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Thread: mitrofanoff enigma... Dr Wise Young and SCI Nurse, I am in need of your expertise

  1. #1

    mitrofanoff enigma... Dr Wise Young and SCI Nurse, I am in need of your expertise

    Good morning experts, I'm desperate!

    The following is a graphic description of my matrofanoff diary.

    I had mitrofanoff surgery in Jan 2014 and have had 2 additional surgeries since then, surgery #4 is scheduled for this Wednesday, September 10th. I've been off work, off my sports, off my regular life for 8.5 months and counting and have taken a toll, mentally. But what I'm complete confused and frustrated the most are 2 things which has completely puzzled both of my surgeon and family doctor: continues surgery on bladder and bowl/stomach issues.

    Feb: examination, difficulty cathing as well as bleeding.

    March: surgery to fix mitrofanoff, unable to cathe due to false pathway.

    April: Mitroffnoff started to leak 1 week after surgery.

    May: surgery fixed leaking issues, leakage stopped for 1.5 day.

    Mid-May: suddenly, bowl accident started to occur more frequent then diarrhea started everyday for 2 weeks until I saw my family doctor. By the time I finally go to see my doctor I had passed out 5 times due to high BP then drop to extreme low BP, diarrhea happens within 4 hours of food consumption. He prescribed Lomotil 2.5/0.25mg 2 tablets 2 times a day (then slowly ween off Lomotil) to control this issue. The medication worked but I am unable to get off the pill without having diarrhea.

    June: Examination for mitrofanoff cancelled. Family doctor encouraged me to stop using Lomotil, I managed to drop down to 1 pill a day but could not go down anymore. When I did try to stop pill, diarrhea happens within 3 hours guaranteed.

    July: my family doctor tested my stool and found all the antibiotics has caused problems in bowl and prescribed a heavy dose of Metronidazole, 500mg 2 times a day still taking Lomotil 1 pill a day. It worked for 4 days. On day 5, diarrhea came back with a vengeance and I felt I was going to die. After the antibiotics finished, I got a bladder infection as well as a yeast infection... all the worst I've ever had. My bowl routine also went out of the window and accidents on a daily bases. I'm still taking Lomotil 1 pill a day, no more diarrhea just accidents. My family doctor is stumped. Examination for mitrofanoff, plan for additional day surgery, looks like stoma not closing.

    August: Bowl accident continues to happen and if I have a good bowl routine, felt confident not taking the "pill of savior", I would have diarrhea of colored water.

    My body has taken a toll from not absorbing food, from blood pressure yoyo from 150 drop to 50 in 5 min, from loosing appetite for food, from have no energy to do anything or over using energy by making an attempt to do anything...
    Having 4 surgeries with no ending in sight, I'm lost for word...
    Having diarrhea all the time, fear of going out, fear of eating food, fear of squeezing my tummy, fear of having friends visiting, fear of my body starting to shut down due to lack of nutrients being absorbed...
    Most of all... I fear my doctor and surgeon continues to not knowing what's wrong with me or what to do with me...

    Dr. Young and SCI-NURSE and anyone else who might having any input, suggestions, anything really... I need your help!

    a frustrated CN
    "Always look at the bright side of life...."

  2. #2
    Mitranoff- I am assuming you just got the stoma and they did not augment your bladder- take part of intesting to enlarge it so you would have better capacity.
    Most likely leaking because pressure is high and capacity is low but what did Urodynamics shows? Urodynamics would tell you what your capacity was before you leaked? and the pressure? If you have neurogenic detrusor overactivity and small capacity with high pressures it may not hold asmuch. If underactive and capacity is good then need to check out valve and make sure closing.
    Are you on antimuscarin or Myrbetriq? Botox to bladder?

    Issues with stoma now?- they need to take a look if not done already.

  3. #3
    Dear SCI-Nurse,

    I did get bladder augmentation with the stoma. My capacity is between 385-535cc before leaking.
    I'm not on Are you on antimuscarin or Myrbetriq? and Botox to bladder has failed working for me when I had supra pubic catheter.

    Any expert guess/diagnoses on my bowl and stomach issues? Have you heard anyone having the same issue as me?

    thank you for your help!

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

  4. #4
    Even though your capacity is normal- are you leaking when full? before that?
    Have you checked for UTI? If totally clean, you should see surgeon to ensure valve is ok.
    You might try a low dose anticholinergic as you may be having strong spasms.

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