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.