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SPC leg bag versus flip flow valve

Hello

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.

Sue

Hi Sue,

You only get what you pay for.

My advice is, if it doesn’t work, take it back and get a refund.

No need to thank me me. I’m only too happy to be of some use.

Happy Groundhog Day.

Al.

Hi Sue

Something I forgot to mention.

I have a Male catheter as it’s longer than a female one.

I strap it in two places, The top strap just above my knee and the bottom strap as low as possible below that. As you know the flip valve was no use for me.

Shazzie xxx

Hi Sue

i have a male SPC and have used it successfully for three years now. I also use a chair and a drainage leg bag permanently. My bag is on my thigh enclosed in an aqua sleeve which is an alternative to straps which I recommend. Top tips…don’t let the bag become more than half full so that it doesn’t flow back and cause a blockage…occasionally extend your leg if you are able to allow the urine to move down into the bag…adjust your sitting position regularly by shifting your weight. I couldn’t use the flip flow unfortunately as I just bypassed all the time so I had no option but to use the bag. I don’t know how I’d cope without it now, I’d be completely housebound. I hope this helps.

mary

Hi Sue

I’ve got an SPC & am on wheels, but haven’t found gravity to be an issue. I’ve learnt from experience when changing bags that holding the catheter up above my bladder doesn’t stop it flowing out. But mine goes down a little bit, then along my thigh, and it flows out fine. Have you found it doesn’t drain then? You can get leg bags with longer tube length, so it straps round your lower leg. The catheter still needs to go along our thigh, but may be worth a go.

Dan

Thanks for all your input. It’s much appreciated. It’s such early days that I’m still trying things out and because I’m sitting here feeling like I want a wee all the time, it seems that more gravity is needed. But I’m probably just a tad paranoid at the moment.

Sue

Yes. Early days Sue. I was told that those feelings could be down to bladder spasms. You will get them at the beginning until your bladder accepts what’s going on.

Are you on any anti bladder spasm meds. I was put on Buscopan high dose at the beginning.

Shazzie xx

I’m not on any anti bladder spasm medication. I don’t normally have bladder spasms. Plus, I’ve had bad side effects from several of them. I’ll see how it goes and see my GP if I do find I’m having spasms. Really, the only ones I’ve had were when I was trying to use the valve as opposed to a leg bag. I’ve been having a bit of pain leaning forward but I suspect that is just because of the surgery, so it’ll fade away.

Thanks Shazzie.

Sue

Try not to lean forward…It can cause by passing. I shouldn’t, but need to sometimes. It can poke you as well! I should be so lucky!!!

Pollsx

Hello,

I can totally understand your predicament- as a mser also with almost an identical conundrum! I had my maiden change of SPC just recently and ditto regarding flip-flo. After reading your plight! I will put on hold the leg bag removable at the mo. I would prefer just flip-flo method as recommended by my ms nurse but can’t bear the possible consequence!

Any help appreciated?

Hello Dizzy

Well, everything has changed for me over the last year since I last posted on this thread. I eventually gave up on the SPC altogether. That was in September. I had go used to using a leg bag and immediately prior to getting rid of the SPC, I tried the flip flow again, just to make sure my bladder would still hold urine after being on free flow for 6 months.

The problems were infections, almost constant UTIs plus wound infections. So when I saw the urologist, she said she could just take it out there and then, I agreed and that was that.

I went back to ISCing. My problem has never been bladder spasms or inability to stop my bladder from emptying via urethra; it’s always been the reverse. I just can’t open my sphincters on demand so have to ISC every time. And that was fine for about 2 or 3 months. But then my urethra started playing up.

Since December, my urethra has been in a virtually constant state of feeling that I want to empty my bladder. The equivalent feeing is when you have a UTI and want to go, all the flipping time. It’s impossible to know if it’s the urethra having just had enough of being poked with bits of plastic all the time (ie ISCing) or whether it’s a neuropathic pain type thing.

Anyway I’ve decided to have a Mitroffanoff procedure later in the summer. This is where the surgeon creates an opening/valve through the abdomen into the bladder using the appendix as the (sort of) fake urethra / opening. And you can then ISC using this aperture into the bladder. It will either work perfectly, or if the urethra problem is neuropathic, it will only partially work.

With regard to your conundrum, eventually, just before I gave up on it, I managed to use the flip flow. So maybe you’ll just have to give it a bit longer, maybe wait another month, then stick a flip flow valve on and just see if it works. Stick a pad onto your SPC wound area in case it doesn’t work, and plan on staying home that day.

And Anthony recently gave someone else the advice, don’t wear light coloured trousers for a while, just in case!

Sue