23 replies to this topic

[meeklo]

so im about a year into recovery and i use an intermittent catheter when i need to empty my bladder....this method is garbage in my situation.Anytime i lay down im in the red zone and end up going to the bathroom without cathing.My doctor said i should monitor my fluids and cath myself every two to four hours........try not drinking for 5 hours before bed,and cathing and having the problem occur not even an hour later.When i wake up and get in my chair i am sure to have gone again with in two hours of my morning cath.My uruologist is a dumbass and has tried me on like 5 different pills.....Needless to say i dont think one pill is going to miraculously close off my faucet and be the end of the problem.My friend is a C level and has a supra pubic catheter and swears its the best thing.....I am a t-level para and i dont kno how many people with my type of injury have an spc but i am really leaning towards this.......Anytime a special event comes up and im needed for a few hours straight i end up wetting myself without fail so basically i am at my wits end with cathing myself and would appreciate feedback

Edited by meeklo, 01 September 2007 - 06:18 PM.

[Nichole]

I really have not information about spc's. I've always used intermittent catheters since my injury, which is about three years now. I was having some problems with going to often, and having accidents at night at first. My doctor said what I was having was bladder spasms and they prescribed me Detrol. It worked really great for me, and I took the smallest dose. I had to switch a year later though because i lost my insurance, and the detrol is about $100 a month!
I now take the generic version of ditropan, works awesome. I never have to limit my fluids, and I can go 8 hours at night without going. I'm not sure if you've tried these two pills, but i thought i'd let you know they work for me. They do have different strengths as well, so maybe they need to increase your dose. Anyway i hope you find something that works for you, i know how frustrating that is.

[Somebody]

Welcome to the board.

I'm a quad c7 with a spc.
Works for me, but if I was a para I myself would in & out cath.

I'm sure para's could help you more.

Pray you get your problems worked out.
God Bless

[meeklo]

tried both,am on the ditropan generic and it is crap...i wake up and cath,and am wet within three hours....cath frequently to eliminate that and i still wet myself even within an hour....i dont drink near what i should daily so fluid intake isnt the problem and even when i was right on with intake it was still uncontrollable.I am seriously at the end of my rope and i dont know what to do....anytime something important happens for me i have an accident,i have to wear briefs nonstop and it is discouraging to say the least,there have been times i will go to sleep and forget to cath and twelve hours later i get up and cath and i will piss out like 800 ml.without a drop spilled overnite(that has happened maybe three times)but the majority i wake up in a puddle and when i cath ill let out maybe 200 ml. or ill start to notice leaking a few drops and i empty my bladder to find only 100 ml So volume isnt the issue because i can hold alot of fluid.Detrol Vesicare and enablex all were garbage.So what i am asking is what are the downsides of a spc?Despite the obvious of having a bladder strapped to your leg which i honestly dont care about...having a bag with my urine in it is better than having my clothes and cushion soaked looking for a place to wash them all.My doctor is going to send me to a neurologist....i dont think that will help either,i told him i need to be referred to a urologist any help besides pills would be appreciated,the mitranoff sounds interesting but is about the same as in and out cathing

[meeklo]

And dosage isnt the problem either....i take three damn pills a day with no results
Took the highest dosages on these pills....like i said dont think a pills going to dry up the dam

[Nichole]

Oh, well i'm sorry, just thought i'd let you know they worked for me. I really hope you find help, I know it's really upsetting when it disrupts your life like that.

[edlee]

There are any number of options to try before having your plumbing rerouted.

I'm sure you are aware of foley catheters, there are also condom catheters. Some of those can be disconected from the tubing to allow you to self cath without taking them off. I have one that has a small (300cc) bag attached and is reusable. I use it at night after having a few beers ( just in case) or if I don't know where I'll be for several hours.

There are many syles and brands of all the above and most online supply outlets and most manufacturers will send you free samples to try before ordering.

