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Thread: New Mitrofanoff, need some advice, please! =)

  1. #1

    New Mitrofanoff, need some advice, please! =)

    I've been Googling Mitrofanoffs and this forum keeps coming up so I figured I would ask a few questions, if y'all don't mind.

    On July 17th of this year I had the surgery to make it able for me to cath through a stoma, my doctor also tightened my bladder neck, made a sling for it and re-implanted my ureters.

    Everything was going great, I was sent home with a supra pubic catheter and about 2.5 weeks later I had it removed. This is where my problems started. When we got home from that appointment I went to cath myself and I noticed that I was soaking wet. I had noticed a hole in my incision about 1" below my stoma but my doctor looked at it and we both agreed that it was probably just on the surface, I was told to watch it but that it would probably heal. Come to find out, that hole went all the way to my bladder and I was leaking urine out of it. Fast forward to today and it's got a piece of tissue coming through it (my doctor thinks it may be the fascia (sp?) that he used to make my stoma coming through.) It's not leaking as much now, but it's still leaking a little bit. My doctor wants to give it a chance to close before we resort to more drastic measures like going back to the operating room. For now I'm leaving the catheter in and hooking it to a bag, but it keeps getting clogged and won't work half the time.

    Have any of you experienced anything like this? It's such a small hole but when it leaks, it soaks everything.

    Also, When my doctor taught me how to cath when he had me do it in front of him as soon as I hit the bottom of my bladder I had a sudden burning feeling, nothing major just a quick sort of sting. That's how I knew I was all the way in. I haven't had that feeling again but maybe 2 or 3 times. I'm really worried that I'm not pushing it in far enough. When I push it in I push it far enough that the catheter starts to bend, I don't know if I'm hitting the valve or if that's the bottom of my bladder. I just don't feel like it's draining properly and I'm so confused.

    Occasionally I will leak out of my urethra, is this normal?

    I just feel like this is not what I signed up for, I know that sh.t happens but I just feel like I didn't sign up for this. Please tell me it gets better, I hear all of these stories from people that say the mitrofanoff was a life saver and they would never go back but I'm just having a hard time right now and I need some words of encouragement, if you can.

    Thank you if you read this entire post and a BIG thank you if you can offer some words of wisdom. Please know it is more than appreciated.

  2. #2
    Senior Member ~Lin's Avatar
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    Is this hole from where the SPC was, or just part of the incision to create the stoma?

    I can't help, but think that clarification would help those who know and can respond. I'm new to this stuff myself and having a SPC put in Sept 5th.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  3. #3
    The hole is right underneath my stoma, in the middle of the incision. There weren't any drains there, my doctor and his nurse thought that it could be a fistula, but for now it's just kind of wait and see. It was also about the diameter of a fingernail, if that helps with a visual.

    Maybe that will make more sense! =)

  4. #4
    Senior Member ~Lin's Avatar
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    I would wonder how urine is getting there to be able to come out of the hole then. If it was a hole from the SPC, it would make sense to possibly leak urine while healing. But around the stoma since there is a tube formed from your appendix going from stoma to bladder, it makes me wonder where the urine is leaking out of the bladder from to be able to come out of that incision site.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  5. #5
    That's the million dollar question right now. We believe the hole is coming from the tube that connects my bladder to my stoma, but we can't understand why urine would flow up that channel. My urethra is tightened up, but I've leaked out of it a couple of times (catheter got clogged while I was sleeping and didn't realize) so we know that urine can escape that way. It just doesn't make any sense why it wouldn't take the path of least resistance. Our options are to either be patient and give it some more time to heal or go in and scope it with the camera, put another SP tube in and wait another 2-4 weeks to let it heal. I keep praying that it will heal, and it will go a few days and be totally dry and then BOOM It's leaking urine like a sieve.

    Hopefully I'm worried for nothing and everything will work out and this time next year everything will be in perfect working order.

  6. #6
    Hey M, not to scare you but I've been having a hell of time with mine, since my surgery Jan 15 this year. Leaking, definitely, heading back for surgery #4 next Wednesday to fix this. At least you are not having bowl problems too. I have a girlfriend that loves and swears by hers... me? I'm not so sure it likes me, but still hopes it will work out some how.

    I've almost debating to start a mitrofanoff support group for those of us that it doesn't work for.

    CD
    "Always look at the bright side of life...."

  7. #7
    Senior Member ~Lin's Avatar
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    Still can't help myself, but hopefully the thread being bumped will get the attention of the nurses or someone who can. How are things doing? any improvement?

    I can commiserate about leaking. I had my suprapubic put in yesterday and had to change the dressing around it hourly for a while. It started when the discharge nurse had no idea what she was doing, and disconnected the bag and put a cap on. When I went to get dressed I realized the dressing was soaked and I had a wet spot under me. She calls to ask what to do, and is told to read the instructions... So she didn't read them first!!! And they say how I need to keep a bag attached for the first week while its healing. Then I guess bladder spasms kept it going, but after I fell asleep when I woke up it had barely leaked. Gravity probably helped. Hoping it doesn't start up again. The spasms are not pleasant though, feels like I have to pee nearly nonstop. If I stay in the same position for long enough it stops, but I move and I guess the balloon moves and it starts again.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  8. #8
    Sorry finally saw your post
    I would ask the urologist to consider re- doing the opening especially if there is leaking right below

    pbr

  9. #9
    My urologist wrote in his notes,,,, (a place I can understand things) Mitrofanoff is the "Ultimate" for this patient.

    I only hope things get better..... much better

  10. #10
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    First, take a deep breath. I too had several "complications" after my bladder surgery. Soon after though I realized that for me, it was one of the best things I ever did for myself. I had a bladder augmentation along with the cateterizable channel. To answer your questions.

    You still are able to leak through your urethra. Consider it a "safety valve". The key will be to routinely cath to relieve that pressure. Drink enough water so that your bladder is not irritated by concentrated urine. Right now this will mean cathing more frequently. You will however get to every 4-6 hours.

    If the doc thinks there may be a fistula that is a new route that is formed to transport the urine. It will need to be fixed. It sounds like he is not sure that that is what is going on. He probably will want to scope it though to make sure.

    Also, you will become very experienced in the cathing procedure and know exactly how far to advance the catheter. For now, if you feel the "sting" (good description) you have hit the wall. Are you irrigating your bladder? If you aren't getting urine you may have a mucous plug. Irrigating will help.

    I had my surgery 5 yrs ago and am very happy I had it. You've asked very good questions. Keep asking. People here are so knowledgeable and willing to share and support each other.

    Keep us posted on what's happening. PM me anytime. Good luck, chris

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