17 replies to this topic

[sciiaf]

I was injured in June 2009. A few months later in September I was suffering from constant bladder accidents, anywhere from 2-5 times a day. Doc at first thought it was another UTI and put me on medication. It kept coming back. So, from September through November I was constantly wet. The UTI had colonized itself, basically, it’s here to stay and nothing will make it leave.

I finally got in to see a urologist who suggested it wasn’t UTI’s but bladder spasms and I tried a couple different medications to ease that. Didn’t really work so as last resort she gave me botox injections into my bladder, about 20. The botox is supposed to tighten up the bladder and prevent spasms. I am supposed to get the injections every 6 months.

That helped, but still on occasion I would get accidents so THEN she put me on a daily bladder control med. Some days I am accident free but sometimes I’m not. I’ve started tracking what I do and eat to see if there’s a pattern. I elevate my legs at night to ease the swelling, sometimes up to 5 hours. That’s left me wet (I figure the water being released from the legs is causing an overflow). I think if I drink alcohol at night then the next day I have accidents. I’ve also noticed that if I eat foods too high in sodium (canned soups) I’ll have an accident.
What I’m wondering is does this sound familiar to anyone? I know bladder and bowel accidents are not 100% unavoidable for all of us but this has just been relentless. And YES, I cath like I’m on military time. Every four hours even throughout the night. And no, I don’t load up on liquids. I don’t drink a lot of coffee, soda drinks.

Can anyone offer insight? Have you had problems like this, what has helped you?

[Ratticis]

Have to taken into account what you're DOING when the accidents occur? I notice that sometimes even moving a certain way can cause the floodgates to open. I'll cath before I get up while laying down, then transfer into my chair and have to transfer right back to change my pants. Just a thought

[chris135]

Hey it sounds like were in the same boat. I was injured may of last year. I had my problems with utis while i was in rehab and when i got home in october it seemed like they were less frequent. but at the end of december i had another one. So i went to the doc and he game me some pills and a test. didnt work so went back to my regular doc. got new pills and took another test. also didnt work. So i went back again, and i was given antibiotics once again. Well these didnt work either and i got really fed up, by this time it was around early february i think. So i go back and she tells me that its not a uti, that it has cleared up since my previous urine samples. So she doubles my detrol intake from 4mg to 8mg. This doesnt work either.She thinks its neurological and i say bullsh!t(excuse my language). So she asks another doc and he suggests as you were told bladder spasms. and to me that makes sense cause sometime i can kinda tell that it is spasming. Anyways she ups my gabapentin from 600 to 900 daily, no big deal. She gave me some baclofen too but i never took it. This hasnt worked and im still waiting to see a uroligist myself on the 15th. i've heard there are a few other meds that might work and i heard about the botox as well but was told it would be every 2-3 months. I'll try anything as i've been wearing a condom cath the hole time. I do admit i still drink coffee, pop and beer but i didnt have problems with it before and im not going to give it up now. I'm sorry i dont have any insight for you at this time but if they find a solution for me i'll most definately let you know as i know how frustrating this can be. feel free to message me if you have any questions.
Chris
p.s. i appologize for the poor gramar

**edit- i'm a T8 complete in case you were wondering so i see we have very similiar injuries

Edited by chris135, 04 March 2010 - 02:35 PM.

[mellowgator]

chris135, on Mar 4 2010, 03:34 PM, said:

