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Thread: mitrofanoff surgery coming up

  1. #1
    Senior Member jessie.gray's Avatar
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    mitrofanoff surgery coming up

    I am going to have a mitrofanoff surgery on May 30th, and would like some experiences from those who've had it done.

    How long does it take to recover?
    How long were you in the hospital?
    How many tubes did you have in your belly?
    Is it hard to cath through the stoma?
    Can you use closed system intermittent catheters in the stoma (these are what I'm using right now)?
    How sore are you after the surgery and recovery?

    I'm a little nervous about the surgery since I've never had it done before, so any experiences would be really helpful. Thanks!!

    Jessie

  2. #2
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    I personally had a had a hard time with mine , but everyone is different , right now I am using a balloon type catheter and only have to change it every 6 weeks , and with me I can drain into a foley bag , I have had problems with leaks , and a lot of Bladder spasms ,they tried everything to stop the spasmsfrom medication (4 different one ) 15 botox injections 15 of them and they even tried a Bladder Stimulator , but nothing seemed to work , so in my case I'm having a Bladder Bypass on May 26th ,but I want to wish you good luck and I hope you have better success than I had , good luck and may God Bless and watch over you LBUSH

  3. #3
    How long does it take to recover?
    It may take as much as a week to ten days. They will have had to take a piece of bowel out to do the surgery and you will need to wait until you start farting again before you're ready to go home.

    How long were you in the hospital?
    I'm the nurse, remember but in my experience with this it's ten days to two weeks.

    How many tubes did you have in your belly?
    Maybe none, maybe a catheter through the stoma. Probably a catheter in your bladder.

    Is it hard to cath through the stoma?
    No, it's really very easy to do and doesn't take as much of a pinch or hand function to do
    Can you use closed system intermittent catheters in the stoma (these are what I'm using right now)?
    You can use the closed system but I'm a skeptic about how much it helps.

    How sore are you after the surgery and recovery?
    This depends on your level of injury and intact sensation. It involves a small abdominal incision so your belly would be sore for a few days especially with coughing and sitting up. If you have a higher level of injury you need to be on the lookout for autonomic dysreflexia after the surgery and the proper treatment for that would be pain medicine.

    RAB
    Last edited by SCI-Nurse; 05-22-2006 at 01:17 PM.

  4. #4
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    Mitrofanoff Surgery coming up

    My son had Mitrofanoff surgery December 15, 2005. Someone wrote in detail about their experience on Carecure & I couldn’t find it. It was wonderful; because we knew exactly what to expect. I spent so much time this morning looking for it that I decided I should just write my own. So here goes . . . (If you don't want to know all the details, stop reading now.)

    Mitrofanoff: The surgeon takes a piece of appendix or intestine and attaches to the bladder and creates a new stoma in the belly button. Some people have theirs done on the side of their stomach. I am not sure why. I think it has to do with whether there is enough appendix to reach the belly button or previous surgeries. Nate’s doc preferred the belly button because he said there was less tissue to cut through. Made sense to us.

    They often do a bladder augmentation at the same time while they are in there. While Nate’s doc thought his bladder size was o.k., he believes it improves the quality of life when bladder is made larger. They use the colon to make the bladder larger. A side affect of this is that the colon still thinks it is still a colon and produces mucus. This requires flushing out of the stoma with saline. It is not a big deal. When Nate caths first thing in the morning and at night, I disconnect the catheter from collection bag and put the syringe in the catheter and insert 30 ml of saline and pull it out with syringe. It has been 5 months & we don’t flush twice a day any more. Usually just around bowel programs.

    We had an outpatient consult and then Nate was admitted for 6 days. I had a question about scarring. Nate has a scar from pubic area up to belly button. Not bad. He only wears a band aid over his stoma at Project Walk because it gets irritated from all the rubbing on mats, etc.

    Hospital Stay:

    Day One: Bowel Cleansing. I read on Care Cure that some people do this stage at home. Nate’s doc would have none of that. I think it is because they really monitor how the process is going. Due to how crowded the hospital was we did not get to Nate’s room and start the cleansing until 7 p.m. He was scheduled for 9 a.m. surgery.

    Had to cleanse until stools looked like “Iced Tea”. Started with suppository and Go Litely (not sure I spelled that right). Then progressed to some stuff that came in a small bottle and looked like 7 Up. Then progressed to Enema. We finished at 5 a.m. I stayed all night.

    The surgery lasted for 7 hours.

    I don’t think Nate got anything to eat or drink (not even ice chips) for two days. I think

    Day One – Cleanse. Stop eating after breakfast.
    Day Two – Surgery.
    Day Three – Nothing by Mouth
    Day Four – Ice Chips
    Day Five – Clear liquids
    Day Six – Regular Food

    During the surgery, they insert a suprapubic catheter. After surgery there is a collection bag attached to suprapubic and mitrofanoff. Just before we went home, the mitrofanoff was capped off. The suprapubic allows the bladder to drain without expanding and contracting & this lets the bladder heal. After Nate went home from the hospital to recover for a week or two, the suprapubic was removed and he was taught to use mitrofanoff during an outpatient clinic visit. They just pull out the suprapubic tube in the office. Here’s a tip: Cath just before your appt so you don’t leak when they pull the tube out.

    Nate is glad he had this surgery. His number one reason for having it was because of cathing pain. There is no pain cathing via mitofanoff. He also had a lot of UTI’s. Nate’s surgeon put him on 100 mg of Macrodantin once a day to keep uti’s away. He’s only had one uti since surgery. I have also read that the flushing with saline also helps remove bacteria from bladder and prevents uti’s.

    Nate learned about a clamp to help cath. He ordered it from Sammons and Preston. It is a neat little tool. He never cathed until he had the mitrofanoff. He has not had any problems. It has been WONDERFUL.

  5. #5
    Senior Member jessie.gray's Avatar
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    Thanks for letting me know all about that surgery. I have been nervous all month long becuase I have never had a surgery like this before. When my friend had it done (he just had a mitrofanoff done), he was in the hospital for 7 days with a tube in his nose, tubes all over his stomach, and other stuff.

    I have to do the Go Lightly stuff at home. The doctor didn't even mention doing it in the hospital. Man, that would be a lot easier than doing it in the trailer (I'm going to be camping with my grandparents up until the surgery and have to do the bowel prep next Monday, while we are camping.) All my grandpa told me was that the Go Lightly stuff tastes horrible and to drink it as fast as I could just to get it done and over with (he had to use the stuff before a surgery he had 2 years ago).

    I'm not worried about the scar. Since I don't wear two piece bathing suits, no one except the doctor and my parents is going to see it.


    I did have another question for the SCI Nurse: Do you leak a lot out of the new stoma? My friend did for a while and he just wore a urostomy bag over the stoma to catch any leaks in between cathings. Do I have to do that?

    Jessie

  6. #6
    Here's a link to extensive, previously posted personal experiences.

    http://sci.rutgers.edu/forum/showthr...ht=MITROFANOFF



    Good luck
    "We must become the change we want to see in the world." Gandhi

  7. #7
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    see Jessie everybody is different I had a really hard time and still am and here are others who had it really easy , I wish I could say the same I am going May 26 to have a bladder Bypass , I wish you all the success these others had and I will keep you in my prayers and thoughts and let us know how you make out may god bless and watch over you . LBUSH

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