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    issues with leaking

    My son David has had sci since 2008. During that time, his bladder leaked and I took him to at least 5 urologists to no avail. The one before last. did a urodynamics and opened up an old deep wound from when he had his accident and I kept it closed for 6 years. This guy pokes it open thinking it is his rectum. At any rate, I found an amazing urologist for him. He is an hour and a half away but worth it. He has started from least invasive and gone forward trying to find an answer. The leaking is not good for David's skin. The latest option he tried is botox and Ditropan. He also gave him a prophylactic antibiotic which I could never understand why no one did that before. The bladder is still leaking. The doctor will be seeing him again soon.
    My question is this, during the day, David does intermittent cathing and at night he uses a texas catheter. In the morning, there is no urine in the bed bag and David is laying in a puddle of urine. We are so confused as to the reason why. He even went down to a smaller sized catheter and it didn't work either. David is getting tired of it and wants a foley put back in. I told him that was not an option. His last uti from the foley almost killed him and I am not willing to take that chance. If anyone has any ideas what we can do to keep him dry at night, please let us know. It is so frustrating trying to find an answer as to why the urine doesn't go into the bag.
    Thanks a lot.
    DavesMom.
    Diane

    #2
    For myself as a female, I increased my foley cath size. For a while, I tried using a foley at night while working ... I would think that would be difficult with a long urethra (penis) though. Do his feet swell during the day? If so, that liquid tends to drain at night via increased urine output.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

    Comment


      #3
      Have you tried an external cath and leg bag?
      "Life is about how you
      respond to not only the
      challenges you're dealt but
      the challenges you seek...If
      you have no goals, no
      mountains to climb, your
      soul dies".~Liz Fordred

      Comment


        #4
        It sounds to me like he is kinking the tubing, catheter or leg bag in the night.
        What brand of texas catheter is he using?
        I have the same condition as your son. I cath during the day, but also wear the external catheter. When I exercise, or work I get some urine in the leg bag.
        I have used about every external cath on the market. I use one with an external foam strap and put a piece of athletic tape around the foam, gently, just to keep it stuck.
        I use to use surgical tubing to connect the cath to leg bag, but gave that up for a stiff plastic tubing, I get at the hardware store. No kinking it.
        Your son need to watch were his leg bag and tubing are in bed. If he rolls over, moves around, etc, he needs to check his plumbing to make sure he's not laying on it or kinking it.
        Its a pain, but most stuff about being a gimp is.

        Comment


          #5
          I don't see a level of injury in this post or in the profile. What is the level of your son's injury.

          What kind of night drain system does your son use?

          All the best,
          GJ

          Comment


            #6
            GJ, his level is a T5 complete.
            He is trying different types of condom catheters with the same results. He uses a Bard night time drain bag. I just have no idea what to try next.
            Baldfatdad, I don't think the tubing gets kinked but I wonder about the catheter. Something to look into. Plus, at night his mattress rotates but it did it even when I let him lay flat.
            thank you for your replies and any other thoughts you might have.
            Curt, he has not tried a leg bag at night. What would the difference be?

            Comment


              #7
              The leg bag is only used during the day, at night the bard should be fine. Have you tried the coloplast clear advantage external caths? The regular ones may not work that well if he retracts when he voids in which case you might want to try the SS ones (short sleeve). Once you get things down to a system with external caths and bags ( I use a Urocare Ex. large during the day and the bard bed bag at night) I think you will have your sons problem solved, it's all question of finding what works, everyone is different.
              "Life is about how you
              respond to not only the
              challenges you're dealt but
              the challenges you seek...If
              you have no goals, no
              mountains to climb, your
              soul dies".~Liz Fordred

              Comment


                #8
                Curt,
                I just called Coloplast and they are sending out samples. Thanks so much, it is worth a try,

                Comment


                  #9
                  What is the position of the night drain bag? Does it lay on the bed or hang over the side of the bed?

