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Thread: has anyone heard of this procedure or had it done??

  1. #1

    has anyone heard of this procedure or had it done??

    I had a Dr. appt with a new urologist this past Wed and Thursday to have a urodynamic test done and talk about having the Mitrofanoff surgery. Well, the urologist said he will be able to do the surgery even with the baclofen pump in me and he will NOT have to augment my bladder

    He then asked me how long it takes me to do my bp and i told him almost 2 hours EVERY morning. He asked if I'd like to cut that time down and of course I said YES!! He said there is a second procedure he can perform at the same time called The Malone Antegrade Continence Enema or MACE. Which is making another passageway like for the bladder only it will go into the bowel. All I would then have to do is put a catheter in the second stoma and push an enema in and wait 20-30 min to go to the bathroom!!! Because it is placed at the beginning it will push ALL of the poo out!! I will never have to worry about having bowel accidents again!!! might even be able to from every day to every other day (I hope.)

    So, I was wondering if anyone has ever heard of this or had it done?

    My anesthesia doctor wants me to be admitted the day before surgery for the prep so I don't have to do it in a hotel room and also that way they can monitor me in case my AD acts up.

    Can someone tell me what all takes place before, during, and after surgery? For the bladder anyway? How long do I have to wait before I can cath through my stomach? Does everyone have to have the ng tube put in before surgery?? I really do not want that!!

    Thanks everyone.

    Oh yeah I'm hoping to have the surgery in about a month!! I can't wait!! There will be no holding me back after this is done!!!

  2. #2

  3. #3
    thanks for the info thehipcrip. Very helpful! I can't wait to have these 2 things done!! It will make my life and my moms life easier!!

  4. #4
    Please keep us updated on your progress and how you recover and how well the procedures help you.
    May you have a safe and short procedure and recovery!


  5. #5



    I am having a mitrofanoff procedure done next month on the 22nd of March.

    I have had it done once 2 years ago using my appendix, but because my appendix were very small and not very good my tract has narrowed and i now cant pass a catheter.

    Wehn are you going to have your surgery? Which hospital are you having this done at?

    When i had my first one i did not have to have that tube in my nose, and i am hoping i dont this time.

    I am really scared as i was in a lot of pain when i woke last time when i woke up.


  6. #6
    Emma, please talk to your surgeon and to the nurses about the pain you had last time. It is unacceptable to have untreated and unrelieved post-operative pain in a hospital now days. The Joint Commission is very concerned about this, and if you experience this again, I would urge you to report this unacceptable practice to them. Insist that you get sufficient pain relief and treatment. PCA would be a good option for your initial management.

    I assume they will be using a piece of small intestine for your procedure this time? This increase the risk that you may have at least a day or two with an NG tube as the chances of developing and ileus are higher. Chewing gum 3X daily has been shown in some studies to decrease the incidence of and duration of post-operative ileus, so you might want to discuss this with your surgeon as well.


  7. #7
    emma i am having it done in boston at the childrens hospital. i just found out yesterday morning my surgery will be april 21 but will be admitted to the hospital on the 19 to put picc line in (thank god!!,) start iv abx, and for the good ol bowel clean out. i am guessing the surgeon is planning on using my appendix for one of the passageways but not sure what he's going to use for the other.

    i also was in a tremendous amount of pain after my last surgery to. i think mine was nerve pain though. i am not looking forward to that part of surgery!!

    Let us know emma how your surgery goes! i am guessing you will be out of the hospital before i go in. i am interested to know how yours goes and what you had to do for prep.

  8. #8
    I am confused. There is generally only one conduit or stoma created with a Mitrofanoff, not two, and if appendix is not available, invaribly small bowel is used (which usually does not require a bowel prep). Are you also having an augmentation?


  9. #9
    Nurse, I am also having the MACE procedure done which is the reason for 2 passage ways. One to the bladder and one to the bowel. I am thankful my urologist is happy with the size of my bladder so I will not have to have an augmentation done. I can hold about 200cc.

  10. #10
    Well, next Monday I will be on my way down to the hospital that is 4 hours away for my mitrofanoff surgery and MACE procedure!! The 19 is travel 20 they are admitting me and 21 is surgery/! I am really looking for to AFTER the surgery is done and being able to cath and start my bowel routine on my own!!

    I have not gotten anything in the mail saying I have to change my diet a couple days before surgery like I thought I might. I will call tomorrow to double check on this. The only thing I'm sort of nervous about is if I have to have an NG tube put in. I have heard they are not fun!! I'm not sure if I'd rather have that or drink the nasty drink.

    What is the recovery time most of you have had in the hospital? My surgeon told me 3-5 days but the pamphlet he gave me said 7-10 days.

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