It’s me again, constantly going on about my bladder (and bowels), sorry, it’s all about me me me me today.
As you may possibly know (!) I’ve just had an SPC. I was always planning to use a flip flow valve and that was fitted yesterday before I left the hospital. By the time I got home, I had bypassed through the catheter incision. Which it then did again, and again until I changed to a night bag and each time the bypassing was accompanied by hideous spasms. So I figured out that my bladder just doesn’t want to hold any urine in it at present and it will bypass the only way it can. If I had a typical neurogenic bladder, it would probably bypass via my urethra, but the sphincters controlling the urethra don’t work to release wee, so the only chance it’s got is the convenient hole cut in my abdomen.
So today I’m using a leg bag. But the problem is keeping the leg bag lower than my bladder in order to drain. I can’t really walk, so use a wheelchair and usually put my feet up as much as possible in order to stop my feet and ankles from swelling up. If the leg bag is on my leg, it’s got no gravity to work with. So I could adopt a Boudica style solution and keep it on my wheelchair in a bag low enough to drain. However, I also do a little bit of walking using FES and a walker. So for the 3-6 metres I walk a few times a day, a leg bag would work, but nothing else will.
Which is why I’d thought a valve would be the best solution. And in the long term I’m still hoping it will work.
So my question to all you SPC users is how do you manage your ‘outflow’? Does anyone manage to use a valve? How long after your surgery did you use the valve? Did you bypass whilst the bladder was healing? And if you use a leg bag and are a wheelchair user, how do you manage the gravity issue? Plus, if there’s any other SPCer who uses a wheelchair 90% of the time but also tries to do a little bit of walking, how do you manage drainage?
Any assistance or experience would be much appreciated. Obviously I’m already getting the invaluable wisdom of Poll and Shazzie. They are both utterly generous and kind. Thank you all for your help and guidance.