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S-P catheter - What to expect?

Hello. I haven’t been diagnosed with MS (waiting to see a neuro) but after several years of bladder dysfunction and pain, and trying everyone else, I am having a supra-pubic catheter inserted.

I am terrified but hoping it will improve my quality of life.

Can anyone who’s had one share what to expect for the first days/weeks? I know it is going to be painful, but how painful? How long will it take to settle?
I am having botox injected at the same time, so hoping that will reduce the likelihood of severe spasms, but still very scared…

I’d be grateful if anyone could share their experiences.

:slight_smile:

I had a SP fitted 9 months ago and feel better for it. Fairly painless in initial operation and changes by nurses every 3 months ok. Just remember to take meds before changes and keep sp turned in stomach every morning. UTIs have reduced. Paul

Hello

Don’t be scared of it. Honestly there’s nothing to worry about. No significant pain, no real issues at all. And if you’re having simultaneous Botox, then you’ll probably find that you get used to it pretty quickly. Certainly the ability to sleep all night without getting up for the loo is a massive bonus.

Try and remember to always turn the ‘tap’ off after emptying your leg bag! I think it happens to everyone at least once.

And you soon get used to changing from a night to a day ‘bag’ and all that goes with it.

Untimately, I decided to revert to ISC after 6 months with an SPC. But for people with bladder spasms, bladder incontinence and many other issues, they are complete life changers - for the better.

Best of luck with it.

Sue

Hi, thank you both. I’m surprised that you’re both saying it’s not that painful. Someone is literally poking a hole in your bladder and abdominal wall and sticking some plastic through it (!!!)

Thank you for putting my mind to rest a bit.

The thought of being able to sleep through the night is the primary reason I am going through with it. I have to get out of bed several times before I can fall asleep and then my bladder wakes me a number of times. I haven’t slept a full night for years and I am absolutely exhausted.

I am going to be using a flip flo valve during the day and a bag at night.

Hi

I had one fitted a couple years ago. It’s made life so much simpler. I can’t comment on whether or not the procedure is painless, as I had a couple other things done at the same time. So while it was a bit painful for me, I don’t know which procedure was responsible for that. But now, it’s not painful at all, can’t feel a thing. I have mine changed every 6 weeks, and that’s a fairly straightforward thing. A district nurse comes round, and it doesn’t take long at all. Sometimes that can be a little uncomfortable for a few seconds, but it’s not painful.

Good luck!

Dan

I planned on a flip-flo for the day too. But half way home from the hospital, with flip-flo in place, I suddenly realised my lap was soaking wet. The catheter wound wasn’t sufficiently healed to be able to use a flip flo. So I had to use a leg bag at least for a while.

Later on when I’d decided to have the catheter removed, I did use a flip-flo. I wanted to make sure my bladder would still hold urine (thankfully it did).

The thing about the pain is that the wound itself didn’t hurt, maybe when twisting the catheter, or if you accidentally ‘pull’ on the catheter tube. And catheter changes can be a bit ouchy. My husband calls it the ‘oh F*ck’ moment!

Sue

Hi there MS folks & Dan,

I have in situ a SPC have done since Feb 2018 in fact. Yes it certainly is.better than my initial ureathral job! Gee Wizz that needed changing every 9 days! by the Community nurses. Phew. I am just using a flip Flo & Night Bag at present. Hope to get back into my old skirts. If they still fit! Well I do clean/turn the catheter. Can you or any seasoned SPC folk, please tell me the benefits of this method?

Thanks dizzy