6 replies to this topic

[graphic]

I'd like some advice if possible, but a bit (or a lot) of background info first:
* I started wearing condom drainage 26 years ago...hated it from day one.
* Started SIC about 15 years ago but still had to wear condoms because I sometimes
leaked a little between cathing.
* Urologist suggested an artificial sphincter about 10 years ago and gave me a
sphincterotomy before fitting the implant. This worked well for a short while but then it
packed in. Had it replaced but the second one failed.
* Was left having to do SIC and wear condoms again but leaked far more than before the
op.
* Had a stricture and have had a few sphinterotomies, the last one being two weeks ago,
because I keep getting scar tissue which narrows my urethra.
* Before the last op I was only able to use a size 8fg catheter and could not even slip this sometimes. Sometimes my bladder filled so much before I could empty it that I'd have cold sweats and a headache. The annoying thing was that I was still wet in between SIC.
* Since the last op I'm leaking so much that I can't even take my condom cath off to have
a bath because I leak all over the place when I move about. Consequently I'm having to
change my condom and wash my bits perched over the toilet.
* To make things worse I've had to change my regular condoms because I need one with
an opening wide enough to take an 18fg catheter. I've tried every sample I could get hold
of but can't find one that I get on with. My skin broke down quite badly last week, even
though I used non-latex condoms.
* I slipped a foley catheter in last Friday because I was at the end of my tether and the
weekend was so stress free I've decided to keep it in for a week. If all goes well I'm
thinking switching to indwelling drainage on a permanent basis. At the moment it feels
incredibly liberating to be free of condoms, SIC etc., and my skin is healing quickly and
is getting a 'normal' texture which it hasn't had for years (somehow it's always looked thin
since I was using condom drainage)

Sorry about the long background info but I thought it might explain where I'm at right now.
I'd like to know if any long term indwelling catheter users have experienced any problems
other than UTI's and bladder shrinkage. Also, does anyone know how long it takes before the bladder shrinks? I had a clam the same time as my first artificial sphincter and my bladder can currently hold 600mls minimum. I won't consider a supra pubic because I've had a couple in the past and am too squeemish to look at the tube coming out through my skin...I'm a bit of a baby! I haven't discussed switching to permanent indwelling catheters with my urologist yet because I know she'll be against it, but then again she doesn't have to live with the day to day problems I'm having, which are really getting me down, so I thought I'd try and find as much info before I discuss it with her. I'd be grateful for advice, both positive and negative.
Clive

[Lol Hare]

i've had a suprapubic now for 7-8 years and i don't hardly notice it's there,you'll get used to it!! if you have it for good,i'd put really good money on you never regretting it in the long run,you wont look back,touch wood i've not had an issue with it for 5 years now..

[graphic]

Thanks for he input but I really am a baby when it comes to open wounds, needles etc. I've even been known to pass out when giving blood.
The last time I had a suprapubic was after my second artificial sphincter was fitted and for me it was the worst part of the whole procedure. I had some skin granulation form and it had to be cut away with a scalpel and when I got home I couldn't even look at it without feeling queasy. I used to clean the area whilst looking away. I honestly don't think I could learn to live with it.

[CR_L1]

Hi Graphic,

I’ve been an indwelling user for the past year & as yet have had no problems with it unlike I did while intermitting, I was worried at first because of the scare stories I had heard about using indwelling caths.
One of my best mates is a para & he has been using indwelling for the past 22 years & tells me he has never had a problem or UTI.
The main problems I had with intermitting was UTI all the time because of the environment I was doing it in but since indwelling nothing & for me its been the best thing I’ve done so far.
As I have said in other threads it’s a personal choice & you got to go with what works best for you.
All the best
CR

[graphic]

Thanks CR, it's good to hear from someone with a positive experience after reading so many negative posts on indwelling caths. If I can go a year without a UTI I'll be very happy. I've had mine in for five days now and it's felt as though I'm on holiday. No worrying about leaking, skin breakdown or condoms blowing off and I'm able to enjoy a leisurely bath and wash my bits properly. The main thing I'm worried about is bladder shrinkage so I think I'll get a valve to control my output. If things continue as they are then I think this is definitely the way forward for me.

[CR_L1]

Hi Graphic,

Be careful of to much bathing though, I was told that is something that can cause UTI showers are best.
CR

[graphic]

Thanks CR, I'll take care. I prefer a leisurely soak if I've got time, prefer to shower if I'm in a hurry. A quick shower usually ends up taking anything up to an hour!
Clive