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Feeling the need to pee 24/7 ????

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    Feeling the need to pee 24/7 ????

    My son (T-12 ASIA A Complete 7 mo. post) told me yesterday that he feels like he has to pee ALL the time, 24/7. Before AND after cathing 24/7. I asked him if this was new and he said "it's been like this since day one". He's never mentioned this before and it was only after asking him about different things e.g., new sensations, new movements, changes... . that he mentioned it. He said is terribly annoying.

    My question: Is this normal for SCI? I can't imagine. Of course, all this SCI stuff is mind boggling and normal isn't normal any more.

    History: He's had 2 UTI's (one in rehab and one shortly after he came home) He caths every 4 hours (ALMOST) We've never seen a urologist not even in rehab

    I'm going to make an appointment with a urologist first thiing in the morning, but thought you guys could provide some feedback PLEASE!!!
    FAITH: Is not believing God can, but knowing he will.

    #2
    i have that too, plus some times you feel like you are peeing or leaking but you not some times you are. Did the bladder study twice, pressure is good medication is working everything else you have to deal with. Dont stress about it slowly find somewhat of a balance.
    c6/7 incomplete 6/30/07

    whats that smell? its me, cause im the shit.


    если я сейчас умру то нахуй я родился

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      #3
      Another "benefit" of sci I'm afraid. Mine is, feeling like I have to crap 24/7, before/after doesn't matter, still there.

      All he can do is try and get used to it, not easy I know. If there was the slightest change in it, he might be able to use that to tell when to cath, but if totally constant, gotta grin and bear it.
      "a T10, who'd Rather be ridin'; than rollin'"

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        #4
        I'm an L1 injury and I had this too in the beginning, whether or not I had an active UTI. For me, riding in the car made it even worse, which was maddening. Luckily, it eventually just went away. Now, I have pretty much zero sensation in that whole region ("saddle area", bladder, bowel). I'll take zero over the crazy abnormal sensation anyday.

        Going to see a urologist is a good idea no matter what...try to find one with some SCI experience if you can.
        Strength does not come from physical capacity. It comes from an indomitable will. -Mahatma Gandhi

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          #5
          yep. All the time feels like I need to pee. It's maddening
          My blog: Living Life at Butt Level

          Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

          "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

          Dawna Markova Author of Open Mind.

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            #6
            Originally posted by Faithful1990 View Post
            My son (T-12 ASIA A Complete 7 mo. post) told me yesterday that he feels like he has to pee ALL the time, 24/7. Before AND after cathing 24/7. I asked him if this was new and he said "it's been like this since day one". He's never mentioned this before and it was only after asking him about different things e.g., new sensations, new movements, changes... . that he mentioned it. He said is terribly annoying.

            My question: Is this normal for SCI? I can't imagine. Of course, all this SCI stuff is mind boggling and normal isn't normal any more.

            History: He's had 2 UTI's (one in rehab and one shortly after he came home) He caths every 4 hours (ALMOST) We've never seen a urologist not even in rehab

            I'm going to make an appointment with a urologist first thiing in the morning, but thought you guys could provide some feedback PLEASE!!!
            How is it that no one insisted that your son have a urologic evaluation? It's essential that to choose a urologist that specializes in treating neurogenic bladders. Anyone with a SCI must have a urodynamic study to measure the filling and voiding pressures of the bladder. That may at least provide you with some insight into the his sensing a constant urge to pee.

            A couple of things to keep in mind: Your son's injury is still very recent and his body is still adjusting -- he may have only emerged from spinal shock, where many of the body's reflexes below the lesion level shut down. There are also certain foods that are irritating to the bladder. For me, I discovered that orange juice was giving me the sensation you're describing, plus it was creating more accidents. Coffee is even worse.

            The post-SCI bladder is one very mischievous organ. It's really tough to sort out its behavior and there is incredible variation in bladder behavior along the SCI spectrum. I have gotten incredible results from Botox injections, as have many others. It may be a tad premature to pursue this with your soon-to-be-discovered urologist, but you should definitely inquire about it and ask if he/she has experience with it.

            Keep us posted. And best of luck to you and your son!
            stephen@bike-on.com

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              #7
              [quote=stephen212;1059231]How is it that no one insisted that your son have a urologic evaluation? It's essential that to choose a urologist that specializes in treating neurogenic bladders.

              Well, he went to TIRR Houston for his Phase I Acute therapy, need I say more.... (we'll never again darken their doorway) They taught ONE class for 45 minutes about bladder care and it didn't even scratch the surface of the bladder issues for SCI. It's only because of this site that I am educated enough to even ask him questions and know to send him to a urologist. Thank you CareCure Community!!!
              FAITH: Is not believing God can, but knowing he will.

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                #8
                Oh my... I can't begin to imagine this 'feeling to pee' will last forever. I was shocked when he told me it's been there snce the beginning.

                Fortunately, I am blessed with an incredible young man that never complains despite SCI and all that comes with it.
                Thank you all for your feedback, it truly helps!
                FAITH: Is not believing God can, but knowing he will.