Hey it sounds like were in the same boat. I was injured may of last year. I had my problems with utis while i was in rehab and when i got home in october it seemed like they were less frequent. but at the end of december i had another one. So i went to the doc and he game me some pills and a test. didnt work so went back to my regular doc. got new pills and took another test. also didnt work. So i went back again, and i was given antibiotics once again. Well these didnt work either and i got really fed up, by this time it was around early february i think. So i go back and she tells me that its not a uti, that it has cleared up since my previous urine samples. So she doubles my detrol intake from 4mg to 8mg. This doesnt work either.She thinks its neurological and i say bullsh!t(excuse my language). So she asks another doc and he suggests as you were told bladder spasms. and to me that makes sense cause sometime i can kinda tell that it is spasming. Anyways she ups my gabapentin from 600 to 900 daily, no big deal. She gave me some baclofen too but i never took it. This hasnt worked and im still waiting to see a uroligist myself on the 15th. i've heard there are a few other meds that might work and i heard about the botox as well but was told it would be every 2-3 months. I'll try anything as i've been wearing a condom cath the hole time. I do admit i still drink coffee, pop and beer but i didnt have problems with it before and im not going to give it up now. I'm sorry i dont have any insight for you at this time but if they find a solution for me i'll most definately let you know as i know how frustrating this can be. feel free to message me if you have any questions.
Chris
p.s. i appologize for the poor gramar

**edit- i'm a T8 complete in case you were wondering so i see we have very similiar injuries


coffee and beer make me pee myself. those are the only culprits. so if i dont drink them i'm able to stay dry inbetween caths. just my experience.

mellowgator

coffee and beer always make me pee myself in between caths so i don't drink those. i switched to hard liquor instead of beer and coke instead of coffee. i also use a patch called oxytrol. which also keeps me from accidents.

just my experience

mellowgator

[mcferguson]

I have learned that my bladder takes about two months to recover from a UTI. I got one early November 2009 and I would go whenever my bladder got 200mL in it. I was cathing every hour in the morning and would still leak. Gradually my bladder increased its capacity and now I can hold 1000mL (I didn't hold that much on purpose, just slept in an extra hour one morning recently and got that much out). I am on 15mg of slow-release oxybutinin for bladder spasms. When my current prescription runs out, I want to go down to 10mg and then 5mg and hopefully get off of them.

My current liquids routine is drink 16oz bottle of water when I get up, drink a second one by 11am (this keeps my bladder flushed to reduce chances of UTIs and was something I started doing after my UTI in November), a third by about 3, and then sip on non-caffeinated drinks the rest of the day. I cath at 3am, 6:30am, 8:30am, 11:00am, 1:30pm, 4:30pm, and 9:30pm.

I take 600mg of cranberry supplement and 1000mg of vitamin C supplement to reduce the chances of UTIs (maybe its overkill, but its working now). I know how frustrating bladder problems are, and I hope you get yours figured out soon.

[gordonr]

I have trouble relating to this on a numer of levels.

To begin with, when I was in rehab (30 years ago) intermittent catheterization was not seen (at least for men) as a longterm solution. Why? Well because you always end up pissing yourself...

Actutally it is a little more subtle than that.

When you are first injured, the spincter tends to spasm shut, and you will not pee, no matter what, without a catheter, and you have to be careful not to injure yourself with enormous volumes. At this point, intermitent cath makes a lot of sense, because the utis are less frequent (if you do it right) than with an indweller.

After a variable time (in my case ten months post injury, which was the longest my uro nurse had seen) you start to leak. At that point, the choice would be between condom catheter and indwelling, and once again, the condom was considered superior, due to lesser utis.

However, beneath all of this, is a more fundamental dynamic, which is: how much you drink versus what volume you have before you pee, and how completely are you able to void. The point being, that you have to drink A LOT. And if you are minimizing your input in order to minimize "accidents", then you are on a slippery slope to uti and renal failure. Next, if your volume is too large before your shincter lets go, then you are looking at reflux urine polluting your kidney, and you are also on a slippery slope to uti and renal failure. Finally, if your bladder is not voiding completely (within fifty cc's or so), then the bugs in your urine will have plenty of time to multiply and you will be (this should be becoming familiar by now..) on a slippery slope to uti and renal failure.

