Hello advice please! Husband was diagnosed April 2018 with ppms edds 7. Since diagnosed he getting worse every day. Well past week he couldn’t wee he was trying but nothing would come out shakes in his legs weren’t helping ended up bruised. Anyway saw continence team on Thursday and she didn’t help she did a scan and new his bladder was past full he couldn’t go for wee whist there this been 34 hours since passed urine she said no medication will help and needs intermittent catheter but she didn’t want do it said district nurse can next week. Well Friday he was going crazy so ended up in hospital and straight away popped catheter in said nurse shouldn’t of left him like that. He felt so much pain it going in he scared to try intermittent ones now as they have left catheter in till nurse can come on Tuesday. Question is is there any medication that could help? Do you have to stay on catheter? Anybody got the one in stomach instead? Please need advice as nobody else helps I sick with worry I got nobody else talk to xx
hi traybenno
your poor husband.
i have the same feeling although mostly i can’t help peeing, any time, any place , anywhere (the old martini advert).
i self catheterise, it took some getting used to but can manage fine now.
don’t know how different it is for men.
i take betmiga/mirabegron as a med for it.
i think you are talking of supra pubic catheters - the one that is left in with a bag.
it’s a worry that the district nurse didn’t show up when so desperately needed.
i’d advise him to try intermittent self catheterisation first.
it’s good to take some control.
wishing you both well
carole x
I am appalled that the continence team sent your husband away without helping him! It’s not like she didn’t know that his bladder was full.How exactly did she think he would cope until this week? I think it is inhumane to have sent him away like that, If she couldn’t do it (although why a continence nurse is unable to catheterise someone is beyond me) then surely she should have sent you somewhere where they could have there and then! I am not a complainer by nature but seriously I think a letter of complaint about this is in order!
I agree with all the above. It’s unconscionable that the nurse left your husband like this.
You/he has several options for catheterising.
The first is what the hospital have given him, a Foley or indwelling catheter. I think the insertion of these is more painful than intermittent self catheterisation. And my husband described the removal of a Foley as the ‘oh f*ck moment’.
But the chaps on here who do intermittent self catheterisation (ISC) will tell you that it’s not as bad as that. For men, ISC is on the one hand easier than for women, as men can see where the catheter is to go, but on the other hand, because there is a greater distance between the urethra opening and the bladder, plus a prostate to ‘push’ past, sometimes more difficult. There a wide range of ISC catheters available and your husband could try quite a few out to help decide which is a) the easiest, and b) the most comfortable.
The other option is a supra pubic catheter (SPC). This is where a hole is made surgically through the abdomen. A catheter sits in the bladder in a similar way to the Foley type (held in place by an inflatable/deflatable balloon). Urine is collected in a bag, a smaller one for the day, and a 2 litre one for nighttime. The catheter is changed every 6 to 8 weeks by a district nurse.
Generally hospitals are keen to remove a Foley catheter and replace it with one of the other options. But it’s entirely up to you/him which you prefer.
I’ve been using ISC for about 7 years because I can’t empty my bladder the ‘natural’ way at all, and in general have had no problems with it. Because I have neuropathic issues with the urethra, I gave an SPC a go last year for 6 months. I gave it up after that as I still had urethral pain and had experienced several UTIs with the SPC. It was removed last September, I went straight back to ISC and haven’t had an infection since then.
Best of luck with what ever you and your husband end up doing.
I suggest a letter of complaint might be in order to the nurse who left him with a full bladder and no means of emptying it. And copy the letter in to her boss.
Sue
Complain, I agree with my sensible friends above it is shocking to be left in this predicament
A back up plan, stress makes it impossible for me to pee! I’d had a UTI (urinary tract infection) which doubled the problem, I sit on the loo and flush the toilet (husband should try it) the water stimulates my bladder. Not the easiest thing to explain but it works for me.
I had an operation 10 years ago and could not pee after it! A German nurse suggested pouring some warm water on my she called it ‘fanny’, this may not help bet maybe try making light using my example. That and peeing sitting down
Take care, be safe M
Hi,
I’m a male with bladder difficulties. I was uncomfortable the first time I had a catheter in me. Now I do it myself without any problem. It’s not painful, it’s only a very strange feeling that is upsetting at first.
It takes a few goes to get used to the sensation but I can do it myself very easily now.
I think your husband should try self catheterisation first. If he doesn’t like that then go for an indwelling catheter.
As Sue says, the stomach type is called a Supra Pubic Catheter and I would leave that to last if the other two options don’t solve his problem, because it involves surgery.
