10 weeks ago I had a suprapubic catheter fitted. So far I hate it! I have had barely any advice from anyone as far as ongoing care, supplies and nothing on troubleshooting, and no-one to ask. I’m on my 3rd catheter and 2nd course of anti-biotics so far. Still having blockages, pains and spasms, sediment in the bags, and occasional urethral bypassing. I can’t seem to find a bag that suits short legs and allows for the routing of the tube without kinking the tube or folding the top of the bag over which blocks it. Has anyone else had these problem? Conquered these problems? Have any advice for me? Thanks!
I’m sorry you’ve been having these problems. I’ve had an SPC for a few years now. Overall it’s been a huge blessing, though I have had some of those problems.
I was having a major issue with blockages a few months ago. Thankfully that’s calmed down now after changing how much the balloon is inflated (it used to be 5ml, now it’s 7ml). That seems to have done the trick. However, I also started using bladder washouts. These are little bottles that attach to end of the the catheter, then you squeeze the liquid in & out a few times to keep the catheter clear. The district nurses, who come out to change my catheter, authorised it with Charter Healthcare, who supply the catheters and leg bags. Now I can just add them to an order.
Where do you get your supplies from? With Charter, there’s a veritable smorgasbord of supplies you can browse through, including differenet leg bags (I use Prosys ones). I also use Linc Open Tip catheters, which are meant to be better for blockages. Charter send a prescription request to my GP. When it’s authorised, it gets delivered to me.
Let me know if you have any questions.
I’ve been getting all mine from Welspect. I’ve been using Manfred sauer discreet leg bags and Qufora kit for bowels and i can get it all on the same day from them instead of waiting different days. I’ve got to have a cath change 5th oct so I’ll see if there’s someone I can ask about the balloon size. The main problem I’ve had is not having anyone to ask about stuff. I think the continence dept should have a ‘Tailor’ who can measure you up and advise on tubes and bags. I’ll try the flush stuff and the see what happens with my next change [I’ve also been told about Ascorbic acid to stop the blockages] thanks for the reply and advice.
I had an SPC a few years ago. I hated it, was plagued by wound infections and UTIs. I only had one blockage but didn’t like using it at all. After about 6 months, I saw my urologist and had it taken out.
Back to ISC and that works so much better for me. If my mobility declines much further, I may have the decision taken from my hands (ie if I can’t mobilise well enough to use the loo). But until that point comes I’m sticking to ISC.
(I use Charter for deliveries too. I think they’re brilliant, their ordering procedure is great and customer service is wonderful!)
I hope you get sorted with yours. If you continue to have severe problems; the UTIs, blockages, bypassing etc, you could get in touch with your urologist and see what they suggest.
Thanks Ssssue, alot of the trouble has been the urologist. When I had the thing fitted I was there for about 3 hrs, loads of info thrown at me before fitting and a boot up the bum after so I could make room for the next victim. I don’t know if its because of Covid but I didn’t get the chance to question and I wouldn’t have known what to ask anyway. It’s after I’ve got it I want to ask but I’m having trouble finding the ‘expert’ to question.
Hello again, just being nosey are you NHS? and who did you get advice from about which type of catheter to use and the balloon size?. The area I’m in doesn’t have anywhere/one to ask and it seems like I have a procedure and out the door with no aftercare.
Yeah, I’m with the NHS. It was the district nurse who told me about the different catheter, and also using a different amount of liquid to inflate the balloon. How often do yours get changed? October is quite a wait, so it may be worth having them changed more frequently. I started out at 8 weeks apart. But sediment would build up and cause blockages in the last week or two, so now it’s every 5 weeks.
I’d call the team who change your catheters, or ask for a referral to a continence nurse, to get their advice on products etc
Ok thanks for that, I’ll see what I can do.
I suspect it’s a problem with surgeons generally. Often they operate on patients without giving adequate information either in advance or after the operation. The aftercare (if you can call it that) tends to be left to nursing staff and that can be quite patchy.
So you end up at home with a new way of emptying your bladder and no real idea what happens next. I left hospital after my SPC operation with a flip/flo valve which I’d thought I would prefer to use. What I didn’t realise was that a flip/flo won’t work immediately as the wound isn’t healed. I ended up in the car on the way home with a complete bladder emptying through the wound.
I wasn’t aware of the possibility of more frequent changes either. It takes time and trial & error to learn what’s what with the SPC. (The same applied with my stoma following colostomy!)
In my area, there’s a team of community nurses who do catheter changes. I’ve only recently got their direct phone number! It’s only taken 4 years to get it. Until now, I’ve had to go through a ‘One Call’ service who then pass messages on.
If you find out your local service, you should be able to speak to them about more frequent changes of catheter. Generally, they’d expect you to have the equipment (in my area at least). So you might find speaking to Welspect is a good plan to discuss with one of their nurses what might improve matters for you.
Thanks for that, I’ve got the one stop thing here in Kirklees. I’m told to have a ‘change kit’ ready for emergencies and have never been told by the what it was, it was Dr Google that told me the answer.