And the all over worst case, is where you do not void completely, so the bugs have lots of time to multipy, but you are also minimizing your input so you won't have to pee too often, and that gives the bugs an even longer better chance, and finally, from time to time, you get a really big volume (because your spastic shincter is not letting go) which may happen after a beer or two, and then you have the perfect storm: You force super-concentrated, super-ucky urine back up into your kidney, and you are no longer on the slope, you are face to face with damage to the kidney.

So let's phrase the whole thing differently...

You do not PRIMARILY want to avoid accidents. You want to have a good flow. IF you are pissing yourself, that is a GOOD thing, because the urine is not being backed up to the kidney (where it will kill you), it is just pissing out harmlessly into your pants. In this perspective, taking medication that will cause your bladder and sphincter to collaborate in supressing that leakage, is just crazy.

The next point is, do you need a catheter? Because, if you void fully enough, usually with some pushing and tapping on the bladder, then you do not need a catheter, you can use a condom (I don't know if females have some sort of equivalent). But if you don't void enough, you must use one catheterization a day, with a condom controlling the leaks for the rest of the time. And if you have a sphincter which is too spastic and causing too large volumes, then you need an indweller.

The OP has been injured less than a year. She has not yet been through the wringer with pylonephritis.

I repeat the main point. This is not about avoiding accidents. This is about passing enough volume each and every day to avoid destroying your kidneys.

I personally was operated on to IMPRIOVE The flow. INCREASE the leakage.

I would never do anything medical to PREVENT it.

That would be like welding shut the safety valve on a steam engine.

One day, the whole thing is going to blow.

Hope this helps,

Gordon

Editted to say: McFergusen, 1000 cc's is WAY to much. You are going to harm yourself if yo do that too often.

Edited by gordonr, 05 March 2010 - 02:39 AM.

[millserd]

hey. I'm t4 para bout 2 years post. I have had bladder accidents like what u described for a long time till I was prescribed a med called "toviaz." You should ask your doc about it. I honestly haven't had an accident since. my doc also said I was getting bladder spasms. this med worked for me n I would recommend it.

[In The Wind]

wear a condom cath and forget about it it.

[Denny]

I have similar experience, it all started 6 months after my injury. Most of the time bladder can contain only 350ml, and some times stores up to 600ml. It is so inconsistent that I wear sheath all the time and do self catheter through sheath. I had botox injection twice, but the effect did not last more that few days. So Dr prescribed Oxebutenine which helps a bit, but not enough to be off sheath. If I dont take Oxebutenine, when ever I pass urine I feel heart rate increase, start sweating etc.

I pass more often when I am driving, and feel AD symptoms if I drink less.

[mcferguson]

gordonr, on Mar 4 2010, 08:37 PM, said:

Editted to say: McFergusen, 1000 cc's is WAY to much. You are going to harm yourself if yo do that too often.

I know. I try to monitor my fluid intake and time my caths so that I get out about 400mls. I have had the 1000mls twice in past year.

[chris135]

Some very interesting view points on the subject. For me however i live a fairly active lifestyle and wearing a condom all the time is not an option. Yes it is doable but its not for me, i just generally feel better when everything was working right. Pissing myself in public is kind of a big deal for me so i'll try everything i can. I can see how taking meds to keep urine in and the sphincter closed can keep bugs in and what not but i guess thats a risk you take with the trade off between cathing and using a condom drainage. Myself personally would rather risk the utis and be as sterile as possible when i cath than be leaking all of the time.

[gordonr]

Guys,

This is an extremely important topic and well worth the time we spend on it.

One first observation is that most of the posters trying to control their leakage with meds or botox are relatively new to the game. I think that is significant. I am not a doctor, but I suspect that these therapies, designed to keep AB's dry between trips to the can, are not a good idea for sci. And my reason is that the whole idea is based on LIMITING flow, whereas, we, as a group should be doing anything we can to INCREASE flow (and hence our longterm survival).

I don't want to sound dramatic, but when your temperature goes up to a hundred and five and they are finding the bugs in your kidney and your blood, some of you might get a greater sense of the total equation flow/storage-volume/sphincter-retention/bladder-clean-out. It is a b*tch, because health requires a large volume of intake and flow, but the more you drink the more you have to deal with the troubles of voiding.