I hope you will try a few other things before you resort to "convenience" surgery. There are reasons your doctors aren't suggesting it ,,,,beyond their being the idiots you believe.

Use the search feature, here onsite, to get a lot of info on both the procedures you have mentioned.

Hope I've helped
ed

[Joes_Nat]

meeklo, on Sep 2 2007, 01:09 PM, said:

tried both,am on the ditropan generic and it is crap...i wake up and cath,and am wet within three hours....cath frequently to eliminate that and i still wet myself even within an hour....i dont drink near what i should daily so fluid intake isnt the problem and even when i was right on with intake it was still uncontrollable.I am seriously at the end of my rope and i dont know what to do....anytime something important happens for me i have an accident,i have to wear briefs nonstop and it is discouraging to say the least,there have been times i will go to sleep and forget to cath and twelve hours later i get up and cath and i will piss out like 800 ml.without a drop spilled overnite(that has happened maybe three times)but the majority i wake up in a puddle and when i cath ill let out maybe 200 ml. or ill start to notice leaking a few drops and i empty my bladder to find only 100 ml So volume isnt the issue because i can hold alot of fluid.Detrol Vesicare and enablex all were garbage.So what i am asking is what are the downsides of a spc?Despite the obvious of having a bladder strapped to your leg which i honestly dont care about...having a bag with my urine in it is better than having my clothes and cushion soaked looking for a place to wash them all.My doctor is going to send me to a neurologist....i dont think that will help either,i told him i need to be referred to a urologist any help besides pills would be appreciated,the mitranoff sounds interesting but is about the same as in and out cathing

Hey there,
My guy's a quad but has a good amount of hand function and has found a way to cath on his own. But he's had the same issues staying 'wet'. We've been using a condom cath at night. That way, the night bag hangs off his side of the bed and no waking up in puddles. We have had the best results with 'wide band' condom caths and Mentor prep pads. They stay on for a good amount of time and he can cath with it on (once he disconnects the line). He's even designed a few discreet recepticals that attach to his chair - so when we go out, he doesn't have to be bothered with it at all.

I guess my point is the same as our other friend's - don't rush into a body altering operation until you've really exhausted all your options. And believe me - We understand your frustration. We've been through MANY Dr.s and perscription 'cocktails' with varied results. Hang in there!

[hockeydahc]

yeah. condom caths. I went through something similar as I was actually in a transition from cathing to not needing to. I was given a condom cath and presto! no more puddles. Very helpful and relieving when theres something important you just can't risk.
maybe you're irritating the urethra as you cath, and/or (there was mention of reduction in drinking) perhaps you're not drinking enough. sounds silly, huh. I was informed by my wonderful doctor that when theres a disturbance in the urinary tract, the body responds by trying to flush it out naturally, and therefore you're peeing more often. the solution for a UTI... drink plenty and plenty of water! the sphincter muscle may be so constricted that cathing is required, but when the bladder knows it's not in balance, it may override that.

Edited by hockeydahc, 04 September 2007 - 06:15 AM.

[meeklo]

thanks for the input but i dont really like the condom cath...they tried it in rehab a couple times and it irritates my skin more than anything,I dont want to have a tube coming out of me all the time by any means.But i am sick of having to worry about springing leaks,and i know i am not the only person who deals with this issue but it is absolutely ridiculous on how often i have problems.I would drink according to a fluid chart still have a problem and doctors would say cut back,then i cut back and its not enough so here try some pills and you might get lucky.For a month or two i didnt have one issue at all then my ankles got swollen and i was given a diuretic for three days and 6 months later im still sitting here bitching.My buddy has the SPC due to his dexterity but he says he wouldnt want to have to deal with what i deal with even if his hands functioned normally.Like i said i dont like the idea of a bag and a tube attached but i am places sometimes that make it almost impossible to cath myself and be clean

Edited by meeklo, 05 September 2007 - 08:49 PM.

