Urinary incontinence product advice

[greybeard]

I've started having fairly minor but regular "urge" and "stress" leakage issues. I have been researching the various options available in the U.K. and could do with some advice from those similarly afflicted. I would prefer to be able to deal with this without physical help from another but realise this may not be possible.

(Apologies for the excruciating detail!)

I have a long body, short arms, an increasingly inflexible back and a large gut. I am only able to reach my *very* retracted, permanently flaccid penis with one hand at a time - and only with difficulty. It's obvious that fitting any sort of sheath or intermittent cathing by myself are out of the question.

I've tried absorbent disposable pants but hated the way they bunch up to form an uncomfortable lump under the perineum.

I'm currently using what many suppliers call "shield" type pads that I'm buying online. They are not always very comfortable, but they seem to work reasonable well for minor spills. They've proved unreliable at retaining anything more than small volumes.

Are they available on prescription for SCI in the U.K??

As far as I can see the only other option is for an indwelling, Foley, type cath. The only time I have had one was for the couple of days after spinal surgery. I recall it wasn't too comfortable as it kept being pulled as I moved, but the tube hadn't been secured in any way.

Do you get used to them in time?
Do they still tend to pull even if the tube is secured?
How long is usual between changes?
Are they changed by the district nurse service for sterility reasons?
I assume these are definitely available on prescription. Am I correct?

Think that's all the questions for now.

Please suggest any alternatives that that might work for me that I've missed.

Thanks in advance.

[Irving]

What's your injury level & Asia score? How much sensation do you have?

[greybeard]

No idea about asia score but was diagnosed with severe stenosis L2 to L5 central canal and foramen - eventually described by surgeon as "a complete mess". (Which is a pity remedial surgery didn't happen until 5 years after diagnosis!! The spinal surgery unit in Dorset was just being set up at the time. My surgery was in Salisbury spinal unit but no aftercare there or anywhere else. All a bit hit and miss) None, or minimum sensation in lower legs. Little motor control and patchy sensation deficit from hips down. Still get burning nerve pains in thighs. Able to balance on heels for a few seconds with support, and can transfer between seats.

[Burgerman]

Please suggest any alternatives that that might work for me that I've missed.

Get it welded up.

Not very helpful I know. Sorry. Indwelling catheters would seem like the only sensible solution.

[Irving]

Long term would be better to have a superpubic catheter fitted. Less likely to get bladder infections.

[greybeard]

Please suggest any alternatives that that might work for me that I've missed.

Get it welded up.

Never done welding. Would solder do instead? Something I can do with a blowtorch?

[greybeard]

Long term would be better to have a superpubic catheter fitted. Less likely to get bladder infections.

Hmm. That's a general anaesthetic job isn't it? Hadn't though about that. Under normal circumstances I would agree.
I have COPD and other breathing issues so not too enthusiastic about anything other than local anaesthetic stuff unless it's the life-saving kind. Thanks for the suggestion, though. I'll discuss it at decision time.

[Irving]

Long term would be better to have a superpubic catheter fitted. Less likely to get bladder infections.

Hmm. That's a general anaesthetic job isn't it? Hadn't though about that. Under normal circumstances I would agree.
I have COPD and other breathing issues so not too enthusiastic about anything other than local anaesthetic stuff unless it's the life-saving kind. Thanks for the suggestion, though. I'll discuss it at decision time.

Nope, I had mine done under a local as I have no sensation below shoulders, but they could do an epidural block.

[greybeard]

Just found a site that says they can be local or general. Local would work well for me I think. Got a delay now because the GP now wants another ultrasound despite me having one and a clear cistoscopy a couple of months ago.

[Burgerman]

I too have a long body short arms... And am fat! If laid on a bed flat, I wouldnt be able to do the convine thing either.

Have you tried an electric bed, and a mirror (mines on a microphone stand) so as to see well and be sure no wrinkles etc? Because that makes it pretty easy for me.

[greybeard]

No electric bed, but your method might just work by using the tilt/recline of my chairs, escpecially the Puma where the armrests can be shoved out of the way to let me get my legs apart a bit. I'll have a play when I get hold of another sample or two. The last lot went straight in the bin when I saw what gymnastics would be required!

There are lots of different makes of sheath. Most people seem to refer to Convenes but I wonder if that's a bit like referring to vacuum cleaners as Hoovers. Which is the easiest to use and most reliable for adhesion/comfort? Haven't had hands on one yet but I do like the idea of the pull-up tab on the convene. It must help when working largely one handed.

Nobody has yet answered my question about whether this stuff is on the NHS or whether you need to buy them. Which is it please?

[Burgerman]

GET the NHS to do you a loan electric bed. Tell them why and tell them you want a bariatric one. 48 inches wide. I cant do it in a chair. Too fat and not enough room! You must get one. And you must "massage your penis" a little until its worth putting a conveen on. I wont explain that!!!

