Hello everyone
I saw my urologist yesterday. It seems the time has come for me to join the merry band of people who use an SPC. She’s going to do it with within the next 4-6 weeks. She said it could be temporary just to give my urethra a rest or be a more permanent thing.
To be honest, I’m quite relieved as I’m flipping fed up with wanting a wee all the time or (my latest symptom) having an uncomfortable / burning feeling in the urethra. I’ve had Botox, and Cystistat, drugs aren’t helpful because as the urologist put it, ‘you’re unusual’. It makes me feel like saying ‘that’s the flippin’ trouble with MS, we’re all unusual’. But I didn’t. Too nice (except in my nasty snarly head).
The way in which I’m ‘unusual’ is that with me, it’s not that the floodgates open and can’t be trusted to stay shut, it’s that they will not open at all, ever. So I have to self catheterise all the time to wee. Some people would think this is miles better than incontinence, and in many ways it is. Except that there just are no solutions to either bowel or bladder emptying apart from surgical (and this is the year when I am taking control of both bowel and bladder and having surgery on both, so I also have questions about surgical procedures for bowels).
My questions to you brave warriors who have gone before me is basically what questions should I be asking? I can only think of stupid girly things related to clothes (someone - probably Poll - said, the trouble with getting a new bag is deciding what shoes go with it!).
But I think I should be asking more about cleaning the thing, emptying it, pain, using it, where the bag lives (I’m pretty sure that some people use a leg bag and some use a belly bag). Also, whether you need hands that work better than mine do to change from day to night bag. And are there loads more things I haven’t thought of.
Plus the question about clothes is kind of important. Will my existing clothes still work? I’m a jeans and t shirts kind of woman. Not terribly slim. Although I definitely look thinner when I stand up. Which isn’t often. So I do tend to wear quite baggy tops, but do all my clothes need to be looser?
Plus, does anyone use FES who has an SPC? Does one get in the way of the other?
Also, something called a Mitrofanoff Procedure was mentioned by my urology surgeon. Has anyone had one? It’s where they take your appendix (?) and make it into a valve / conduit for a catheter to go into the bladder to empty it.
And while I’m at it, has anyone had a PEC tube for their bowel? Its a bit like an upside down Peristeen - where the water goes in through a valve inserted through the abdomen higher up in the bowel rather than inserted from the anus end. I don’t think it would work for me because Peristeen didn’t. But any experiences are very welcome. Also any experiences of any kind of bowel emptying surgery, i.e. stoma, ostomy of any kind. Plus, has any one had a bowel prolapse? And has it been fixed successfully?
You can tell from all of this that my problems are not limited to the bladder. It’s basically that none of the sphincters work. So nit inky can I not pee, I can’t poo either.
Obviously some of these questions are a bit personal, so if you want to answer anonymously, that’s fine, or PM me. Any help is very welcome. Thanks.
Sue