Thread: A Thread to bitch and complain?

  1. #1651
    Senior Member keps's Avatar
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    sjean - I don't take any bladder meds. I can hold about 300 mls before I get ad, sometimes more (up to about 500 mls rarely).
    I've been cathing more lately. I wonder if it's due to the fact that I've regained my taste for salt in the last few weeks.
    But even before that, I couldn't get away with cathing much less than 9 or 10 times a day.

    I desperately don't want a permanent indwelling cath, but this is doing me in so bad.

  2. #1652
    Quote Originally Posted by keps View Post
    sjean - I don't take any bladder meds. I can hold about 300 mls before I get ad, sometimes more (up to about 500 mls rarely).
    I've been cathing more lately. I wonder if it's due to the fact that I've regained my taste for salt in the last few weeks.
    But even before that, I couldn't get away with cathing much less than 9 or 10 times a day.

    I desperately don't want a permanent indwelling cath, but this is doing me in so bad.
    Have you had a recent Urodynamic Evaluation? Might be well worth it and provide you with some good alternatives to an indwelling. Best of luck to you!!

  3. #1653
    Keps, I had never taken any bladder meds either and I have full control over my bladder and don't cath. But still my pressure in the bladder are too high and I have tried all the bladder meds and then I have to cath. I can keep 450 cc but normally I feel to go at 300cc.

    I have tried this because of all the UTI, the bad thing is I can't stand the bladder meds, I get headaches and so dry everywhere, even in the intestine, they want to try botox and then I have to cath again.

    But I think that if your pressure is too high, you maybe have to go too often. It is worth a try.
    TH 12, 43 years post

  4. #1654
    Quote Originally Posted by LindaT View Post
    Good grief Bente-I hope your day got better. Think of the sidewalk cafe...........
    I still has not got a new chair, they said one week, today they said it would take much longer.
    TH 12, 43 years post

  5. #1655
    Quote Originally Posted by woman from Europe View Post
    I still has not got a new chair, they said one week, today they said it would take much longer.
    Oh Bente, that stinks. Why is it going to take so much longer?

  6. #1656
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    Quote Originally Posted by woman from Europe View Post
    I still has not got a new chair, they said one week, today they said it would take much longer.
    For what it is worth Bente, no one gets a chair in a week in the US either. Here it is measured in months!

  7. #1657
    Quote Originally Posted by keps View Post
    My bitch for today - I gave up and put a foley in tonight. I've been cathing every 1 1/2 to 2 hours today, and I just couldn't cope. I'm exhausted and couldn't relax for wondering when my next bout of ad goosebumps were going to tell me it was time to cath yet again. I've got a headache from all the times I've had a full bladder today.
    The longer this goes on, the less I feel able to cope with sci-related self care. I feel like weeping having to do a bowel program (and have wept on the toilet before), but at least that's just once a day, then I can mostly forget about it. The bladder stuff never goes away, I'm feeling more and more like I can't handle cathing over 10 times a day. Getting bad sleep due to needing to pee 3 or more times a night. Restricting fluids just doesn't work for me.
    I'm just the opposite of you

    I'm a C-6 quad and have had an indwelling SP catheter for about 18 years now, and i've had way more issues than the normal person with an indwelling catheter.

    For about 15 years, none of the bladder meds worked well at controlling my chronic bladder spasms, so i constantly had to deal with varying degrees of dysreflexia and sometimes hospital visits. Countless nights of little to no sleep as my bladder spasmed, my dick burned, and i was sweating from AD.

    Finally Vesicare has helped somewhat with the bladder spasms, but for over a decade i've also dealt with my catheter choosing to stop draining on it's own for no reason that multiple urologists can figure out. This causes AD, causes me to sometimes piss on myself, and to need an irrigation kit close by at all times even though i'm only allowed two kits a month. This regularly screws up my sleep and causes me issues almost whenever i go places.

    When i first got paralyzed, i never could have imagined that i'd get fairly used to not walking, but that instead bladder issues would be the biggest hassle and frustration to deal with about being paralyzed. An 18 year chronic battle with simply getting rid of piss from my body/bladder.

  8. #1658
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    I picked the wrong time to get and watch 500 days of summer. Fuck I hate life.

  9. #1659
    Quote Originally Posted by kkmay View Post
    I picked the wrong time to get and watch 500 days of summer. Fuck I hate life.
    ???
    You will find a guide to preserving shoulder function @
    http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

    See my personal webpage @
    http://cccforum55.freehostia.com/

  10. #1660
    Senior Member keps's Avatar
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    Quote Originally Posted by Patty41 View Post
    Have you had a recent Urodynamic Evaluation? Might be well worth it and provide you with some good alternatives to an indwelling. Best of luck to you!!
    Quote Originally Posted by woman from Europe View Post
    Keps, I had never taken any bladder meds either and I have full control over my bladder and don't cath. But still my pressure in the bladder are too high and I have tried all the bladder meds and then I have to cath. I can keep 450 cc but normally I feel to go at 300cc.

    I have tried this because of all the UTI, the bad thing is I can't stand the bladder meds, I get headaches and so dry everywhere, even in the intestine, they want to try botox and then I have to cath again.

    But I think that if your pressure is too high, you maybe have to go too often. It is worth a try.
    It's been a few years since I had urodynamics. My doctor said my bladder filled and emptied "beautifully" or something. I don't know what my results were, but they seemed happy with them.

    I've been away for a couple of days, and for some reason I didn't need to pee loads at night. I'm back home now and have had a full bladder 3 times already since being in bed (it's 4.20 am here). I'm talking nearly 500 mls, 400mls and 300mls. Those were when I got ad. I don't understand how I can sometimes go to 500mls, then other times it's 300 or 250 mls.

    TheDuder - I wanted an sp, but my doctor told me it would be awful. He said I'd get stones, infections, bladder cancer, death. He said it would cost the NHS a lot of money to deal with the problems with an sp. That put me off, as I have at least been uti and stone free since injury. It's really the frequency of how much I have to ic that is getting to me. My bladder has definitely been the most difficult thing to deal with since injury too.

    Quote Originally Posted by kkmay View Post
    I picked the wrong time to get and watch 500 days of summer. Fuck I hate life.
    I don't even know what 500 days of summer is.

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