Announcement

Collapse
No announcement yet.

Those with augment & mitro?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    Originally posted by alissa View Post
    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.
    Sounds like a good plan.

    Comment


      #17
      Botox after Augmentation & Mitrofanoff

      I had my augmentation and mitrofanoff 9 years ago (2008). I had always suffered from UTI's and hoped that this would mitigate them. No luck. My doctors told me I'd need to get used to some level of e-coli in my bladder from the bowel tissue - which of course makes the mucous - and over time I probably did. I also used a med called Vesicare once a day and that kept me continent. In January I had botox treatments into my bladder so I could go off that medication (anti-cholinergics can be related to Dementia which my Mom has). The botox allows me to go a long, long time between caths if I want but I've had an infection since. I've tried all the antibiotics out there, my next will be intravenous style. I haven't had to flush in years and my neurologist says that's common and fine. He looks into the bladder and at the stoma once a year. I have previously been on a daily antibiotic (macrobid or nitrofurantoin) which worked quite well but I do know some people personally who now have lung issues from that (it is a listed side effect) so I've opted to not use that. I wonder if anyone else out there has had botox with side effects as since that time I've had uncontrollable spasms that are becoming dangerous. I know that a UTI can cause more spasms but this is ridiculous.

      Comment


        #18
        If the Botox worked, then it shouldn't cause spasms- just the opposite, it should relax the bladder and no spasms. Seems like it didn't work. We are using a half sterile water , half acetic acid(vinegar) solution irrigtiong 2-3 times a day.
        Some say it helps. D- Mannose is good for E Coli and that is all.
        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.

        Comment


          #19
          Originally posted by SCI-Nurse View Post
          If the Botox worked, then it shouldn't cause spasms- just the opposite, it should relax the bladder and no spasms. Seems like it didn't work. We are using a half sterile water , half acetic acid(vinegar) solution irrigtiong 2-3 times a day.
          Some say it helps. D- Mannose is good for E Coli and that is all.
          CWO
          I wasn't aware one can irrigate with sterile water/vinegar solution. Given that the vinegar is not sterile, will this be a problem, or is the nature of vinegar itself sufficiently antibacterial?

          I currently irrigate with saline, followed by hydrocleanse. However, the Hydrocleanse is quite expensive and if saline/vinegar solution would accomplish similar goals that would be helpful to me. Would this solution be antibacterial?

          Thank you.

          Comment


            #20
            Vinegar is acetic acid and water. You can get diluted acetic acid as a preparation to use as a flush/cleanse. You should never use full strength acetic acid too strong and harsh.

            Agree that D-Mannose is effective as a preventative supplement to use if E Coli (only) present in urine C&S.

            pbr
            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


              #21
              Wanted to update as its been 2 years sonce my original post. I'm doing great and haven't had an infection I needed to treat since then. When I was experiencing all the uti's I was under extreme stress with a sudden divorce initiated by my husband , moving from Hawaii to Oregon and learning to manage everything on my own. I wasn't sleeping well, eating well and was suffering a lot of anxiety.

              Now I am following the same bladder/mitro care of
              1) cleanse area well with baby wipe and microcyn
              2) Lube, cath without touching the catheter by holding it with its packaging
              3) Before bed, Irrigate with 2 syringefuls (240 ml total) then instill 30 ml of microcyn
              4) If any early signs of infection, take 1500 mg D Mannose 3 times a day and if worsens (while still no other significant symptoms) instill microcyn 2-3 X/day

              The problem I am having now is scar tissue building up on the top of the stoma and its kinda hard to get through it. I have to wiggle the cathter as I push it in. the dr. said she couldn't trim it but would have to surgically redo it cutting down to the tissue receiving blood supply. I sounded like a big surgery and I admit I tuned out at that point as I almost died from infection after my last surgery. So I'm going to keep managing it as is for as long as I can.
              http://www.laughwithmecrywithme.com
              my website & blog

              Comment


                #22
                Hi-a Mitrofanoff was a game changer for my daughter. When we had times that the cath was hard to get in we left a cath in the stoma all day and just capped it until we had to cath out. This really helped establish the entry. Another thing we noticed is the stiffness of the cath. If I irrigate I use a softer cath, a soft straight tip, sometimes that is a little harder to get in especially after she has been sleeping on her stomach for a few hours. I use a lot of lube and just go real slow with a little more force and it will clear what I think is built-up mucus. When my daughter caths she only uses a stiffer cath, the SpeediCath Compact, and never has a problem with the entry. Like I said, with the softer tip cath that only I use sometimes it is more difficult but never with the stiffer cath. Maybe you can give that a go and try keeping a cath in the stoma all day too?

                Comment


                  #23
                  Originally posted by SCI-Nurse View Post
                  Vinegar is acetic acid and water. You can get diluted acetic acid as a preparation to use as a flush/cleanse. You should never use full strength acetic acid too strong and harsh.

                  Agree that D-Mannose is effective as a preventative supplement to use if E Coli (only) present in urine C&S.

                  pbr
                  what would be ratio ? and what about flushing with a sp ? if I read this rightThis information is for educational purposes only. It is not intended to replace the advice of your health care providers.If you have any questions, talk with your doctor or others on your health care team.Vinegar Bladder Irrigation Protocolpatient educationDIS09212/29/14For patients on intermittent catheterization with chronic bacteriuria and/or chronic bladder stones, irrigating the bladder with a dilute vinegar solution can be beneficial.The recommended concentration is 0.25% acetic acid. Most grocery stores carry white vinegar as a 5% solution. Therefore, to make appropriate bladder irrigations, it needs to be diluted at a ratio of roughly 20:1.To achieve this, see the chart below to determine what amount of 5% white vinegar solution you should mix with your normal bladder irrigation


                  I could do this 2cc vinegar to 40 cc sterile water?
                  Last edited by vjls; 16 Jul 2019, 3:40 PM. Reason: clearify

                  Comment


                    #24
                    Originally posted by SCI-Nurse View Post
                    If the Botox worked, then it shouldn't cause spasms- just the opposite, it should relax the bladder and no spasms. Seems like it didn't work. We are using a half sterile water , half acetic acid(vinegar) solution irrigtiong 2-3 times a day.
                    Some say it helps. D- Mannose is good for E Coli and that is all.
                    CWO
                    I use saline twice per day and Hydrocleanse once per day, but I too so have persistent problems with infection. I will probably try gentamicin instillation, but I've always wanted to try vinegar instillation. This is the first reference I've seen to proportions of water/vinegar to be used (50/50). It is certainly a lot less expensive than either. Does one irrigate with it or leave it in for any period of time, be it a couple of minutes to the next time one caths?

                    Comment

                    Working...
                    X