To answer your question I don’t know if there is any medication but I never heard of any.
I also agree with the others when they say that the continence nurse who didn’t help you should be reported.
Best wishes,
Anthony
Hello thank you for all your comments. I am going put complaint in tomorrow but is it right that the continence team don’t like to do it that what she said? I just can’t believe she expected him to wait till this week to go for a wee. Hubby so scared to try intermittent one now as this one was to painful plus he says how we supposed to intimate with each other haha. The bag the put on in hospital needs changing every hour and it a short tube so not got much sleep as got help hubby empty it his legs shaking terrible now. So it been horrible experience and husband feeling very down can’t get over how fast he progressing and you get no help of gp and ms nurse made appointment see her yet not for another 6 weeks so got just plod in and keep sane xx
Hi, I can’t understand why the specialist continence nurse didn’t help your husband. You have the right to ask why not. It’s very important to empty the bladder regularly. If left for a long time it can damage the kidneys and that is very painful and dangerous. Anthony.
Hi all what a day I’ve had! Firstly I put complaint in about continence team so get a call before of her saying she did nothing wrong said why he had go hospital? She bloody trying cover her back so I hung up on her. Own gp nurse said they don’t come do catheter ms nurse needs to arrange district nurse . Waiting on ms nurse ring tomorrow but just been collect night catheter bags and they arranging a nurse to come house tomorrow so happy days fun and games
hi traybenno
you are incredible for being so upbeat after such a dreadful experience.
what a relief to be getting some help tomorrow.
just a pity you’ve both had to wait so long.
good for you for putting a complaint in.
wishing you both well.
carole x
Oh and forgot to say hubby got infection now took sample to docs they rang to say go pick up antibiotics! So he got lot pain high temperatures and face gone west !
This is one of the side effects of having an indwelling catheter. Apparently, just the placement of a catheter permanently (semi-permanently at least) in the bladder can be the cause of UTIs. I was eventually told after 6 months of having a supra pubic catheter that ‘there will always be bacteria is your bladder because you have an SPC’. The same would be true of a Foley catheter.
I had my SPC removed in September last year. I’d had 4 different antibiotics in the 6 months of having the SPC. Since the removal (once I’d got rid of the infection!) I’ve been completely UTI free. And I use up to 6 or 7 self catheters a day.
I know you said it really hurt your husband having the Foley catheter inserted, but are you (and he) certain that this would be the case with intermittent self catheterisation? The catheter which you self insert is smaller and probably better lubricated than a Foley. They are often made of a special plastic that is ‘hydrophilic’. This means that it becomes very slippy when water is added. And each catheter is packaged with an amount of saline which you release to lubricate the catheter.
Perhaps there’s another continence nurse who could give you more sensible help and advice than you’ve had up to now?
I do hope the antibiotics work. (Please tell me the GP surgery sent the sample to the lab to check precisely what bacteria is causing the UTI? That would then dictate exactly which antibiotics are likely to work. But it does take several days for the lab to ‘grow’ the culture so the surgery generally prescribe something like Trimethoprim or Nitrofurantoin which don’t work on all bacteria!)
You and your husband are having the worst bloody time. You have my sympathy.
Sue
Got a problem the catheter doesn’t seem to be draining and now got blood clots I rang district nurse she tod me see how it goes! Is it something should be worried about? Plus as hubby had two testicular torsion he has chronic pain and a lot of nerve damage and scarring in uretha so think that why it so painful he got wait see a urologist
If the catheters not draining but he’s still drinking plenty (water especially obviously), then yes it’s a problem.
I must say your district nurses are absolutely cr@p.
Have you got a spare bag you can change over to? My OH has just said there was once a blockage in the bag when I had an SPC. We changed the bag over and it cleared. I’ve just checked my diary (very handily indexed for different issues) and I think I’d had a couple of times when there wasn’t much in the bag. I drank loads of water and it did clear. There were a few lumps of blood when I had an infection too. I noted in my diary that the lumps were quite sizeable given the splash as they hit the loo when I emptied the bag!!
So, what I’d do if it were me is drink a few pints of water (weak squash if he can’t stand just plain water, and/or with a straw if that makes it easier). Plus change the bag he’s using.
If it’s not much improved by the morning, get the district nurse to come and flush it. They can flush the catheter with a syringe of saline which is then withdrawn. That would clear any detritus from the end of the catheter that’s sitting in the bladder.
I hope it gets better.
Sue