6 replies to this topic

[hhache]

I'm a male 24 years post C5 injury.

I'm generally healthy with very little problems. No UTI, etc.
I cath 3 times a day and get quite a bit of output (500+ cc)
For 22 of those years I wore an external catheter and voided between caths. I would get a "flush" feeling, my lips became pale and 30 seconds later a good stream of urine. I was fine with this.

Last 2 years, I CAN NOT VOID at all! Not a drop of leakage. Some of you might like that, but as my bladder gets full (600 cc up to 800+ cc) I get REALLY, REALLY, REALLY sweaty and cold to the touch. I literally take a shami with me to dry up all the sweat that streams down my face, neck & shoulders. And not A DROP of urine leaks out.

I want my old leakage back...I could fill my leg bag up to 500cc and not sweat a bit!

Anyone can relate? Anyone know why? A solution?

Urologist just say "have surgery"...but WHY is this happening?

thanks for reading!

[brython2]

My bladder stopped leaking after 13 years of high pressure voiding with condom catheters, then I got the sweats and back pains.

Sounds like your bladder has decompensated and gone "thick walled".

Some options are Suprapubic, Clamshell Cyctostomy, Stent or Sphincterotomy. that's what my Urologist told me, I'm yet to decide what to do, I have to cath 7-8 times a day now.

Why not arrange for ultrasound to see if it is thick walled, and Urodynamics for a pressure test?

All the best!

[edlee]

I hadn't heard of that,, and must admit to being a little jealous. It constantly amazes me,, the wide variety of problems this SCI life presents us with,, and how the problems can change fro day to day.

Does cathing more often present a problem,, ie.. do you do it yourself or use an aide?

It does seem like a big pain in the ass, after so many years of having it under control. I'm not sure I would decide on surgery if more frquent caths could solve the problem,,, but everybody has to row their own boat.

ed

[hhache]

brython2, on May 21 2009, 01:54 PM, said:

My bladder stopped leaking after 13 years of high pressure voiding with condom catheters, then I got the sweats and back pains.

Sounds like your bladder has decompensated and gone "thick walled".

Some options are Suprapubic, Clamshell Cyctostomy, Stent or Sphincterotomy. that's what my Urologist told me, I'm yet to decide what to do, I have to cath 7-8 times a day now.

Why not arrange for ultrasound to see if it is thick walled, and Urodynamics for a pressure test?

All the best!

What does "thick walled" mean.

I had a Urodynamics done....what should I ask my Urologist?

I remember he told me as soon as I had as little as 300 cc that my bladder went all crazy.

Thanks.

[brython2]

"Thick walled".

I'm no expert, but if your bladder voids at high pressures like it will do just with conveen/condom drainage then it can* get overworked and strained.
I think the bladder wall muscle just gets thick from overworking.
In this state it's not as flexible as a "healthy" bladder and gets sluggish, making it unstable and high pressured. This can lead to urine working it's way back up the ureters (reflux) and can damage the Kidneys in the long run.

Q. ask your Urologist what your pressures were and If he/she thinks they are at a safe level, they should know what to do or not to do from your results, there are quite a few different methods of managing the bladder, it usually comes down to what suits the induvidual best.

I thought I was fine for years, the Ultrasound never picked up the "thick wall" in all the annual tets I had (I wish they'd have noticed/mentioned it sooner, I just used to ask "everything looking ok?" and I was usually told "yes".),
But each year my residual got higher, it was 800mls on my last scan. I was having back pains and sweats lots of UTI's and I thought I'd better think about starting to cath daily. (Tried cathing when I was in rehab, I just couldnt manage it properly back then, fingers were still dodgy and my heart wasn't in it and I used to leak inbetween etc.)

I had a Urodynamics test last Nov. 0-40 is the "safe result" pressure wise, my figures were in the 100's (your bladder looks like a 90yr old's the Urologist said ) so I have to choose one of those options to reduce the pressure.

I have just chickened out and taken myself off the list for a bladder aug. due this summer.
My last ultrasound I was told my Kidneys look healthy, so I could risk it and do nothing, but last few days after a good run of being pain free I'm getting flank pain again.

Anyway I'm down for another Urodynamics test just to make sure, and if pressures are still high then I'm going to go for the Aug.
I've had enough of the 24/7 wetness and conveen slippages after all these years, and enjoy being dry by cathing. No idea if I'm doing the right thing though!

Edited by brython2, 23 May 2009 - 02:00 PM.

[hhache]

brython2, on May 23 2009, 02:54 PM, said:

"Thick walled".

I'm no expert, but if your bladder voids at high pressures like it will do just with conveen/condom drainage then it can* get overworked and strained.
I think the bladder wall muscle just gets thick from overworking.
In this state it's not as flexible as a "healthy" bladder and gets sluggish, making it unstable and high pressured. This can lead to urine working it's way back up the ureters (reflux) and can damage the Kidneys in the long run.

Q. ask your Urologist what your pressures were and If he/she thinks they are at a safe level, they should know what to do or not to do from your results, there are quite a few different methods of managing the bladder, it usually comes down to what suits the induvidual best.

I thought I was fine for years, the Ultrasound never picked up the "thick wall" in all the annual tets I had (I wish they'd have noticed/mentioned it sooner, I just used to ask "everything looking ok?" and I was usually told "yes".),
But each year my residual got higher, it was 800mls on my last scan. I was having back pains and sweats lots of UTI's and I thought I'd better think about starting to cath daily. (Tried cathing when I was in rehab, I just couldnt manage it properly back then, fingers were still dodgy and my heart wasn't in it and I used to leak inbetween etc.)

I had a Urodynamics test last Nov. 0-40 is the "safe result" pressure wise, my figures were in the 100's (your bladder looks like a 90yr old's the Urologist said ) so I have to choose one of those options to reduce the pressure.

I have just chickened out and taken myself off the list for a bladder aug. due this summer.
My last ultrasound I was told my Kidneys look healthy, so I could risk it and do nothing, but last few days after a good run of being pain free I'm getting flank pain again.

Anyway I'm down for another Urodynamics test just to make sure, and if pressures are still high then I'm going to go for the Aug.
I've had enough of the 24/7 wetness and conveen slippages after all these years, and enjoy being dry by cathing. No idea if I'm doing the right thing though!

What if I WANT to leak. Any meds that can allow me to go back to leaking 400+cc with very little AD?

Thanks!

[juicee]

i use to leak alot too because i didn't cath regularly, but the last few years i've been cathing every 3-4 hrs to stay dry. Now i hardly ever leak even when my bladder is really full. It's a disadvantage in a way, when i go drinking and there's no accessible toilets, i could still stay out longer as i empty into a diaper but now i have to find a toilet to cath.