[Dancing Jackass]

Howdy all, as this is my first post here I'll tell you a little about me.

I'm a parapalegic but I don't recall what the vertebrae effected are. I have been in a manual wheelchair for almost five years now.

I was born with Neuroblastoma (cancer of the spine) and underwent what was, by any standard, very harsh treatment for an infant. I was going to die of it so the doctors in the teaching hospital where my father was a med student threw everything they had at it. chemo-, radiation, surgeries. And they licked it, thankfully. Sure there were some complications here and there but from the age of about 7 until I was 26 or so, I lead a mostly able-bodied life... my lung capacity is somewhat reduced so I wasn't as athletic as I would've liked but I did enjoy biking, swimming and the outdoors.

In my late twenties though I started to get spasms in my right leg, and twinges of numbness and then excruciating pain. As I was a young guy I just assumed I'd injured my leg/foot during a big night of drinking and that I'd be fine with time. Well it got worse and began to appear in my left leg. I finally got a huge battery of tests and it was determined that the section of my spine that had been irradiated and fused and what-have-you was aging poorly and was no longer a good conduit for the the neural signals.

So now we get to my question and the reason I'm posting in the bladder and bowel forum.

I don't catheter, I pee normally, though sitting. Sometimes it takes me a while to get my bladder to relax and empty and my urologist says I rarely completely empty my bladder. I try to keep my hands clean but pushing a manual wheelchair is a dirty business and sometimes you're in public places where you can't be as tidy as you want and I've had a few UTIs here and there, all handled with antibiotics to good effect.

Well, in the last couple of years it seems that I have to pee constantly, especially at night. Sometimes I get up twice an hour, all night long, and pee like a bandit. It's making me exhausted and a few times I've been so tired I didn't make it up to go and had an accident. My girlfriend was understanding but I was really really embarassed.

During the day it's less troublesome although I do pee more than most people and that's even with probably not drinking enough water. And sometimes the urge to pee comes on so quickly, from out of nowhere, that I'm terrified I won't find a place that's accessible in time.

I have a urologist and we've talked about this and that but I can't seem to make him understand my trouble. He did give me some Levsin, little white pills to take as needed to dissolve under my tongue that he said would "relax my bladder" but I really don't know when "as needed" is and can't seem to notice any difference with the Levsin.

From what I've seen most of you use catheterization of one sort or another, but I bet you guys and gals can give me some good advice on how to talk to my doc about this, what to suggest, what to try.

Until I've exhausted any possible medical/pharmaceutical options, I don't really want to get into incontinance products just yet, but I know that my future may hold that.

Sorry for the long post!

[Jsec64]

Hi Fella
Well I am in a similar boat as you and have been reluctant to use various products but have found that I now have no choice as its affecting what I do, where I go etc. on a daily basis. Products are'nt too bad given that I can enjoy family outings etc and not be reliant so much on adequate toilet facility close by.
I'm told that a recent scan showed that I am retaining water and will have to catherterise but dont let your problems control your day like it did mine.

Best of Luck
John

[Kev-O]

Hey man you dont happen to go to old miss do ya???? i lived in MS for 7 years B4 i moved and i have a friend that goes to Old Miss

[Texaswheelz]

have he looked for stones? how about prostate? I think both of those can cause the feeling of always needing to go, but hey it's your choice, if you don't feel your Urologist is listening to you or doing his job well enough, go to a different urologist.

This post has been edited by Texaswheelz: 12 October 2007 - 04:03 AM

[KimAndSophie]

Dancing Jackass, on Oct 11 2007, 11:14 AM, said:

Howdy all, as this is my first post here I'll tell you a little about me.

I'm a parapalegic but I don't recall what the vertebrae effected are. I have been in a manual wheelchair for almost five years now.

I was born with Neuroblastoma (cancer of the spine) and underwent what was, by any standard, very harsh treatment for an infant. I was going to die of it so the doctors in the teaching hospital where my father was a med student threw everything they had at it. chemo-, radiation, surgeries. And they licked it, thankfully. Sure there were some complications here and there but from the age of about 7 until I was 26 or so, I lead a mostly able-bodied life... my lung capacity is somewhat reduced so I wasn't as athletic as I would've liked but I did enjoy biking, swimming and the outdoors.

In my late twenties though I started to get spasms in my right leg, and twinges of numbness and then excruciating pain. As I was a young guy I just assumed I'd injured my leg/foot during a big night of drinking and that I'd be fine with time. Well it got worse and began to appear in my left leg. I finally got a huge battery of tests and it was determined that the section of my spine that had been irradiated and fused and what-have-you was aging poorly and was no longer a good conduit for the the neural signals.

So now we get to my question and the reason I'm posting in the bladder and bowel forum.

I don't catheter, I pee normally, though sitting. Sometimes it takes me a while to get my bladder to relax and empty and my urologist says I rarely completely empty my bladder. I try to keep my hands clean but pushing a manual wheelchair is a dirty business and sometimes you're in public places where you can't be as tidy as you want and I've had a few UTIs here and there, all handled with antibiotics to good effect.

Well, in the last couple of years it seems that I have to pee constantly, especially at night. Sometimes I get up twice an hour, all night long, and pee like a bandit. It's making me exhausted and a few times I've been so tired I didn't make it up to go and had an accident. My girlfriend was understanding but I was really really embarassed.

During the day it's less troublesome although I do pee more than most people and that's even with probably not drinking enough water. And sometimes the urge to pee comes on so quickly, from out of nowhere, that I'm terrified I won't find a place that's accessible in time.

I have a urologist and we've talked about this and that but I can't seem to make him understand my trouble. He did give me some Levsin, little white pills to take as needed to dissolve under my tongue that he said would "relax my bladder" but I really don't know when "as needed" is and can't seem to notice any difference with the Levsin.

From what I've seen most of you use catheterization of one sort or another, but I bet you guys and gals can give me some good advice on how to talk to my doc about this, what to suggest, what to try.

Until I've exhausted any possible medical/pharmaceutical options, I don't really want to get into incontinance products just yet, but I know that my future may hold that.

Sorry for the long post!

You should try to talk to your urologist again, and if they still don't understand try finding one that will listen. I know you said you don't want to get into "incontinance products" yet, but if you maybe tried a condom catheter and leg bag at night and if you are going out for a long time you would be a lot less stressed. You could take it off whenever you wanted, and not worry about not making it, or finding accessible washrooms. Just a thought.

[Zammo]

I agree with K&S, try a sheath catheter with a small leg bag perhaps to alleviate the risk of 'not making it in time'. It might take away the stress during the day.

[hockeydahc]

sometimes the legbag option at night is defeatest for me. I know it's on, but if I have the urge to pee, I can't just lie there and go, I have to get up...

Catheterization isn't as bad as it seems, DJ. during my recovery transition, I was told to go on my own, and then cath to finish emptying. standing orders that I could stop cathing when i was getting less than 100ml. may be all you need to do, and it could lead to more comfort.

one thought comes to mind... there may be a small disturbance with the bladder, not really full UTI. the body tries to naturally flush out the bad stuff, and therefore you pee all the damn time. I've been there. I've been told drink water. sounds weird when you're already peeing all the time, but it may help, and/or some real cranberry juice...it's sour... don't get cocktail.

I agree with above posts. if your Urologist isn't getting it, change docs. is your present Uro knowledgeable of your spinal cord condition?