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Thread: Those with augment & mitro?

  1. #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

  2. #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)

  3. #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

  4. #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)

  5. #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

  6. #16
    Senior Member Domosoyo's Avatar
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    Quote 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.

  7. #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.

  8. #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

  9. #19
    Quote 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.

  10. #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

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