However, there is no shortcut. This is survival folks. Renal failure is the number one killer of people like us. So once again, measuring my words, and avoiding exaggeration: This is not about leaking in your panties. This is about living to see your fiftieth birthday.

So let's look again at the usual case.

Denny, on Mar 5 2010, 12:21 PM, said:

I have similar experience, it all started 6 months after my injury.

That is standard. It means that your sphincter has finally stopped trying to hold shut at all costs. This is good because now you will normally be able to avoid the huge dangerous volumes that can cause most trouble. When your bladder gets too full, the sphincter will let go and you will be protected.

Alternatively, you can tighten up the sphincter with butox, and medicate the bladder so it won't contract, and then, when you have a few beers and forget what you are doing, you can go to 1000 or 1500 cc's without any leakage, and that will hasten you down the slippery slope to upper tract uti and renal failure. Your choice.

Quote

when ever I pass urine I feel heart rate increase, start sweating etc.

It's not just when you pass the urine. It is before you pass it. It is your body's way of telling you that your bladder is uncomfortably full (that is why you feel uncomfortable...)


Think about this. Beyond being unable to move, the thing that is most dangerous for us is the lack of sensation, because we are unaware of the harm being done us before it is too late.

Now in this case, your body has found a way to tell you that your bladder is full and needs to be emptied. That is a great thing. It is the functional equivalent of restored sensation. And the correct response, I submit, is to empty your bladder when you feel that way. This puts you in control. Taking medication to mask the feelings, on the other hand, sends you back to square one.

Quote

Most of the time bladder can contain only 350ml, and some times stores up to 600ml. It is so inconsistent that I wear sheath all the time and do self catheter through sheath. I had botox injection twice, but the effect did not last more that few days. So Dr prescribed Oxebutenine which helps a bit, but not enough to be off sheath.

OK. You are getting used to being incontinent. The drugs and the botox are not stopping the incontinence. Now you have to get back in control. And wearing a sheath is the first step.

But the most important question now, is HOW MUCH can the incontinence HELP you ? I know this sounds odd, but cathing is also a pain in the butt, right? So now that your sphincer has let go, do you need to cath as often? Most people can reduce to once or twoice a day, knowing that their bladder will empty as required between times.

And as for your sensations of sweating and headache etc. due to a full bladder, you probably don't have to put up with those feelings. You just have to void better.. So can you void completely WITHOUT cathing?

Try a simple experiment: Next time your bladder is just overflowing, try beating and/or pushing on your lower abdomen (right down by the pelvic girdle where the bladder is) and see if you can stimulate more contractions and get out more urine. This takes practice, but it is key to the whole thing. Once you get competent in stimulating your bladder to void, you will be able to go to the bathroom like anybody else, when you need to, not on a schedule, and just voiding to the bag and then to the toilet without any need to cath.

In other words, the body is reacting positively to the sci, slowly, as the months go by, both by restoring a safety function, and giving you sensation feedback on what is going on down there, so you are no longer just trusting the clock and your cathing schedule, but actually FEELING when the volume is getting out of your bladder's comfort zone.

With some luck and effort, you can use these gifts, to get back in the drivers seat.



Best Regards,

Gordon

[Kodie]

Heya guys,

Gordon makes alot of sense. When I was in the hospital, they had me cathing every 6 hours, which is a pretty good rule of thumb...when you're newly injured. Now, 7 years into this roller coaster ride, I follow my body's signals. When I have to piss I get chill bumps that let me know I gotta go. So, when the chill bumps start, I cath. If I don't heed my body's warning that my bladder is full, I piss everywhere. Just my two cents. Hope you guys get everything sorted out.

