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Thread: mitroffanoff experience

  1. #201

    Unhappy

    [quote=Lorrie;1064013]Annabelle, I don't think attaching a bag regularly is best. Your son's bladder could shrink and the catheter may cause uti. Besides tape, look for mefix.

    Thanks Lorrie , we are attaching a bag at night time as our son has had a bladder augmentation, and otherwise we would have to wake up every 4 hours to catheterise. I just think it would be too disruptive. We attach the bag to the catheter in his mitrofanoff last thing before bedtime, then remove it in the morning. I know, UTI's are a problem, he's already had another since his surgery and been back in hospital on IV antibiotics for 4 days. (I took him to GP when I suspected UTI, and he was put on an antibiotic which it turned out was not working, so had to rush him into Emergency Dept). He his feeling great now he's had his SPC removed. Just gotta be extra vigilant about UTI's and watch for all the signs (even though we have been ultra careful with hygiene etc). Have started giving him cranberry juice (I've heard it's really good) and also probiotics .... anything's worth a try! He had his surgery on 5/15 ... is getting used to having the mitrofanoff now. He's a bit reticent to do it by himself yet, but I am sure he will get used to it all in time. We are happy with the result ... he is dry, and the pressure is off his kidneys which is a big relief. Good luck and best wishes to you all xx

  2. #202
    Putting a foley into the stoma every night (using the require sterile technique and a new catheter each time) is not recommended (and is expensive). Reusing the catheters or using non-sterile technique is not safe. It is done by some, but is likely over time to damage the Mitrofanoff tract, and significantly increase the rate of UTIs. The purpose of a Mitrofanoff is to make catheterization easy for the person to do themselves. For any type of intermittent catheterization, regardless of the route, setting an alarm clock so you wake up to cath may be needed for some time until the person develops the habit of cathing during the night.

    (KLD)

  3. #203
    Quote Originally Posted by woody View Post
    im thinking bout the mitroffaoff,,,,, any one in miami area get it done,,,, i dnt no wherer to go
    also, how far does it go in to et urine....

    how long till i casn cath throu it
    Dr. Angelo Gousse did mine on June 11, 2009. He's a very competent surgeon and really cares about his patients. I cathed first time today, no troubles with exception of difficulties with catheter packaging. Going to try different systems. Mentor or Bard seem best in photos ¿

    The surgery is rough but if you are determined, you'll grin n bear it or cry like a baby as I did
    "The sweet is not as sweet without the bitter"
    ~"Vanilla Sky"~

  4. #204
    Hey Lorrie

    Congrats on using your mitro for the first time. Must be awesome to finally reap the rewards of the rough surgery. Good on you!

    I have a question about mitros, hopefully someone can answer.Perhaps it's a silly question.

    What does the mitro actually look like, are they all the same?

    From the photos on here and on the net, some look like open 'holes' with red tissue inside, others look like a dimple in the skin, and some seem to stick out like a bump. Does it make your belly button look like a bump if you get it in your navel?

    What stops bugs getting inside your bladder through the hole, if you go swimming etc?

    Thanks anyone for your answers
    "The impossible is just that which hasn't been done yet.Impossible is nothing"

  5. #205
    lorrie

    congrats on your surgery and on finally using it. you are a brave soul! i am sticking with my suprapubic, lol
    lola
    "All that is necessary for the triumph of evil is that good men do nothing" ~ edmund burker

    c4-5 quad

  6. #206
    Quote Originally Posted by Miss September View Post
    I have a question about mitros, hopefully someone can answer.Perhaps it's a silly question.

    What does the mitro actually look like, are they all the same?

    From the photos on here and on the net, some look like open 'holes' with red tissue inside, others look like a dimple in the skin, and some seem to stick out like a bump. Does it make your belly button look like a bump if you get it in your navel?

    What stops bugs getting inside your bladder through the hole, if you go swimming etc?

    Thanks anyone for your answers
    Not a silly question, we're women of course asthetics matter! Mine is in the navel and so far a year and a half post surgery it looks a lot like it did pre-surgery [I had a bump for the first couple months tho from swelling.] I look like I have an innie. The hole is closed unless the catheter is in it. I'll try to get a pic.
    Embrace uncertainty. Hard problems rarely have easy solutions. Jonah Lehrer

  7. #207
    Found using Google Images. Don't know how representative it is.




  8. #208
    Senior Member flicka's Avatar
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    Quote Originally Posted by Lorrie View Post
    I cathed first time today,
    Yayyyy! I'm glad it's working out for you, Lorrie!
    ____________________

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  9. #209
    Awesome Lorrie!

  10. #210
    Thanks everyone

    Miss Sept., I'm pretty sure if the appendix is used, you get the "outtie" effect. If no appendix, you get the fleshy type hole but they close around smaller with time looking more like a dimple. I'm sure the surgeons technique, stitching, scar tissue, healing...all play in to the end appearances.
    "The sweet is not as sweet without the bitter"
    ~"Vanilla Sky"~

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