[hockeydahc]

what are you drinking? the best thing for you is water.

[meeklo]

i drink water and cranberry juice,thats it.......i never drink caffeine or alcohol because i cant even keep a glass of water in.And as for the possibility that i might not be drinking enough fluids ill put it like this,when i was in the hospital (spent damn near 5 months in so they had time to work with me)i would have this problem and they tried saying i have a uti so they would test me and no uti would be present.Then we would monitor fluids and i still would have problems,Then it came to him giving me a very long and educated explanation which was telling me he had no idea what the hell was wrong without saying that.My urologist has done the same to me for a year since,asks the same damn questions everytime with the same responses from me,all i keep getting are pills or just some speech on how i should cath every 2 hours....LOL yeah right!I know they spent time becoming what they are so i know they arent idiots maybe they just overlook things that make them put out extra effort is all. Another comment i saw on someones post was that im looking for a "convenience surgery" lol if i were looking for a convenient way to handle things i have a pistol on my night stand that would easily solve all of them but im actually trying to work this out so until you understand my position dont try to say im looking for a convenient way out.So basically piss myself every two to three hours and learn to deal with it or get a condom cath to help stop it with the possibility of them coming off.....great

Edited by meeklo, 06 September 2007 - 08:01 PM.

[greg]

meeklo, on Sep 6 2007, 03:53 PM, said:

i drink water and cranberry juice,thats it.......i never drink caffeine or alcohol because i cant even keep a glass of water in.And as for the possibility that i might not be drinking enough fluids ill put it like this,when i was in the hospital (spent damn near 5 months in so they had time to work with me)i would have this problem and they tried saying i have a uti so they would test me and no uti would be present.Then we would monitor fluids and i still would have problems,Then it came to him giving me a very long and educated explanation which was telling me he had no idea what the hell was wrong without saying that.My urologist has done the same to me for a year since,asks the same damn questions everytime with the same responses from me,all i keep getting are pills or just some speech on how i should cath every 2 hours....LOL yeah right!I know they spent time becoming what they are so i know they arent idiots maybe they just overlook things that make them put out extra effort is all. Another comment i saw on someones post was that im looking for a "convenience surgery" lol if i were looking for a convenient way to handle things i have a pistol on my night stand that would easily solve all of them but im actually trying to work this out so until you understand my position dont try to say im looking for a convenient way out.So basically piss myself every two to three hours and learn to deal with it or get a condom cath to help stop it with the possibility of them coming off.....great

Have you tried any of the clamps? I use the cunningham clamp. I have used it for over 20 years. You just need to watch that it is not to tight, as to cause sores or swelling. I do not use pills. I have leaks when the bladder overfills. I use one at night, but not as tight, so I do have some leakage,but use a towel to absorb it, because my problem is I have the most urine at night, even though I drink little after 6:00 PM. I have no feeling, so I do not have discomfort with the clamp. There are many different kinds.

[meeklo]

when i leak it isnt like a dribbble here and then......i is pushed out rather aggresively like im going to the bathroom so i dont think clamping that down would be such a good idea

[edlee]

Well, it looks like you've gone through all the suggestions we have, so all you need now is a surgeon.

I think it might serve you well to also seek some counseling for depression. Anyone who brings up "ending it" or " fixing it with the pistol they keep by the bed" has problems more troubling than wet trousers.

I hope you haven't become angry with me for that, though I think you probably have. Someone needed to bring it up and it might as well be me.

We have, all of us in our "situation", thought of suicide as a simple solution. Some have gone further than that. The rest of us decided to get on with life , as it is.

Remembering is good, looking back leads to tripping.

Sorry if I pissed you off, but so what?
ed

[zeta]

I may not help by saying this but my doctor put me on a small dose of amitriptyline for almost the same problem. One of the side effects of this med is difficulty urinating. The only problem I have is if I wait even a little to long bad ad makes me feel like crap. This has only happened twice in almost 6 mo. For me it's a small price to pay for not always worrying about accidents.

