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New Mitrofanoff, need some advice, please! =)

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  • 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
    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.

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    • #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! =)

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      • #4
        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.

        Comment


        • #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.

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          • #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...."

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            • #7
              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.

              Comment


              • #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
                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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                • #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

                  Comment


                  • #10
                    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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                    • #11
                      If its in the incision i would think the incision didn't heal correctly and may be like what you have said a fistula. Get to your urologist or surgeon and see what he says
                      T6 Incomplete due to a Spinal cord infarction July 2009

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                      • #12
                        Sorry it's taken me so long to respond back, thank you for all the advice.

                        I do have a fistula, the hole opened up and now there is that red meaty tissue (whatever it's called) poking through. And, unfortunately, I'm still leaking out of that and my urethra. I'm trying to cath every 2 hours but that doesn't seem to be enough.

                        I had an ultrasound done about a month ago and they had me come in with a full bladder, and then empty it for another picture, and I am getting most, if not all of the urine out when I cath so that was a relief. They said my bladder looked like it was full with about 120ML of fluid, is this normal? It doesn't seem like a whole lot but my bladder has never held urine before so will it stretch eventually?

                        My doctor wanted to give the fistula time to correct itself so I see him again in January. I just don't think that's going to happen though, correcting itself that is.

                        I've had a couple infections but the last round of antibiotics (knock on wood) seemed to work and I haven't had an infection in a few weeks. But because of the antibiotics I was taking (and my poor eating habits..whatever lol) I keep getting constipated (sorry!) last night I woke up and I was leaking urine out of the hole where I cath on my stomach. This hasn't really happened before, do you think it could be because I'm backed up and it's putting pressure on my bladder? I hope and pray I'm not leaking out of my stomach too. Leaking out of one hole is bad enough, I don't know if I can handle three holes leaking...

                        One more question about the fistula, I have a colostomy and with that I have a mucous fistula but it's flush with my skin now and doesn't cause me any problems. My new fistula sticks out of the skin a little bit and I was doing the treadmill the other day and when I got off I noticed it was bleeding pretty good (well, it looked like a lot but on the tissue there was hardly anything) I'm used to my colostomy stoma bleeding and I guess it's pretty much the same thing but it scared me silly. Do any of y'all have a bladder to skin fistula and how do you deal with it?

                        Sorry for all the questions, but thank you again for the previous replies.

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                        • #13
                          I can't help with most, but yes constipation can definitely press on the bladder and other things. I especially have issues with constipation pressing on my urethra. Before my supra pubic surgery I peed using crede sometimes along with cathing, and the constipation frequently prevented the crede from working.
                          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.

                          Comment


                          • #14
                            What did Urodynamics show your capacity and pressure with contractions to be before the surgery? If it was small, you should have had a bladder augmentation with the mitranoff. Are you on anticholinergics? the first six weeks after surgery you have to make sure there is not much pressure on the sutures or they will bust which typically means cathing every two hours , then three hours the first couple of weeks. You can't keep a tube in because it will possibly mess up the valve then you will leak.
                            Or they can do botox to bladder to increase capacity also?
                            We rarely do mitranoff except on those with underactive-areflexic bladder with large capacity. Also if you are having strong bladder contractions the anticholinergics will help that.

                            I would think to keep the bladder pressure down, increase capacity and cath more often will help with healing.
                            CWO
                            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.

                            Comment


                            • #15
                              The urodynamics test I had done pre-surgery said I had about 200cc capacity, but I've pretty much have the same size bladder that I've had since a child, because my bladder sphincter never worked, I just leaked constantly so my bladder was never stretched (I think). I'm not sure about the pressure though, I'm not sure that I was even told what that was. I was prescribed tolterodine tart (sp) but (and this is my fault) after taking it for several days I started to get really bad heart palpitations so I quit taking it and I never called my doctor for another prescription to try. Do you think it's normal to have that kind of reaction with a medication like that?

                              When you say you can't keep a tube in, what do you mean by that? I wear a night drainage bag at night (the only time I leave the catheter in) and that's usually when I leak. For some reason the catheter at night won't drain unless I hold the tube straight up in the air, my doctor said it was probably an air pocket, is this normal? It happens every night, and during the day where I can only hold about 100cc at night when I wake up after a few hours I can drain 300-400cc's at once. I don't know if that's because I'm laying down and my bladder is in a different position, I don't know why it happens. Do you think that stretching (that I'm getting overnight) could be bad for me or good? I kind of thought that any stretching, at least this far out of surgery would be a good thing, but maybe not.

                              Also, can weight gain affect the position of the mitro opening? The opening and where the fistula broke through was about 2 inches apart, and because of the stress this surgery has caused me I've put on about 4-5lbs and now the mitro opening and the fistula are about an 1"-1.5" apart. I'm scared the gap is going to keep getting smaller and smaller until there isn't one at all.

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