3 replies to this topic

[mandymac]

Hi
I am trying to find out if there are any women who have had long term urethral catheters without too many complications, and any any tips of how to keep it as healthy as possible from anyone who does have one.

I'm T7, 30+ years injured and never used any type of catheter till the last year when a tumour was found and removed from my bladder and i underwent a course of BCG therapy. Touch wood, no return of any cancer. However during this year i have had a urethral catheter, which i absolutely hated for the first couple of months, until i realised quite how much freedom it gave me. My life for 30 years had been ruled by the next accessible toilet and going anywhere unfamiliar was very stressful.
So I've now been travelling all over Europe, (and the UK where i live), having a lie-in on the weekends and all thanks to the urethral catheter. But now my spinal consultant has said it has got to come out and i must learn how to do ISC. I am really depressed at the thought of going back to a life of 3-4 hourly visits to the toilet and he says that it might even be more frequent to that, depending on how much bladder tone I've lost in the year I've had the urethral catheter.
Supra pubic is out of the question, cos if the cancer returns it gives it an escape route to the rest of my body, so i just want to keep the urethral one. I'm 54, less active (for transferring to unfamiliar toilets) than i used to be and find it a much better option, but my specialist urologist insists it will cause long term problems (infections, blocking, erosion of the urethra etc).

D Day for changing to ISC is Friday 7th Nov, so please reply quickly!!
thanks

[Tassievic]

mandymac, on Nov 1 2008, 08:59 PM, said:

Hi
I am trying to find out if there are any women who have had long term urethral catheters without too many complications, and any any tips of how to keep it as healthy as possible from anyone who does have one.

I'm T7, 30+ years injured and never used any type of catheter till the last year when a tumour was found and removed from my bladder and i underwent a course of BCG therapy. Touch wood, no return of any cancer. However during this year i have had a urethral catheter, which i absolutely hated for the first couple of months, until i realised quite how much freedom it gave me. My life for 30 years had been ruled by the next accessible toilet and going anywhere unfamiliar was very stressful.
So I've now been travelling all over Europe, (and the UK where i live), having a lie-in on the weekends and all thanks to the urethral catheter. But now my spinal consultant has said it has got to come out and i must learn how to do ISC. I am really depressed at the thought of going back to a life of 3-4 hourly visits to the toilet and he says that it might even be more frequent to that, depending on how much bladder tone I've lost in the year I've had the urethral catheter.
Supra pubic is out of the question, cos if the cancer returns it gives it an escape route to the rest of my body, so i just want to keep the urethral one. I'm 54, less active (for transferring to unfamiliar toilets) than i used to be and find it a much better option, but my specialist urologist insists it will cause long term problems (infections, blocking, erosion of the urethra etc).

D Day for changing to ISC is Friday 7th Nov, so please reply quickly!!
thanks

I'm 55 years old and have been in a chair for over 30 years too. I haven't had long term urethral catheters past about 10 years, but thought I would reply with my opinion because you haven't had any replies as yet.

What is preventing you from telling your uroligist that you would like further time to be able to make your decision as to what to do?

If I was in your position I would rather risk having the odd blocked catheter, or infection, rather than having the constant worry of never having that freedom that you have now. Others may disagree with me, but I think having a bit of quality in your life sounds like a better alternative, than worrying about whether you might get an infection or whatever.

My Dr was furious at the idea that I wanted a supra pubic years ago because he said the incidence of getting bladder cancer was a lot higher. I didn't take his advice not to get a SPC and I am so happy that I didn't. I have had one for about 20 years, and so far haven't had any problems.

If you were to clamp off your catheter to keep the bladder toned, I don't see why you would have blocked catheters and infections all the time. Are you doing that now? You would probably have exactly the same problems that you do today in 10 years time as well. In other words, if you keep your bladder toned by clamping off then I don't see you getting too many extra problems in the future.

This is just my opinion, but I hope it helps with your decisions.

[Kathleen]

mandymac, on Nov 1 2008, 08:59 PM, said:

Hi
I am trying to find out if there are any women who have had long term urethral catheters without too many complications, and any any tips of how to keep it as healthy as possible from anyone who does have one.

I'm T7, 30+ years injured and never used any type of catheter till the last year when a tumour was found and removed from my bladder and i underwent a course of BCG therapy. Touch wood, no return of any cancer. However during this year i have had a urethral catheter, which i absolutely hated for the first couple of months, until i realised quite how much freedom it gave me. My life for 30 years had been ruled by the next accessible toilet and going anywhere unfamiliar was very stressful.
So I've now been travelling all over Europe, (and the UK where i live), having a lie-in on the weekends and all thanks to the urethral catheter. But now my spinal consultant has said it has got to come out and i must learn how to do ISC. I am really depressed at the thought of going back to a life of 3-4 hourly visits to the toilet and he says that it might even be more frequent to that, depending on how much bladder tone I've lost in the year I've had the urethral catheter.
Supra pubic is out of the question, cos if the cancer returns it gives it an escape route to the rest of my body, so i just want to keep the urethral one. I'm 54, less active (for transferring to unfamiliar toilets) than i used to be and find it a much better option, but my specialist urologist insists it will cause long term problems (infections, blocking, erosion of the urethra etc).

D Day for changing to ISC is Friday 7th Nov, so please reply quickly!!
thanks

[Kathleen]

I know how you feel. My doctor is pressuring me to get rid of my foley have surgery and self cath. That is a lot to think about all at once. I have had my foley for 5 years now. He is worried about bladder cancer and damage to my bladder. I agree with the last post. You have to think about your quality of life. I know how stressful it can be to constantly think about where to cath, how much to drink, what to drink, will I have an accident. I know that the foley right now is my option.