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    #16
    gjnl - oh I know, that was just more of a jest post, about being out. Learning that that type of device exists at all was the benefit of your post.

    crags - thanks for the good write-up, definitely give me things to think about, and more importantly, things to bring up in discussions.
    "a T10, who'd Rather be ridin'; than rollin'"

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      #17
      I use a baby diaper, the smallest size they sell, and just wrap it around my penis sort of like wrapping up a burrito and using the velcro tabs. It says on well and easy to change if I'm out and about and happen to leak. Plus they will absorb a lot.

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        #18
        McDuff, have you ever tried just wearing a leg bag?
        In 78' they sent me home from rehab doing IC and taking Ditropan.

        I like my coffee in the morning and a beer when I want (especially back then) and lots of water. I found bladder kicking off to be way too unpredictable, 3-4 months out went to leg bag / eternal cath. I use Bard 32 oz. bag and Rochester silicon external male cath non-adhesive. I rotate usually 3 bags, cath when I want, wash external and leg bag with water, a little Ivory soap and then run 20- 30% bleach solution through and put on rack to dry out. I clean lube off with some warm water and alcohol then slip on 1 of the other 2 dry bags.

        One thing I do and don't know why it works ( friction?) I use 2 foam male external cath straps. Rochester or Urocare, for some reason 2 straps holds , I rarely blow a cath.

        I don't bother with the leg straps. I'll check my gear after a transfer but usually the way it sits is more than enough to hold.
        My bladder usually starts kicking off around 300 cc's if I am active. I do find IC a lot easier when bladder full so works well that way.
        I use the same methods at night and sleep through the night without cathing.

        I realize everyone's bladder is different but if "kicking off" is the only problem this may be something you want to try before going down the path of surgery.

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          #19
          Originally posted by ChesBay View Post
          McDuff, have you ever tried just wearing a leg bag?
          In 78' they sent me home from rehab doing IC and taking Ditropan.

          I realize everyone's bladder is different but if "kicking off" is the only problem this may be something you want to try before going down the path of surgery.
          Reflex voiding was commonly used as the preferred method of bladder management for men with SCI in the 1960s and 1970s. In the mid-1980s we found that many men who were using this technique had unsafe high bladder pressures, and that these high bladder pressures were increasing their risks for upper UTIs, hydronephrosis, and kidney damage over the long term.

          Rarely is it appropriate now days for someone to use reflex voiding as a safe way to manage their bladder; certainly not without having urodynamics done on a regular basis to assure that high bladder pressures (over 40 cm. H20) are not occurring.

          (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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            #20
            Bladder augmentation. At 67 now I rather go with a indwelling catheter the rest of my life. Bladder augmentation seems like a big deal with 2 problems or more to go wrong. Hate to have 2 weak spots rather than none. I know cancer is the one problem with indwelling catheter but at 67 if I get anywere close to another 10 years my shoulder will be shot by then as they are bothering me big time as it is. A person at a older age is a big question as what one should do. What do other think?
            Art

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              #21
              Originally posted by SCI-Nurse View Post
              Reflex voiding was commonly used as the preferred method of bladder management for men with SCI in the 1960s and 1970s. In the mid-1980s we found that many men who were using this technique had unsafe high bladder pressures, and that these high bladder pressures were increasing their risks for upper UTIs, hydronephrosis, and kidney damage over the long term.

              Rarely is it appropriate now days for someone to use reflex voiding as a safe way to manage their bladder; certainly not without having urodynamics done on a regular basis to assure that high bladder pressures (over 40 cm. H20) are not occurring.

              (KLD)
              I greatly respect your knowledge and expertise. Countless times it has given me direction I needed.

              I may be misunderstanding McDuff’s original post. My post was solely trying to address the “leakage” issue he mentioned in his initial post. I am not suggesting that he stop IC by any means. I was just sharing a way I decided early on in SCI to avoid leakage or accidents.

              I don’t pretend to understand the importance and intricacies of urodynamics only that it is very important to keep an ongoing monitoring and scheduled checkups with one’s urologist.

              I realize now that concerns about bladder shrinkage mentioned in the post may be the reason for considering bladder augmentation surgery. I apologize if I was giving bad advice by sharing my experience, it wasn’t my intent.

              ETA: Art I am with you in general, I have had two hospitalizations since SCI. At 66 I am doing all I can not to get sliced and diced in a hospital. I would have to weigh each benefit and risk before any surgery.
              Last edited by ChesBay; 26 Aug 2019, 2:49 AM. Reason: Et: content

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                #22
                Thanks Everybody for resurrecting this post, damn, hard to believe it's been 2 months already since I posted this. Time is flying by as I get older(sorry Dad, you were right again).

