome back for palliativ radiation".

No casodex offered me before starting with Zoladex.

A few days later I got an appointment for scintigrafi,must have been an administative failure,
scintigrafi was negative.

I replace my Foley catheter every 3 months, I use to empty the balloon and remove catheter by myself on beforehand,
hoping that the urine flow has improved , but only to experience the opposite situation:
now there is a complete stop,no urine whatsoever comes through...

Then ,with the help of my local doctor I get the catheter replaced.

I am using a level operated catheter valve,MUCH more convinient than the traditional (?) catheter bags.

Gone are my thirst and kidney problems,and the Foley catheter with valve is no nuisance at all!

My consideration now is my increasing psa numbers,and for how long can I wear the Foley catheter
before I get bladder or kidney problems.

As for now, I generally feel better than I've been for years,biking and walking for miles is
no problem at all, and only some rare hot flashes reminds me of the Zoladex injections.
Which I will have to stop anyway - perhaps try Prostasol next?

Abiraterone trials are in third stage now, seems promising,but as I live in Norway I'm not entitled
to join any trial, the nearest site beeing in Sweden.

So - what are Your year long Foley catheter experience?

Thanks for reading..,

I am definitely King of Catheters here, but not a proud title. I had open Prostate surgery in October 2008, and I am on my 15th catheter.

The first 9 were foley catheters for a total of 101 days. The last 6 have been suprapubic catheters, they exit just below to the left of my belly button. Surgery was performed on Oct 1 to install it, and there has one been in place continuous ever since.

My problem is that I have strictures or blockages caused by over-scarring in the bladder neck itself. I have had 2 emergency dialations and 5 corrective surgeries to "fix" the problem, but so far, the bladder neck keeps closing up in short time. I also under went a heavy dose of salvage radiation treatments in October and November of last year, which only has made the problem worse.

Here in the US, long term catheters have to be changed out in 4-6 week intervals, for sanitary reasons and to keep down urinary tract infections. I couldn't imagine any doctor here letting a foley stay in for 3 months at at time. It is generally accepted here, that a foley catheter passing through your urethra is more prone to infections than an SP catheter like I currently have.

What is this "level operated catheter valve" you mentioned? Haven't heard of that before.

Do you have trouble with bladder spasms, and if so, how are you treated for them in Norway? I have been on the drug ditropan since the start, but still have suffered literally thousands of bladder spasms over time.

Right now, I have too much radiation related damage to consider any more surgical appoaches to fix what is wrong with me, so I will remain on catheters on a month to month basis until a perm solution can be found.

You are not alone, that is for sure.

Please keep us posted of your situation. Did they every estimate how large your prostate was in cc?

David in South Carolina, USA

Thank you, Bjorn.

My urologist surgeon and I have discussed urethral stents before, and while it would work at the onset, he has seen them become embedded in the flesh, and then it requires a messy operation to remove it, and the end result is total and perm. incontinence. Sound it didn't sound like a solution I would be interested in. There are other reconstructive type advanced surgeries that could be done, but right now, as long as I am still having post-radiation damage issues, any of these surgeries are out of the question. My dr and I are hoping that at some point in the future, I will have healed enough to entertain a more perm. option.

I wish you well. Looks like you are full 20 years older than myself.

David in SC