Theres many types, only "clear advantage" work well for me. Your mileage may vary. They are various sizes. If in summer you get retraction issues or sweat issues and they dont stop on, then theres a medical adhesive - holister 7730 spray designed for ostomy use. It also works on penises!

I will only use it if I am out for a day where I cant check easily and will be back late. Just in case. GET some CLEAR ADVANTAGE conveen samples for free - call the company. (Bard?) The thing MUST be semi erect and bone (wrong word) dry. I have pedestal fan next to my bed because drying time can be important if you dont know when you might pee! Then roll it on.

You WONT be able to do it without an electric bed and a mirror on a microphone stand. Well you might but it wont stay on... With some practice it becomes easy. Even though mine is not quite as majstic as it once was. Spinal injury causes it to go like you just jumped in a stream. When you have not. Viagra still works OK though! Back to normal!

[Irving]

Nobody has yet answered my question about whether this stuff is on the NHS or whether you need to buy them. Which is it please?

If you're registered disabled everything, within reason, is available on NHS. Contact your GP (or better, get him to refer you to District Nursing Team - mine are much more amenable/proactive). This last 3 weeks I've got an alternating air mattress and an alternating air seat cushion requested from DN and both delivered within 24/48h, plus various dressings. All appliances, such as catheters, leg & night bags, gloves (sterile & non-sterile), incontinence sheets, etc. turn up like clock work every few weeks.

[greybeard]

Thanks guys. Plenty to mull over.

[Burgerman]

And theres this:

[greybeard]

Tried that. Now you know why the little bugger hides from me. Thinks I'm gonna start tightening that hose clip on it again.

[greybeard]

Well guys, I'm experiencing my first day with an indwelling urethral cath and can see it may take some time to get used to it. I'm told that blood in the urine is not unusual at first so not overly concerned about that.
What does worry me is that I'm still getting the urgent feeling of a need to pee, but have to lift myself off the wheelchair seat to empty the bladder and even then I need to contract the bladder muscles to get a flow going.

I thought that with the FlipFlow valve open, gravity would do all the work and I wouldn't even know about it. But that's not what I'm experiencing. Whether this is because of the design of the wheelchair seat pad, I don't know, although it does seem to be the same on every seat I've tried. Gravity certainly does seem to be involved but only by squashing the urethra and cath by my bulk.
Any suggestions please?

Have to say that even after just a day, I'm wishing I had the suprapubic option. I think I'm going to push for one. Questions about SPC - with one in place, can the penis still leak involuntarily? - Does a SPC ensure complete bladder draining?

BM - Adult social care are finding me a bariatric hospital bed! Thanks for the suggestion. It also looks as though they will replace my aging and unreliable stair lift, and because it takes a minimum of 7 transfers to get to the upstairs toilet, they want to install a wash and dry toilet downstairs for me. Result!!!

[Burgerman]

Great. Not sure about the indwelling or suprapubic, no experience. I am getting a new air matress. Alternating, and its foam filled too. So you can turn the air part off if you wish. And its 48 inches wide to suit my own bed.

This specifically. https://www.johnpreston.co.uk/dyna-form ... k-mattress

Ignore the bariatric reference, its because of the 4 foot width.

[Irving]

See my comments in blue

Well guys, I'm experiencing my first day with an indwelling urethral cath and can see it may take some time to get used to it. I'm told that blood in the urine is not unusual at first so not overly concerned about that.
Its not unusual but if it lasts more than a day or two....

What does worry me is that I'm still getting the urgent feeling of a need to pee, but have to lift myself off the wheelchair seat to empty the bladder and even then I need to contract the bladder muscles to get a flow going.
Can't comment as I'm fully paralysed, but if the catheter is correctly seated and not blocked by the balloon that keeps it in or other external reasons then it should drain all the time.

I thought that with the FlipFlow valve open, gravity would do all the work and I wouldn't even know about it. But that's not what I'm experiencing. Whether this is because of the design of the wheelchair seat pad, I don't know, although it does seem to be the same on every seat I've tried. Gravity certainly does seem to be involved but only by squashing the urethra and cath by my bulk.
Any suggestions please?
Can't say this is a problem I've experienced, unless the catheter is getting kinked or blocked internally, mine drains all the time (both with urethral and SPC).

Have to say that even after just a day, I'm wishing I had the suprapubic option. I think I'm going to push for one.
You do get less bladder infections with SPC.

Questions about SPC - with one in place, can the penis still leak involuntarily?
Not normally, though if the catheter gets blocked you can get bypassing via that route or if you have a weak or damaged sphincter. Which can happen with long term urethral catheter. I had one for 2y when my SPC failed (it took that long to get a SPC re-insertion) without damage however.

- Does a SPC ensure complete bladder draining?
Not directly when upright, but when I lie down on my side at night I typically get a 250ml drain

[greybeard]

Thank you, Irving.