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Female SCI's - Bladder control/management

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    Female SCI's - Bladder control/management

    I would like to know how other female SCI's manage re: bladder. I am a T4 and self-catheterize most of the time. I am unable to do that from my chair due to spasticity and an additional injury to my left arm. So at least every 3 hours I have to get on my bed to catheterize. This really limits my independence and mobility and drives me nuts. Even doing it every 3 hours there still can be a leak so I need to wear pads too. From time to time I put in an indwelling catheter just for a break but then I run the risk of infection. Either way I get really fed up with the whole thing. According to a recent urodynamics test my bladder holds only 200 before becoming spastic and leaking. I take a drug, Ceris, morning and evening to ease the spasticity but frankly I don't think it does much good. My urologist suggests botox injections next but I am not really keen and anyway think that may only be a temporary solution. What experiences has anyone had with other solutions - such as Mitrofanoff/augmentation?

    #2
    Carbar-

    Are you able to transfer onto the toilet? I found that it is a lot easier to cath on the toilet than it was in bed. I have a lot of mobility now but when I was newly injured I cathed in bed. You also might want to try a different medication. I am not familiar with Ceris. I am taking Sanctura and it works really well for me. I didn't have great results with Ditropan XL but a lot of others do. I know a lot of people here have had the Mitroff. and they can give you their opinions. I hope you find some solutions here.

    'Chelle
    L-1 inc 11/24/03
    'Chelle
    L-1 inc 11/24/03

    "My Give-a-Damn's Busted"......

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      #3
      BroknWing. Thanks for your input. No, I can't transfer onto toilet so that is not an option. Ceris is the same as Sanctura I think - both have Trospium as their main component. I am taking 20g twice daily.

      Comment


        #4
        Do a search for mitrofanoff and augmentation, there are several threads on both.

        At c6c7 incomplete I also have to lie down to cath, it's a pain in the neck isn't it? Cathing from the chair is hard itself, then add clothing issues. Transfering to a toilet is work also unless you can find one that is level with your wc and how often does that really happen...then there is clothing and balance issues. I feel for you carbar.[img]/forum/images/smilies/frown.gif[/img] About spasms, ditropan has been a lifesaver for me.

        Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash
        Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash

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          #5
          If I were a woman there would be no question about having an augmentation and a Mitro done, I would just do it providing I had the hand function to cath through a belly stoma.

          Sure, its a lot to go through in getting it done. But that is the price you pay for the convienence and more care free life that comes after.

          Being a Male and having good hands, cathing every three hours out of the chair is really not that big a deal for me, thats why I never got an Augmentation done, although I did come pretty close about 15 years ago and then decieded to leave things alone.
          "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


            #6
            carbar - I would have to agree with Curt. Two of my former female patients have had Mitrofanoffs done. One is a C6 and the other a C4/5...both have so much more independence now that they have had this done. Recovery was fairly good, took awhile but they are glad that they went through with the surgery.

            For many posts on this topic:
            Mitrofanoff CRF
            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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              #7
              I can easily say that having my Mitrofanoff surgery is the best thing I've done with the exception of staying in school since my injury and 93. I function as a C6 and I've not had any problems after the month postop. If you have any questions please feel free to look at my profile and e-mail me. I'll answer anything I can about it.

              Aly

              The trick is in what one emphasizes. We either make ourselves miserable or we make ourselves strong. The amount of work is the same.
              Don Juan Matus
              www.cawvsports.org
              The trick is in what one emphasizes. We either make ourselves miserable or we make ourselves strong. The amount of work is the same. ~ Don Juan Matus
              We are Virginia Tech… We must laugh again… No one deserves a tragedy… We are strong, and brave, and innocent, and unafraid…We are better than we think and not quit what we want to be…We are the Hokies…We will prevail, we will prevail, we will prevail. We ARE Virginia Tech! ~ Nikki Giovanni

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                #8
                Originally posted by Aly:

                I can easily say that having my Mitrofanoff surgery is the best thing I've done with the exception of staying in school since my injury and 93. I function as a C6 and I've not had any problems after the month postop. If you have any questions please feel free to look at my profile and e-mail me. I'll answer anything I can about it.