                Comment


                  #9
                  It may just be the injury level. Since he is still heeling lets hope that it goes away soon. I have pretty much had this since my injury. Some days are worse than others.

                  Somedays I feel like I am wetting my pants and the feeling goes down my legs. I check and everything is dry and I don't need to pee at all. Its like I feel the water going down the backs of my legs. Yet when I actually have an accident I can't feel it.

                  The sensations are quite strange for me at times. You do learn to deal with it though.

                  Sometimes if the need to pee is really intense, it can be your first indication that you may be getting a UTI. The urge gets quite worse when you have a UTI. That is when I start pushing lots of water. A UTI doesnt always show up on the urinalysis when the urge gets more intense or in my experience it hasnt.

                  He definitely needs to be followed by urologist. I am amazed that he did not see one in rehab. They ran lots of funky tests on the sphincter when I was in rehab in the 80's.
                  T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

                  My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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                    #10
                    t7-8, and yes, it is the same for me. It has been 4 years, and now I sort of ignore it, but if I think about it, it is still there. I guess you could compare it a bit t the idea that if you start wearing something all the time that is annoying, after a while you don;t notice it as much?

                    And yes, I have had all the urodynamics, it is just something that is part of the whole sci thing for me.
                    T7-8 since Feb 2005

                    Comment


                      #11
                      Hey Faithful...no advice, just wanted to agree with you that you did seem to hit the kid jackpot with your son. I can't imagine many 18 year olds not mentioning such an annoying sensation at all during almost a full year of their recovery period. Heck, I can't imagine many adults going that long without bringing up that they feel the need to pee all the time.

                      Establishing a relationship with a urologist before your son has an urgent problem that needs attention is a really good idea. Hope you're able to find someone who's both knowledgeable and personable.

                      --THC
                      It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

                      ~Julius Caesar

                      Comment


                        #12
                        Originally posted by thehipcrip View Post
                        Hey Faithful...no advice, just wanted to agree with you that you did seem to hit the kid jackpot with your son. I can't imagine many 18 year olds not mentioning such an annoying sensation at all during almost a full year of their recovery period. Heck, I can't imagine many adults going that long without bringing up that they feel the need to pee all the time.


                        --THC
                        Thanks thehipcrip.
                        Yes, I did hit the jackpot, he's incredible. During his first 10 days in the hospital/rehab, the only thing he complained of was lack of sleep and wanting his hair washed. TIRR NEVER did comply with his request for a shower or hair washing, so I finally got the trashcan, a trashbag and pulled him to the end of the bed and did it myself. He quit taking ALL pain meds 8 weeks post op and still (even with his intense and grueling therapy) doesn't take anything more than a tylenol "on rare occasion". He's amazing and I am so very proud to be his mother. I do believe he's taking this whole SCI thing 100x better than me and his dad. Thanks for letting me crow.
                        FAITH: Is not believing God can, but knowing he will.

                        Comment


                          #13
                          The sensations that your son is describing is normal with a sci. It seems as though the nerves can't get their act together after an injury and the neurotransmittors are also contributing to the senation. As you can tell, some people have the sensation all of the time, for others, it is only early in their injury. Unfortunately, each injury is unique and so it is hard to predict whether or not your son's sensation will change.

                          You do need to get your son hooked up with a good, reliable neuro urologist. He should have certain tests done on an annual basis. Since some urologic complications are silent (or without symptoms until they are bigger problems) this is an important part of routine sci health care. Make sure that the urologist that you go to is attuned to the needs of individuals with sci.

                          CKF

                          You do seem incredibly lucky to have a kid like yours!
                          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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                            #14
                            I feel this when my nerve pain increases and if it lasts for longer than a week,it's usually a UTI.

                            I hope he doesn't develop the other annoying sensations SCI can also give,esp.the 24/7 wedgie one.

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                              #15
                              During his first 10 days in the hospital/rehab, the only thing he complained of was lack of sleep and wanting his hair washed. TIRR NEVER did comply with his request for a shower or hair washing, so I finally got the trashcan, a trashbag and pulled him to the end of the bed and did it myself.
                              OMG, you have no idea how much I can relate to this!

                              I had to go seven weeks without a hair wash after my posterior and anterior fusions. The plan was to get me into the vest for my halo shortly after the second (posterior) fusion was done, which would have allowed me to be mobile. But complications left me stuck on a Stryker frame for an additional five weeks beyond the two fusions.

                              After almost two months of using the crappy dry shampoos, my hair felt and looked disgusting. The day I had finally healed enough to get my halo vest on and off the Stryker frame into a real bed, my favorite nurse Marion threw me on a gurney, wheeled me down to the bathrooms, and washed my hair five times. I remember the pure bliss I felt as she shampooed the ick out and poured that glorious warm water over my head again and again as well today as the day it happened (25 years ago next month).

                              I'm pretty sure that's exactly what your son felt when you washed his hair for him, and bet he'll remember you doing that, and so many other things, for him for the rest of his life. Moms like you rock.
                              It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

                              ~Julius Caesar

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