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Thread: Mitrofanoff scar tissue

  1. #1

    Mitrofanoff scar tissue

    The entry to my Mitrofanoff is very constricted with scar tissue and the past few days has been extremely hard to get the catheter in. I use the stiffer clear silicone type. My Kaiser specialty Urologist is so overbooked I have been waiting 3 days since I called and couldn't get the catheter in to get an appt. for tomorrow.

    4 months ago when I complained of this, she said my only recourse is a big surgery where she redoes it, saying that she has to cut down to where there is blood supply. On the phone through the nurses this week she said she didn't want me to leave a catheter in to dilate it because it could damage it and if I had to to put this stoma bag on which tapes to my stomach, but she doesn't like that either. She is squeezing me in between other appts tomorrow. I called the original npn Kaiser dr who did the surgery and am willing to pay for his advice but he can't see me for a week.

    Nurse, or anyone, do you know of other options besides a big surgery. I almost died of infections last big surgery (mitrofanoff and bladder augment) and am honestly starting to feel panicked. If I can't get a catheter in I don't know what they would even do in the ER for me. SCI Nurse?

    Help,
    Breathe....
    Thank you....
    Last edited by darlagee22; 10-17-2019 at 12:36 PM.

  2. #2
    Do you know for sure it's scar tissue? I had problems getting in after 20 years of no issues. I would not allow my bladder to get too full. Then I would have to take a very stiff cath (no slight bend at the end, which I noticed only after issues arose) and I would insert it while slowly and slightly circling. Eventually I'd get a pop & get in. Without consulting my dr, I'd leave a regular cath attached to a leg bag taped in during the night until the bag filled. I got it working just fine, but still tape in for a few hours overnight. Someone recently suggested freezing the cath. I haven't tried that. Good luck! BTW, which Kaiser do you use?
    "We must become the change we want to see in the world." Gandhi

  3. #3
    I've been doing it with the stiff cath and circling it like you said for about 6 months. I don't know how to attach a regular cath to a leg bag. For some reason the dr doesn't want me to leave a cath in, but I think that's what's needed. I don't think she'll prescribe a bag, but I think I need to do that. I'll ask again when I see her tomorrow. She treats me like I'm obstinate for not wanting surgery, but I want to try everything else first.

    Do you know where I can order a cath with a bag I can put in overnight? That will arrive quickly and without a prescription?

  4. #4
    If you use a straight catheter with a funnel end, you can attach any drainage bag to it easily. You don't need a prescription to buy a drainage bag. Try Amazon.

    (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.

  5. #5
    Senior Member Domosoyo's Avatar
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    Also, couldn't you just cap the funnel end of the cath? When you need to empty take out the cap and direct the flow into a urinal. Not sure if you have hand function in which case forget I brought it up.

  6. #6
    Great. That’s what I thought but the dr thinks it will damage the tunnel or something. I see her today. Nurse do you know if it will and exactly what type of catheter should I leave in for how long to dilate and reestablish the opening through the scar tissue? I may have to go against her advice if I’m not wanting surgery.

    Thanks. Also I have fine hand function I’m actually a T12 and had it done becuz I constantly leaked every time I moved.

  7. #7
    In my experience, surgical revision is usually required eventually. Urethral dilators used for a Mitrofanoff may indeed damage the continence mechanism of the conduit.

    I would recommend a second opinion before having surgery though. It should be done by another expert in Mitrofanoffs, and you may need to request approval of a out-of-network surgeon through Kaiser.

    (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.

  8. #8
    Quote Originally Posted by darlagee22 View Post
    I've been doing it with the stiff cath and circling it like you said for about 6 months. I don't know how to attach a regular cath to a leg bag. For some reason the dr doesn't want me to leave a cath in, but I think that's what's needed. I don't think she'll prescribe a bag, but I think I need to do that. I'll ask again when I see her tomorrow. She treats me like I'm obstinate for not wanting surgery, but I want to try everything else first.

    Do you know where I can order a cath with a bag I can put in overnight? That will arrive quickly and without a prescription?
    You can order legbags on Amazon, or do a google search for legbags. Get 1000cc. Your usual catheters should connect easily. I can send a photo if necessary.

    Do you have a lot of mucous? If yes, catheter will get clogged and not drain. Happens to me often. I un-tape and do a bit of plunging (gentle in-out till it's clear).
    "We must become the change we want to see in the world." Gandhi

  9. #9
    I also would not leave it in full time, and try to do it when I know I won't be moving around - so it's pretty passive.
    "We must become the change we want to see in the world." Gandhi

  10. #10
    My augment is about 18 years old and there are times I just cannot seem to get it in or encounter some sort of obstruction on the path down. I've developed a life altering problems with my wrist and hand due to the way I, as a quad, need to cath. Perhaps if it was easier I wouldn't have this problem, though when physicians have checked it, they seem to be able to pop it right in. The doctor who did the surgery recommended coude caths, with the little ball and curve on the end. One would need to orient it upside down compared to urethral insertion, so the curve is oriented down as opposed to up.

    I was thinking about stomal revision as well, but was unclear as to just how big a deal it is.

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