[alyssa]

Even though you came here asking for feedback, and then shot down everyone you gave some...i'm going to offer some as well..
Have you gone for or considered going for urodynamic testing?

Edited by alyssa, 18 September 2007 - 03:45 AM.

[meeklo]

ok let me explain it like this.....i didnt shoot down anyone who gave me ideas.....i have tried everything suggested but the clamp and im not to fond of capping of my hose like that.i apologize if my frustration seems like im being rude with people or arrogant but pills havent worked for a year and the ones people here recommended havent worked for me.Putting a condom catheter on is just letting my spasticity go on without any help,and im not sure if you have read into it or not but if your urine shoots downward it can shoot upward into your kidneys and damage them permanently so that is why getting this under control is an issue for me not to mention the fact i cant go two hours without having a problem.And i am at the mercy of my doctors who havent recommended any tests be it urine sample or any other types.I have poor insurance but thankfully have that,so therefore my doctors do the bare minimum for help.I have even asked if cash would change attitudes and most specialty doctors dont take cash.I am waiting to see a urologist that luckily does accept it so we will see what that person says,i see other people i know paralyzed who dont spend near the amount of time i do in the bathroom with issues and i dont understand.And honestly no one really gave any advice to my question,it was either try a pill,put a clamp on or spcs are not the way to go........well i would sure like to know why then despite the obvious.Because my question was what is good and bad with them,i appreciate the help people offer but at the same time i dont like people making it sound like im looking for an easy alternative or something like that because like i said in a prior post (which someone took the completely opposite way it was meant to be taken) if i really wanted an easy alternative i have a few but i am trying and trying and i keep getting kicked in the face with no relief...this seems like it may be one of my few choices left and i dont want a tube coming out of me but i miss alot in my daily life due to this issue and im sick of it,i cant work in the mornings because i am a loose cannon until about 2 then my bladder chills out for a few hours which gives me a four hour window of availability until i need to cath again and if im lucky i am dry when i do so,otherwise i have to find a place to change....then i am cool for another four hours at that time i lay down and cant go an hour plus without having a problem..........Becoming a pretty annoying lifestyle so forgive me for wanting a better way of life......And i know im not the only person with this issue so im not throwing a pity party,i just really want some help

Edited by meeklo, 21 September 2007 - 09:42 PM.

[Paradigm]

Meeklo, I'm a T6 para with an SPC and I've not had any problems at all... I don't like having a tube coming out me either, but I don't have the balance to be able to self-cath (for a start it's harder for us girls, and can't imagine doing the required balancing act while battling spasms).

I had an indwelling (urethral) catheter for about the first 3 months I was in hospital (I had an 8 month stint in rehab!!). I was told that having an in-dwelling (urethral) catheter can eventually damage the sphincter of the bladder because it is permanently held open, and after a time it may not properly close, and leakage could become an issue. I wasn't ready to learn to self-cath so I opted for the SPC. If I want to learn to self cath later in life, that is still an option.

I think you should go ahead with it, because it sounds like you have had a TERRIBLE time, and I would suggest that in your case, the convenience and ease of having a leg-bag far out-weighs the downside of having tube coming out of your body'...

It simply comes down to quality of life... and it sounds to me like yours could be improved.


Either way, good luck!!

Edited by Riot Grrrl, 27 September 2007 - 02:51 PM.

[Paradigm]

I've just discovered that I can't donate blood while I have the SPC... I thought that was interesting... apparently because there is an increased chance of infection.

I really wanted to donate too, because I had and 8 hour surgery, and they operated on my shoulder and spine in one go. I've forgotten how many units of blood I required, but it was several. So anyway, I really wanted to give some back...

Now my aim is to get 30 or maybe even 50 people to donate on my behalf all in the one day, I'll make a big thing of it in the motorcycling community... I'm sure I could muster up quite a few.