                  All the best,
                  GJ

                  Comment


                    #10
                    Daves Mom, they are called, the Freedom clear, I use a 28mm SS as I retract when I void, that did not use to be the case so I had to change to the SS a few years back and they work perfect. I almost never leak. I sometimes wipe off with alcohol pads before applying and they stick even better then, The key is to have the Penis totally dry before applying, if damp they will not apply right. I think this might be your sons solution. Good thing your getting samples so you can try different product and different sizes to see what works. I think you will find a solution that works. As far as the bags go, I use the the Urocares for a month each and clean them with bleach everyday at night after removing, pour a little bleach into the bag and fill it 1/4w with water and slosh it around a little and drain and good for the next day. Same with bard beg bags, I change them out one a week though. Good luck.
                    "Life is about how you
                    respond to not only the
                    challenges you're dealt but
                    the challenges you seek...If
                    you have no goals, no
                    mountains to climb, your
                    soul dies".~Liz Fordred

                    Comment


                      #11
                      Originally posted by DavesMom View Post
                      It is so frustrating trying to find an answer as to why the urine doesn't go into the bag.
                      Thanks a lot.
                      DavesMom.
                      Diane
                      Hi Diane,
                      Does water flow into the bag easily when it's being cleaned? The front and back of the bags have stuck to each other and blocked flow. It doesn't happen very often but it has happened more with leg bags, I think the anti-reflux chamber they put in them can stick together too. I've had to blow on the tube to open it up so it's not restricted. Or, put 100-200ml of water in the bag and leave it so it creates a space so urine can flow into it. And hang the bag over the side of the bed, if it's below him it will create a bit of a siphon effect which will help create a tighter catheter seal.
                      TW

                      Comment


                        #12
                        GJ, the bag hangs off the bed on the lower rail so it is below the bed level.
                        TW, I will check into that. I thought about that anti-reflux thing too.
                        Curt, I hope they send the Freedom Clear because I asked them for the Clear Advantage which is the one you mentioned in your first post. I did ask them to send a few different ones so he can try them.
                        Thanks for all your help and will let you know if we find an answer.
                        DavesMom

                        Comment


                          #13
                          Sorry about that Dianne, I coulda sworn it was the clear advantage I used from memory but it is the Freedom Clear, I hope they have both in the samples, I really don't know what the difference is between the two caths they both look the same, are latex free, not sure. The other thought why he could be leaking is that he voids really fast and hard, I had that problem when I was younger in my twenties, I'd pee so hard it would blow the caths off, now that I'm older and the bladder is more older I pee slower and don't have a problem like that. Make sure to use the large connectors and tubing.
                          "Life is about how you
                          respond to not only the
                          challenges you're dealt but
                          the challenges you seek...If
                          you have no goals, no
                          mountains to climb, your
                          soul dies".~Liz Fordred

                          Comment


                            #14
                            Originally posted by DavesMom View Post
                            GJ, the bag hangs off the bed on the lower rail so it is below the bed level.
                            TW, I will check into that. I thought about that anti-reflux thing too.
                            Curt, I hope they send the Freedom Clear because I asked them for the Clear Advantage and Freedom Clear which is the one you mentioned in your first post. I did ask them to send a few different ones so he can try them.
                            Thanks for all your help and will let you know if we find an answer.
                            DavesMom
                            As was stated earlier you'll have to find what works best for him by trial and error. I've tried the Clear Advantage and Freedom Clear, for me their adhesive is okay. If they don't work for him the two I've found with the strongest adhesive are these:

                            http://www.uromed.com/product/inview-extra/ these stick quite well and are what I use mainly now.

                            http://www.uromed.com/product/pop/ these are short, they're made for retraction issues. I don't have an issue with that but they have some brutal adhesive and being short they cover as little skin as possible, which is better for skin irritation and health. I've not had an issue with these leaking or keeping them on but they stick so good they can be tough to get off.

                            Both are silicone and Uromed will send a variety of samples as well. Their customer service is excellent.

                            Also, has he tried an external catheter during the day so he can monitor what is happening or where the problem is?

                            TW

                            Comment


                              #15
                              I have friends who use the Rochester wide bands too. For me those don't work, there is such a large strip of adhesive that as it wears it sticks together backs up and then I leak.
                              "Life is about how you
                              respond to not only the
                              challenges you're dealt but
                              the challenges you seek...If
                              you have no goals, no
                              mountains to climb, your
                              soul dies".~Liz Fordred

                              Comment

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