Mitrofanoff Prodedure for bladder dysfunction

Everyday living
1

Hello all

I’m wondering if anyone here has had a Mitrofanoff?

(For the interested, it’s a method of creating an opening into the bladder using the appendix so it can be drained using a catheter. It means not having to either have a supra pubic catheter, nor having to use the urethra for an indwelling catheter or ISC. See http://www.mitrofanoffsupport.org.uk/mitrofanoff-procedure/ for more information.)

I’ve been using ISC for several years and have suffered quite a lot with urethral damage. So it feels like I want to empty my bladder all the time, it’s a similar feeling to having a UTI, but without there being an infection. Sometimes, there’s blood coming from the urethra when I catheterise. I had an SPC last year because of this problem but hated it. I ended up having a nasty wound infection, had several UTIs and basically felt just as I do now, like I had a constant infection, even when I didn’t.

I’ve had several other procedures which were hoped might help, Bladder botox, plus something called Cystistat (which is a weekly instillation of a substance that is supposed to provide better bladder lining). I’ve also tried various drugs, Betmiga gave me hepatitis, Vesicare gave me quite bad oedema (swelling of feet and ankles) and Oxybutinin just didn’t help as well as being a drug I don’t want to take. I’ve had urodynamic testing which showed that I don’t have bladder spasms, the problem is just that my sphincter won’t open at all.

The urology surgeon first talked about the Mitrofanoff procedure with me a couple of years ago. My MS nurse (who’s an ex Bowel and Bladder Specialist Nurse) again mentioned it to me the other day. So I suspect at my next urology appointment in 2 weeks, it may be discussed again.

The only mention I’ve found on here was from someone who’d had it done and was happy with it for several years, but then a few years later posted that s/he’d had trouble and was then using an indwelling catheter. But that person did have a neurogenic bladder, so had very different problems to me.

So, after all that, my question is, has anyone else had a Mitrofanoff? Or considered it and decided against it? I’d really like to have as much information as I can get prior to my appointment. Any thoughts would be welcome.

Thanks.

Sue

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My stepdaughter(who has cerabal palsy not ms) has, it was a pretty traumatic operation for her and us as she normally comes round really well and quickly but on this occasion we didn’t get any word for about 5 hours i think and were starting to really worry,when we did get news we found her in a single room in icu with nurse constantly watching her in a coma with all the tubes coming out of her! Very scary times

I will be honest i don’t know a great deal about it but was a huge improvement in her life and independance.She has had a few problems with it scabbing a bit sometimes and making it difficult to insert tube and problems with refusal to supply her with the self lubricating tubes which she finds easiest to use. I think it must have been about 5 years ago now and despite a few minor problems the overall thoughts are most definately positive,if you could hear the fond way she talks about the surgeon who did it you would be amazed,he must be in his 60’s i should think but its like she has a crush on him!

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Thank you for that. It’s a good thing to know that while it might be a longish operation, it can alter a life to that extent.

All I know is, I’m fed up with my bladder related problems.

And I do understand a about having a bit of a crush on a doctor. I used to see the lovely Prof G of the Barts Blog fame. And truly there is something lovely about him. It’s not right or proper, but it happens just the same!

Sue

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Actually its been over 7 years she has had it,she was 15 at the time! Brave choice for her to make. We are having a chat amongst ourselves me,her mum and our daughter and they know far more about it than me and understand pretty much all of your circumstances mentioned so i will try and send a private message(or 2!) with a little more detail of her experiences. If you are on facebook there are apparently really good support groups too. search mitrofanoff support

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I’d appreciate anything you can share. (Thank your wife and daughter please!) I don’t use FB so might not be able to see anything there.

Thank you very much.

Sue

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I’m bumping this up in case anyone else, especially anyone with MS has either considered and rejected the idea of a Mitrofanoff, or in fact had one. Many many thanks to Ol73 and family for sharing as much as you did with me. It’s a massive help to know other people’s experiences. I have my urology appointment next week when I am expecting to be discussing this, so any thoughts on the subject would be very gratefully received. Thanks. Sue

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