Sorry, I kinda hijacked the thread a bit... Whoopsies!

Edited by Riot Grrrl, 28 September 2007 - 02:15 PM.

[4wheeljay]

Meeklo,
I think, I’ve been where you are, feeling hopeless not knowing where to turn, and tired of wetting all of yourself. I’ve had the family telling me how to fix the problem the problem it usually goes like this:
----Family member states You should go to the Dr. tell him about a pill out on TV that can fix your problem, because I saw commercial last night that should stop your problem, it works for your 70 year old aunt who has a problem making into the bathroom.===
What a joke, just because Aunt Sally, walks like a snail and he does not queue verse off enough time to go to the bathroom, does not mean that pill is going to work for everyone. My problem is not, being able to go to the bathroom in time, it’s that my bladder would empty its own.

Trust me I’ve tried the pills, with little\no positive response. The only response I had for most pills was dry mouth, dry skin, severe constipation, you name it I had it. Dr. and I even gave up hope on pills. Mind you the whole time I was intermittent cathing, and suffering from constant UTIs.

I also tried, condom caths, their great-popping off when you really don’t want them to, and not knowing it came off, and the bladder releases and you’re soaked. So my recent last resort was to try Intermittent cathing and wearing a diaper.

For a while this is the way I was, then I started using foley’s and constantly flash and my system (drink plenty of liquids). Finally, I moved and needed a new urologist immediately we discussed discussed a SPC. Let me tell you I’ve had it for over a year now, and I’ll never go back. , I’m t-12 incomplete, I highly recommend SPC. The SPC let’s me get back to life and not worry about wetting all of myself. Unfortunately, due to my injury I have severe muscle spasticity\spasms. So I occasionally have some leakage. But that is soon to be corrected, because I also had a Baclophen pump put in, to reduce spasms and spasticity.

So if you don’t mind wearing a bag all the time. I just hang a night bag off my chair-I have a bag goes in it to hide it or you can use a leg bag. My SPC does not stop me at all, I can still go swimming this was a big concern for me but Dr. gave me a plug so, I take the bag off, plug the cath and just go swimming. So not stopping me. And let me tell you, SPC offered me freedom, and stress reduction because I don’t worry about leaking.

I would suggest discussing this with your Dr. if you’re interested, as I said it works great for me, and I’m a T-level injury also

Best of luck
Jay

[buffie]

I also have a spc and I love it. I wanted one from the start as I am female and I did not want to have someone undress me every 4 hours to cathe. I't's been great, no problems for me whatsoever.

[Doug]

Im in the same boat with you....plenty of leaks and no pill has even come close to stopping it.
The fact that Im a quad weighs even more on my choise of getting a spc..,,quick question to anyone who has one....what kind of cath does it use? special....or...foley?

[mcjane]

When I was in rehab I was told 'Your bowel is like a dog, you can train it. But your bladder is like a cat, you cannot control it.' Truer words never spoken. Medicare provides 6 catheters per day. Ha! They will not provide me with Depends or Poise pads which I have found to be a saving grace. I wear both. The Poise Ultimate pads are incredibly absorbent, almost miraculous, and they wick moisture away from your skin. At night you can slip one out and insert another without hardly having to wake up. I always cath in bed, its easier. I have no plan or intention...but I have thought that if I ever killed myself it would be after wetting the bed. It is soooooo frustrating!!! Somehow just as bad as wetting your chair in public. SO I would advise you to move the gun from your bedside...lol

I was given a Foley cath and would like to learn to use it when I go out for a night of drinking or a long drive. It would be a relief to just have to empty the bag. I have no experience with the SPC, but a friend of mine got an infection from hers. I wonder if the lubrication gel isn't a cause of a lot of UTI's. It contains parabens which are suspected of being carcinogens. Frankly, I don't need the gel. I have to dry myself BEFORE I pee these days. Weird, huh?