                Aly
                the same here. I am a C6 and I had my operation in 1996.
                Get involved in politics as if your life depended on it, because it does. -- Justin Dart

                I shall not tolerate ignorance or hate speech on this site.

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                  #9
                  The best thing I ever did was have the augmentation. My bladder shrunk so, I could not hole 200 cc's. Peed on myself all the time and wore diapers. Peeing in my WC, in the bed, Changing cloths all the time don't happen anymore.
                  Mary
                  I want to Rock you Gypsy soul and together we will flow into the Mystic.
                  Van Morrison

                  Comment


                    #10
                    Carbar, I had a s.p., not the Mitrof., and therefore I have a foley. Since my sujury I have only had 1 or 2 infections that required treatment with antibiotics, and it has been 9 years since I had my sujury. I don't know how it is in France, but from what I have read on this forum the Botox treatments a still expremental here. I would be wary of if untill the full effects are known over the long term. I hope you find a bladder program that is right for you.

                    Linda H.
                    Linda H.

                    Comment


                      #11
                      I'm a T6 complete and I do self-cath. I'm far from being a fan of Mitrofanoff if you have full arm/hand function. To me, SCI and cathing are life changing issues but altering my body isnt when I can do easy alternatives. It wasnt so easy at the beginning but it takes time and lots of determination and stubborness to keep pushing foward. If I didnt like doing something one way, I'd "bust a gut" to find another way that worked for me. The mitrofanoff is an option, yes, but if I can move my fingers and self cath, I'm not willing to risk the samethings that happen when you pee from your uretha as peeing from your belly button. I for one would be miserable if I leaked or had a UTI and soaked the whole front of my abdomen b/c I had chose the operation to pee from my belly button...incontience pads work in the panties during those moments. I'm not sure how it works from the belly button. For paras, I just dont understand why one would lean in the mitrofanoff direction.
                      I'm 100% independent (besides floor to chair transfers) and I transfer onto any toilet to cath. Cathing from a w/c is highly difficult, imo, and very time consuming. Cathing laying down is time consuming.
                      I alter my clothes and I do get botox injections in my bladder. I'm guessing it only takes me approx 3 minutes to do a full cath (transfering onto toilet, cleaning hands and other areas, cathing, and transfering back to chair). I know people always say practice practice practice and we all get tired of hearing it, although it is true in many cases. I hope you find the answers you are looking for, and find a method that fits your lifestyle the best [img]/forum/images/smilies/smile.gif[/img]

                      Comment


                        #12
                        Thanks for the responses.
                        Sweetieheart - as good as your method sounds I know it wouldn't work for me. If I could cath on the chair or a WC I wouldn't even consider a Mitrofanoff. But spasticity and a shortened left arm prevent me from doing either and even if I did manage it I would need my arms to stay on! Leaving me with no hands to cath!! But as a matter of interest how exactly do you alter your clothes?? I wear trousers (pants) all the time. At first I tried to adjust them by putting in a velcro fastening between the legs but didn't find that very satisfactory (it didn't survive many machine washes).

                        Comment


                          #13
                          Some women just open up the seam enough and depend on their adductor spasticity and posture to keep their legs closed and the opening closed. Others have found putting in an "invisible" 6" zipper in the seam that runs from one leg to the under across the crotch works well.

                          (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


                            #14
                            I have a place that I order my pants and jeans that make them exactly to my body and will put velco or zippers in them. It is so easy to cath without pulling my pants down. I ordered my first pair and they were to baggy in the legs so I ordered the next pair and told her to take the legs up 1 1/2 in. in the legs , perfect. She keep my size. Called USA jeans.
                            Mary

                            I want to Rock you Gypsy soul and together we will flow into the Mystic.
                            Van Morrison
                            I want to Rock you Gypsy soul and together we will flow into the Mystic.
                            Van Morrison

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