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    Those with augment & mitro?

    I had my surgery for augment and mitro almost 2 years ago and have had infections about every 2 months. I have treated about 6 times and recently as soon as I go off the antibiotic (cultured and usually take Bactrim) it comes back as no fever/chills, but very pussy urine at the beginning and end of cathing. I irrigate 2/day and started taking more vitamins and immunity building supplements. I had to go in to ER 3 times when I was fighting the infection, my bladder was in a spasm and got too full and I couldn't get the catheter in after trying 2 hrs.

    My question is the dr said the infection (usually e coli) can be coming from inside since the augment material is from the bowel??? Her recommendation is to go on an everday antibiotic. I am not super sick, just more tired, some more neuro pain in general and more urgency.

    Does anyone with this procedure deal with constant utis even after developing a VERY clean method? I am also using Microcyn to clean the stoma before I insert and am instilling 20 mm before I go to bed and once again during the day.
    Help! I need to get this routine and my health under control. I am a very active para and am hoping to go on a 2 month mission out of the country next year and don't want to go if I am still unstable with the utis.

    Thanks

    ps I know there are a couple long threads about augment and mitrofanoff, but I couldn't find my answers there.
    http://www.laughwithmecrywithme.com
    my website & blog

    #2
    How much bowel did they use? The bowel will always put out mucous and pretty much always be + for organisms. How often do you irrigate? Don't worry about the sediment at the beginning or end. You should put in catheter, drain your bladder then irrigate with 50-60' ccs then drain it and remove the catheter. If you can't get catheter in then it most likely because of the mucous clogging it or a valve problem. You can use lubricant and also if you think you are in but no urine- go ahead an irrigate it.

    Are you on an anticholinergic? Or they could botox your bladder .
    Have you had video urodynamics so they can see what is happening?
    how much you hold?
    CWO
    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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      #3
      I've had my augment 15 years ago and have had my fair share UTIs. I would say you would be lucky if you can get it down to 2 to 3 (or less, but unlikely) symptomatic episodes requiring antibiotic per year. It's real important to clean that stoma area with soap and water every day, if not twice a day. Also I have been lately, when assistance is available, wiping the stoma area with a Betadine wipe or Betadine swabs. Anything to prevent pushing in the bacteria that are found in the immediate area of the stoma. I irrigate in the morning and evening. I also still 40 to 50 mL of hydrocarbons once a day, leave it in for 4 minutes, and then withdraw it using the syringe rather than letting it passively run out the catheter. I find this helps dislodge stubborn pieces of mucus. 15 years later and I still produce a lot of mucus.

      As is obvious, it is important to push a lot of water. However, this has the downside, in me, at least, of having to over catheterize during the daytime and experience quite a bit of leakage, since my bladder still very active in the voiding contractions will shoot the urine out the stoma. I do Botox once a year.

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        #4
        Originally posted by crags View Post
        I've had my augment 15 years ago and have had my fair share UTIs. I would say you would be lucky if you can get it down to 2 to 3 (or less, but unlikely) symptomatic episodes requiring antibiotic per year. It's real important to clean that stoma area with soap and water every day, if not twice a day. Also I have been lately, when assistance is available, wiping the stoma area with a Betadine wipe or Betadine swabs. Anything to prevent pushing in the bacteria that are found in the immediate area of the stoma. I irrigate in the morning and evening. I also still 40 to 50 mL of hydrocarbons once a day, leave it in for 4 minutes, and then withdraw it using the syringe rather than letting it passively run out the catheter. I find this helps dislodge stubborn pieces of mucus. 15 years later and I still produce a lot of mucus.

        As is obvious, it is important to push a lot of water. However, this has the downside, in me, at least, of having to over catheterize during the daytime and experience quite a bit of leakage, since my bladder still very active in the voiding contractions will shoot the urine out the stoma. I do Botox once a year.
        "I also still 40 to 50 mL of hydrocarbons once a day, leave it in for 4 minutes, and then withdraw it using the syringe rather than letting it passively run out the catheter. "

        I instill Hydrocleanse rather than hydrocarbons. It's a lot safer than putting crude oil into my bladder. Now that would give you some serious dysreflexia.

        Turns out I wasn't paying attention to my Dragon dictation.

        Comment


          #5
          Originally posted by SCI-Nurse View Post
          How much bowel did they use? The bowel will always put out mucous and pretty much always be + for organisms. How often do you irrigate? Don't worry about the sediment at the beginning or end. You should put in catheter, drain your bladder then irrigate with 50-60' ccs then drain it and remove the catheter. If you can't get catheter in then it most likely because of the mucous clogging it or a valve problem. You can use lubricant and also if you think you are in but no urine- go ahead an irrigate it.

          Are you on an anticholinergic? Or they could botox your bladder .
          Have you had video urodynamics so they can see what is happening?
          how much you hold?
          CWO
          Thanks Crags and Nurse. I did laugh about the hydrocarbons!

