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Can people with complete SCI tell when they have to pee?

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    Can people with complete SCI tell when they have to pee?

    I'm over 10 years post SCI now. Complete. T5. I intermittent cath. "Something" gives me a signal of when I have to empty my bladder. This isn't new but I do remember struggling with accidents my first few years post injury. And now it's probably been years since I've had one. I'm thinking at some point this "signal" became stronger or more noticeable because now there is no way I could ignore it long enough to where I'd have an accident. I'd be way too uncomfortable. It's very unpleasant. And I'd describe it as "my bladder is about to explode if I wait any longer".

    So what happened? Am I having like an AD episode each time my bladder gets full and I've just finally learned that it means I need to go empty it? Or is it more? Am I actually feeling some normalcy in my bladder? How come I can "feel" it but still have to cath and not empty it normally?

    What I'm really trying to figure out is frequency because I keep finding myself running low on caths before it's time for my re-order. Some mornings I'll wake up and pee at 7, and then by 8 I have to pee again. There is no way for me to just break it down to 4-6 times a day. Every day is different and I need to go at least 6 times. Usually more.

    Has anyone else had this kind of experience?

    #2
    I'm a T12 "complete" and I can tell when I have to pee. Although I have some sensory and motor sparring, but not enough sphincter response, in rehab, to have been labeled "incomplete". It just feels like "pee tingle" when my bladder is starting to spasm. I have about 90-120 seconds from there to cath without involuntary voiding. (This is without any interventions - on meds I can ignore the first couple waves of this feeling but not the 3rd!)

    I try to keep up with cathing to avoid this sensation because it is also associated with higher bladder pressures.
    "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

    "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

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      #3
      I'm defintely complete, complete, T8 or so. I can kinda sorta tell because I'll get abdominal spams, but I have some of those anyway and more often than not my bladder has already emptied by the time I feel that.

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        #4
        Originally posted by funklab View Post
        I'm defintely complete, complete, T8 or so. I can kinda sorta tell because I'll get abdominal spams, but I have some of those anyway and more often than not my bladder has already emptied by the time I feel that.
        So you probably stick with the "empty it every 4 hours" on the clock method?
        This is where I have a problem. Because sometimes I need to go every 2 hours. Unless I'm dehydrated. Even if it's only 200ml, that sensation to go is too much for me to hold and ignore for another 2 hours. So I'm using a ton of caths.

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          #5
          Originally posted by Barrington314mx View Post

          So you probably stick with the "empty it every 4 hours" on the clock method?
          This is where I have a problem. Because sometimes I need to go every 2 hours. Unless I'm dehydrated. Even if it's only 200ml, that sensation to go is too much for me to hold and ignore for another 2 hours. So I'm using a ton of caths.
          Nah my bladder is trash. Sometimes it holds 200 ml sometimes it empties at 50 ml for no good reason. Instead of going through life constantly dehydrating myself and worried about the next time I piss myself I wear an external cath and still IC every 4-5 hours. It’s definitely not ideal, but it’s been okay so far and allows me the flexibility I need at work and around town.

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            #6
            I press my hand on my bladder to feel if it's full.... if it's really full (1000cc) I can feel it in my kidneys. I try to keep a mental note of my intake and typically cat every 6 hours. Recently I started taking Lasix for edema in my legs and I know to cath more frequently after taking my meds or drinking my morning 20oz dose of coffee. Ideally I try to cath for 300-400cc.
            T12 Complete since 1982. TiLite Tx

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            • SCI-Nurse
              SCI-Nurse commented
              Editing a comment
              It is not safe to let you bladder get that full. About 450cc. is the max. amount that is safe for most people with a neurogenic bladder.

            #7
            Interesting thread. I am incomplete but my experience may be relevant. Over the years as my bladder slowly found some balance of peaceful coexistence with bacterial infection, my urgency is greater when I've been eating bacteria-friendly things like sugary things and bread, or when I am somewhat dehydrated. If it is bad enough I begin to have accidents. Barrington, the progression of your urgency may ahve something to do with bacterial count.

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              #8
              Took around three years before I could feel the AD caused by the bladder suddenly spasming. After five I could tell when it was full enough that it was about to cause AD. By ten years post I was able to feel a full bladder.

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                #9
                Waiting for signs/symptoms of AD to let you know your bladder is full if you don't have sensation is dangerous. Learn your body, and monitor your fluid intake so you can cath prior to your leak-point, or maximum safe capacity, which for most is about 450ml.

                (KLD)
                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                  #10
                  Originally posted by NorthQuad View Post
                  Took around three years before I could feel the AD caused by the bladder suddenly spasming. After five I could tell when it was full enough that it was about to cause AD. By ten years post I was able to feel a full bladder.
                  That sounds very similar to my experience. But that's what I didn't know... am I experiencing AD and that's how I know? Or is what I'm feeling more "normal". No idea.

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                    #11
                    In all likelihood, you are experiencing AD. What I find to be true for most people, is that they learn how and what symptoms may now mean. Waiting for AD to kick in is dangerous.
                    ckf
                    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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