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    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.

    I had my surgery 6.11.09, my abdomen is still very distended and painful, did anyone else experience this?
    My tubes, staples and Jackson pouch are to be removed 7.7.09
    Last edited by Lorrie; 2 Jul 2009, 7:21 AM.
    "The sweet is not as sweet without the bitter"
    ~"Vanilla Sky"~

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      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
      "With my lightnin' bolts a glowin'
      I can see where I am goin' to be
      when the reaper he reaches and touches my hand."

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        Speak to your urologist. If they are not real experienced with this, ask them to refer you to someone who is...often a pediatric urologist since these are done in spina bifida kids more than any one else.

        Usually you start cathing yourself through it 4-6 weeks after the surgery. Until then, there is a foley catheter in the stoma.

        (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.

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          Originally posted by Lorrie View Post
          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.

          I had my surgery 6.11.09, my abdomen is still very distended and painful, did anyone else experience this?
          My tubes, staples and Jackson pouch are to be removed 7.7.09
          My belly was distended both times for almost a week and I didn't even have an augment. Maybe it's our age Lorrie Hope the pain ends soon!
          Embrace uncertainty. Hard problems rarely have easy solutions. Jonah Lehrer

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            I don't want to hear that Nicole!
            I see my doc Tues. I hope he gives some hopeful answers. My belly was much flatter presurgery. I hope it's temporary gas and or swelling.
            "The sweet is not as sweet without the bitter"
            ~"Vanilla Sky"~

            Comment


              [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

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                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)
                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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                  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"~

                  Comment


                    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"

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                      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

                      Comment


                        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

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



                          stephen@bike-on.com

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                            Originally posted by Lorrie View Post
                            I cathed first time today,
                            Yayyyy! I'm glad it's working out for you, Lorrie!
                            ____________________

                            "We are the ones we've been waiting for. We are the change that we seek."
                            - Barack Obama

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                              Awesome Lorrie!

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                                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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