          I recently had a cystoscopy and everything looked good to the dr.
          My augment- They couldn't use the appendix. I don't know exactly "how much" they used, but I know it included the ileal cecal valve which helps with continence. The dr said that it holds 600-700 fine although I seem to feel uncomfortable at 500. I flush 2X a day and instill 20-30 microcyn at night. I just started taking an antispasmodic in the morning I admit, because I want to drink my coffee without feeling uncomfortable.

          I believe now that the times I couldn't get the catheter in was my fault of waiting too long and getting too full and it makes it hard to get through the valve. I have to be more vigilant about that now!

          I don't have serious uti symptoms, like fever or chills but more urgency, and a lot of thick setiment and pus at the end so I'm trying more D-mannose and a more alkaline diet. If that doesn't make me feel better and the urine gets worse, I may try the colloidal silver.

          Nurse, does being + for organisms mean that I can never get rid of e coli?
          http://www.laughwithmecrywithme.com
          my website & blog

          Comment


            #6
            Originally posted by crags View Post
            "I also still 40 to 50 mL of hydrocarbons once a day, leave it in for 4 minutes, and then withdraw it using the syringe rather than letting it passively run out the catheter. "

            I instill Hydrocleanse rather than hydrocarbons. It's a lot safer than putting crude oil into my bladder. Now that would give you some serious dysreflexia.

            Turns out I wasn't paying attention to my Dragon dictation.
            That's funny! Thanks. I have been prepping with microcyn and thought that would keep the bacteria away. What do you think of that?
            http://www.laughwithmecrywithme.com
            my website & blog

            Comment


              #7
              Prepping with the microcyn is not a bad idea. If it works for you, I would say keep doing it. Instilling with it also seems to help a lot of people. Given that your "bladder" is what was once a part of your bowel, getting rid of E.coli may be challenging. Since it is a natural part of our body, you want to make sure that you don't kill all of it.
              Being colonized is not the same as having an infection. Colonized means that the bacteria are present in large enough amounts to grow. You are not symptomatic.

              Hope that this helps a little.

              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.

              Comment


                #8
                Yes, thank you. I didn't understand that e coli would always be present when I decided to get the surgery. The benefit for me is that I am now completely continent as they closed the urethra which didn't hold back much.
                http://www.laughwithmecrywithme.com
                my website & blog

                Comment


                  #9
                  After 20 years, including a pregnancy, my mitro valve is closing down when full and I can't get in. This has been going on for a month now. I keep a cath taped in place every night. My capacity is suffering greatly. I have just had my 3rd round of stone blasting in 3 years. I also have a large uterine fibroid that may be putting pressure on my bladder? Have you, or anyone, resolved this issue long term?
                  Desperate to fix this...
                  "We must become the change we want to see in the world." Gandhi

                  Comment


                    #10
                    What does your urologist suggest? If it could be the fibroid, and it could, is there a way to decrease it's size or remove it?
                    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.

                    Comment


                      #11
                      My Urologist is not proactive at all about my stoma working. He suggested a foley. Foleys have never work for me - always leaked around pre-augment/mitro days, but now I have mucous & it clogs immediately. Giving up my mitro is not an option. He won't even do a cyctoscopy.
                      Do you know of any testing methods to visualize the valve?
                      "We must become the change we want to see in the world." Gandhi

                      Comment


                        #12
                        The stoma can be scoped or a retrograde dye study done. Is the urologist you are seeing the one who did your Mitrofanoff? If not, I would see someone who is expert in this procedure. You may need a conduit revision surgery. It is not uncommon to need this, esp. after such a long time.

                        (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


                          #13
                          Thanks for the response. The Urologist I see now is 20 years & 3000 miles from the one who did my surgery. Unfortunately, I am stuck with Kaiser and can't get around that. My current uro seems to know about mitros, though I can't say ow much experience he has with them. He mentioned the possibility of needing a revision but was pretty much against doing that, saying it was a major surgery.
                          He has blasted bladder stones 3x in the last 3 years. The 2nd time, I could feel a stone close to the valve. I was unable to get in, but after leaving a cath in place for 2 days all was good. This time, it's been 6 weeks. I can usually get in as long as I have less than 300ccs. After that, it shuts tight. This problem started 3 weeks before this last stone blast, when I started antibiotics (I am usually just colonized & don't treat). I tape a cath in place at night when I have most of my output.

                          As for the fibroid, I started on Lupron shots to try to shrink it by inducing menopause.
                          "We must become the change we want to see in the world." Gandhi

                          Comment


                            #14
                            You can request an "out of network" consult with a urologist who has done more Mitrofanoffs through Kaiser if you can get him to admit he has limited or no experience with doing the surgery or revision. It does take a bit of effort on your part to do this.

                            (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


                              #15
                              Unfortunately, I do think he has experience, he just doesn't seem to be willing to even discuss a revision, or even exploratory testing. He doesn't get what this means to my quality of life. I will try to push more...I know how Kaiser works. I have just honestly never had a 100% successful procedure with any of their doctors.
                              "We must become the change we want to see in the world." Gandhi

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