\,,/ Kodie \,,/

[Lucky]

I'm not too bad when it comes to bladder matters.
I normally have to wait till my bladder is full then I can go. I can't just go when I feel like it as I could pre-injury. I go 3 - 4 times on a 'normal' day and wake once in the night usually. How-ever these days, when I need to go, I have about 5 mins to get to the bathroom. Sometimes I have to tap my bladder and cough to help me pee.
I've found that alcohol seriously disturbs my pattern and is a nightmare through the night. I can hold about 3 pints and then I have to go every 20 mins or so. Sometimes my bladder hurts as its so full.
When I stop taking my opiate meds or begin, that also makes me go frequently.
I can feel like I'm bursting and only pee 300mls or wake in the morning and do 750mls.
I've never suffered accidents how-ever bowels is another story.....

I guess what I'm saying is unless I drink the same and live each day the same as the next for a while, I have no real idea how my bladders going to behave.

Raspberry & Cranberry juice is marvllous for your bladder though. Try it.

[gordonr]

Kodie, on Mar 5 2010, 10:11 PM, said:

Now, 7 years into this roller coaster ride, I follow my body's signals. When I have to piss I get chill bumps that let me know I gotta go. So, when the chill bumps start, I cath. If I don't heed my body's warning that my bladder is full, I piss everywhere.
\,,/ Kodie \,,/

Kodie,

This is great. You are in control.

But I am wondering what you do for a backup? Do you wear a pad?

I wear a condom. But I am able (through stimulation) to get a good void. Not everybody can. Cath is the best for a complete void. But many times cath is not convenient.

There are simple sheaths out there that don't have to be glued on, only held by a pressure tape. I used to wear nothing at home during the day time, and then when I went out (or sleeping at night) I would put one of these things on.

That would work for you, I think. I would suggest a good void in the morning with the cath, and then put on a sheath and get the hell out of the house. Practice tapping on your bladder when it is full. The more you get out, the better you will feel.

Then try a reality check: Empty your bladder into the leg bag as completely as you can (tapping and pushing as you will learn to do) and then cath and look at the volume you get. THat is what they call the residual volume. When you get it to fifty cc's or less, you will be able to give up cathing almost entirely.

Seven years is not professional grade, but it is definitely Black Belt. Congrats on getting in tune with your body functions.

Best,

Gordon

[MrBump]

I have spc, but don't use a bag, just a flipflo.
I take ditripan for bladder flexibility.
When I wee, I usually empty 400ml, but my record is 800ml (not good tho)
I get the same shiver when I need to go.
I drink about 3l of water every day + glass of piineapple/orange juice to keep wee balanced and it flushes sediment.
I wet myself sometimes like 1/month maybe but like Gordon, I see it as a good thing.

[Kodie]

gordonr, on Mar 6 2010, 09:37 PM, said:

Kodie, on Mar 5 2010, 10:11 PM, said:

Now, 7 years into this roller coaster ride, I follow my body's signals. When I have to piss I get chill bumps that let me know I gotta go. So, when the chill bumps start, I cath. If I don't heed my body's warning that my bladder is full, I piss everywhere.
\,,/ Kodie \,,/

Kodie,

This is great. You are in control.

But I am wondering what you do for a backup? Do you wear a pad?

No I have a couple of wash rags in my pants to catch any leakage. I'm usually on top of things, so when I feel the chills, I get right to cathing. At night I tend to sleep on my side so I'll put a towel down to catch anything. When I go out I take my cathing stuff with me and leave it in the vehicle, that way, if I need to piss, I just go to the car. I used to wear condoms and a leg bag but they seemed like more trouble than they were worth.

\,,/ Kodie \,,/

[oljeffy]

Ah great topic. I am only seven months into this deal and still trying to find my way. I usually
try and cath 4-5 times daily. My urologist has never mentioned a sheath, so that may be something I can look into. Being an old guy, I just said to heck with it and wear diapers when I go out. Not the ideal solution but seems to work for me. Also at night I sleep in one. Never got the leg bag thing. Always sliding up or down.