                We have had a bunch of other stuff going on, so haven't made any forward progress on any decisions yet. I did get botox again and hit up the Uro about it again, but have not had an office visit yet to go over it seriously. Believe me guys, at 63, and have had way more hospital visits these last 16 yrs of sci than I ever could have imagined, I dread the thought of this major type surgery.

                Sholbert, thanks for another idea for capturing the unwanted pee.

                ChesBay, thanks for putting out how you manage, man we are an inventive group when it comes to making it thru our days. I have not tried using an external cath, due to the things like what KLD posted, and that others have had sphincterotomies(sp?), so that they could use them w/o getting any "back pressure" issues. Kinda spooked me off of them. Glad to hear that your process works for you though.

                Art, I've had to go the foley route a few times for various reasons, and I guess because I'm used to the IC route, I have not found using a foley and leg bag a comfortable idea. But as with anything we do in this sci world, I could get used to it, other shit we do is worse for sure.

                So, as my usual, stasis has taken hold for the moment, and I'm not sure what, if anything I am going to do yet.

                Thanks again y'all.
                "a T10, who'd Rather be ridin'; than rollin'"

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                  #23
                  I had the foley a few times to for a false passage. After while...3 weeks... I got use to it. Then going back to ic was a pain. I guess you get used to it anyway you have to.
                  Art

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                    #24
                    I am currently in the hospital recovery from the mitrofanoff and bladder augmentation. This process for me has been Brutal. The nausea and vomiting along has cause me to regret this but I can’t turn back now and I’ll just have to press through and see how it will all turn out. Because my injury is c4/c5, pain has not been a problem for me, but the extreme nausea and vomiting still is no better after 4 days post surgery. I haven’t been able to anything since Wed, the 26 and even very small amounts of liquids are coming back up. I’ve spoken with a couple of other ladies whose experiences were just as mine except they felt excruciating pain. They’ve both assured me that I’ll probably regret the surgery approximately 3 more times but if I just push through it will be worth it all. Just not having a leg bag of smelly urine on me at all times is worth it for me eventually. I hope this helps someone considering the surgery.
                    __________________________________
                    C4/5 functioning on a C6 level, use of left hand, no triceps

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                      #25
                      So sorry. I have seen the post-op paralytic ileus last up to a week. You should really not be attempting to eat or drink, and perhaps have an NG tube to drainage until you get active bowel sounds back, and you start to pass gas. Not really anything to be done to speed this process up. You should feel a lot better after your bowel starts to have parastalsis again.

                      (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.

                      Comment


                        #26
                        I was having similar problems. Kidney stones and diet were the culprits for me. Much better now since a change of diet and the surgery to remove the stones and taking nitrofurantoin and potassium citrate every day. Can hold 1000 ml if I have to, which was pretty much out of the question before. Not that I want to push it to that limit. But once in a while after drinking a few beers or sleeping in it could be that much.

                        I don't take the nitrofurantoin every day any more. But I keep it available. If I feel any bladder related symptoms I take 100 mg at night for one or two nights and I'm right back to normal. Game changer for me. Another plus is that I don't need a doctor or lab appointment and then have to wait for sensitivities. This way I get immediate results with no bother. So much more convenient and less pain and suffering than the old way of suffering while waiting for sensitivities and then taking a 10-day course of antibiotics, often to no avail.

                        Having said that, I doubt this same game plan of taking one dose of nitrofurantoin would have worked for me while I had the kidney stones. Nor do I think it would be as effective without good bowel care. Regular BMs seem to greatly help my bladder. I cut out sugar, wheat, and dairy from my diet, and ate just lean meats and steamed veggies for a few weeks. It was incredible how much difference that made for me. I was able to slowly introduce wheat and dairy back into my diet. Now I able to tolerate them whereas before I could not (and not even know it). I conclude that I can't have good bladder care unless I also have good bowel care.

                        But it's still not enough. Getting rid of the stones was also necessary.

                        My point is that medical issues and other health issues outside of the bladder may have a profound affect on the bladder.
                        Last edited by August West; 2 Mar 2020, 5:53 AM.

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                          #27
                          Originally posted by Buffie View Post
                          I am currently in the hospital recovery from the mitrofanoff and bladder augmentation. This process for me has been Brutal. The nausea and vomiting along has cause me to regret this but I can’t turn back now and I’ll just have to press through and see how it will all turn out. Because my injury is c4/c5, pain has not been a problem for me, but the extreme nausea and vomiting still is no better after 4 days post surgery. I haven’t been able to anything since Wed, the 26 and even very small amounts of liquids are coming back up. I’ve spoken with a couple of other ladies whose experiences were just as mine except they felt excruciating pain. They’ve both assured me that I’ll probably regret the surgery approximately 3 more times but if I just push through it will be worth it all. Just not having a leg bag of smelly urine on me at all times is worth it for me eventually. I hope this helps someone considering the surgery.
                          where did you have I wish I had earlier in this life but... I still think about how long u inhospital

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