As some have come to realise, from reading my blog, I have issues with my urinary tract. Specifically, I was born with a condition called Bladder Exstrophy. To help with trying to normalise my life the various surgeons over the years have done surgeries – and these surgeries will continue until the day I die – I am okay with this, as this is *MY* normal. I also have a mitrofanoff stoma, which means I don’t have a urethra anymore (it’s been closed off) and I am completely dependant on being to catheterise through my stoma into my neo-bladder (augmented with intestinal tissue as the blasted thing never grew).
So needless to day, I have bladder issues.
Today I went in to get two things accomplished – (1) a cystoscopy & (2) to get my foley changed; the latter of the two was accomplished. Though, the Sister did send off the old catheter for testing as there was some serious calcification of the catheter and something that looks like some bladder tissue (it hurt when the foley was withdrawn, it normally just tickles).
I was asked 2 questions by the Sister (Senior Nurse): (1) since Southampton General Hospital are experimenting with gentamicin bladder washes would I consider it, and (2) have I ever tried taking d-mannose (it’s a probiotic which is good at adhering to UTI bacteria and flushing them out of the system). I nearly laughed, though I know she was serious — the nursing staff are desperate to learn more and I am one of the few patients who is willing to chat about bladder issues.
The reason(s) why I nearly laughed:
(1) gentamicin bladder washes have been advocated for at least 2 decades in North America — why the hell isn’t the NHS clued up on this? My first inkling of this sad lack of knowledge was when I asked for a script for gentamicin 4yrs ago and the GP and surgeon looked at me as if I were completely nuts asking for IV medication. I would expect the GP to be confused, but a Urologist who claims to be a bladder reconstruction specialist not being aware of this was mind-boggling for me. I have been doing these bladder washes for 20yrs now.
(2) d-mannose has also been advocated for a long time in North America – I’ve been taking it for about 10yrs now.
I wouldn’t expect a urologist who specialises in prostates, testicles and all things “male” to be aware of this, but a specialist who knows that people who catheterise on a regular basis are highly prone to urinary tract infections, cystitis, and kidney infections? How the fuck can they not be aware? Do they not read the various medical journals? One of the best research & facilities in the world for Bladder Health is John Hopkins in Baltimore — do none of these UK urologists take the time to learn what is going on outside of the UK? Or are they so arrogant in their belief that they are the best they cannot be bothered?
This just continues to reiterate how shit the NHS can be when in comparison to other countries. Several things need to happen – surgeons need to be knocked off their pedestals … they are not gods/demi-gods, they are highly skilled professionals and well trained, but they are human and they NEED to keep themselves abreast of all medical research & developments. GPs need to learn their place – they are there to handle basic issues such as sore knees, handing out scripts, doing physicals and helping with general health maintenance — again, they are not gods, they need to listen to patients. It’s the god-complex here in the UK which is driving me nuts .. and I believe the nurses at SUHT like me loads because I do question the surgeons (called Consultants in the UK) and refuse to sign anything until I am fully informed.
So my recommendation? Inform yourselves, because the surgeons at SUHT are too full of themselves to actually educate themselves.