Last reply 9 months ago
Let's talk about bladders :)

Hi guys, this may be a bit lengthy and I’m not the most articulated of folks, so please bare with me. I would appreciate some feedback/opinions.

My mum has Primary Progressive MS, she has very poor mobility, wobbling around the house with the use of hand rails and is wheelchair dependent outside.

Over the last few years, she’s had ongoing issues with Kidney Stones. She’s had invasive surgery a few times to blast the stones and also had several sessions of lithotripsy (soundwave blasting). She’s currently waiting for further surgery for stones on each kidney.

My mum has problems with urine stagnation, which we’re told is a common problem in folks with MS. This could well be the cause of the stones, along with having a reduced mobility.

The last few weeks, my mum has had several oopps moments as she’s been unable to get to the bathroom on time. As you can imagine, this is embarrassing and she’s getting really down about it. We’ve had the incontinence nurse over a few times, but she can’t do a proper assesment as my mum has the kidney stones. My mum is wondering if now is the time to go for a catheter. She feels she will benefit from it. However, we get the impression that this is the last resort from the incontinence nurse. We were thinking if the stones are caused by the stagnating urine and the reduced mobility, this is probably going to be a never ending circle of infections and kidney stones. The nurse is really encouraging for her to wait it out! But it’s really exhausting my mum, along with myself. She’s a battler, she’s never let her MS phase her, but this is too much for her.

Please let us know what you think, should we really push for her to have a catheter or should we trust the experts? It would be nice to hear from folks who have been in similar situations.

Thanks for your time 🙂

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10 months ago

Hello @frankyjack. I don’t have anything to offer by way of experience but I think it’s wonderful you’re there for your mum, especially tackling such a sensitive issue. From an outside perspective but from a woman with MS, I’d say your dear mum’s dignity is so important. She or you may feel that to catheterise is to give in a bit, when in actual fact, it could be just the liberating experience she needs. That’s if she want to go that route. Priority for us all, your mum, you as her big supporter should be quality of life. Whatever your mum wants should be paramount. None of the options are ideal so it’s a case of going by instinct about what your mum really wants. I hope you get advice from others who have experience of this. Hey, all the best to you x

10 months ago

Good evening @vixen. You’re certainly right by saying it will be liberating for her, she feels she is now housebound because she can’t guarantee that she can hold her bladder. She’s fiercely independent and having a catheter feels to her that it is one step backward if you know what I mean. However, she needs to think about the quality of her life. I’ll point that out to her.

Thanks very much X

10 months ago

@frankyjack , urine retention is a problem for us, MS’ers. It can give rise to urge/frequency incontinence, which doesn’t sit well with mobility problems. Retention, as you say, can also give rise to kidney problems.

Intermittent Self-Catheterisation (ISC), using “use once” disposable catheters, may provide some welcome relief and help the kidneys.

It may be worth asking the question………..

10 months ago

@stumbler, ISC’s were discussed at one point, the inco nurse said it wasn’t suitable at the moment, something about residual urine not being high enough. She must have scanned my mum post voiding on a good day, as usually, she has pretty bad retention/stagnation.

Ideally, she’d just like to have a catheter in for a few months, till the stones are resolved, then have the option of going ISC.

Thanks for commenting 🙂

10 months ago

I’m gonna get off to bed shortly, if anyone does reply, I’ll check & respond in the morning. Good night folks.

10 months ago

Mornin lad
What a good and selfless son you are, for helping your Mam !

I know being good in this life; means you sacrifice somethin yourself, but your mums pride is priceless.

And She must be very proud of you mukka!

I’ll cut to the chase, I’ve been there, got the tshirt etc- with two littleuns -?alone! No parents, morally corrupt ex etc …

I feel all that u and mum are feelin, put it that way!

It pretty much kills your quality of life!! So… we adapt armed with a bit of info and crack on?

So Mother of wonderboy Frankie. Hello. And hats off to you Chick. Your son is a diamond and you have raised a good un.

My advice to you is
1. Get ain’t TENA lady pads from incontinence nurse – they’ve come a long way and no one knows!
2. Do the isc. Having a permanent catheter is a nasty op, hurts and could give you a relapse, as well as permanent potential for infection.
3. A disposable catheter is easy – like a tapas, you get used to it. Again, no one need know. Practice makes perfect and you need to give those kidneys a rest ASAP!!
4. A build up of stuff that should be flushed out – and a painful lump of fire , which is what a kidney stone is, is no fun.
5. If you are self conscious of weeing then you will be nervous of drinking too much, which will just exacerbate it all and make you and brain feel like a shrivelled up husk!
6. Hydrate, hydrate, hydrate!!!
7. It will increase trips in the short term, but isc buys you hours.
8. Whether in dwelling or temporary, a catheter does the same job. It entirely empties the bladder.
9. I do supermarkets, shopping centres, coffees and the odd Malibu in the pub, using a catheter or Tena lady, or both
10. It’s very liberating to get your life back
11. There’s always a way of adapting. You may also be suitable for Botox, which along with
Isc, gives you the bladder of a 16 year old. If you do it right, you can get about 3 hours between trips
13. And you can drink gallons of herbal tea etc to give those kidneys a rest and a detox, because the cathater will mean you empty fully, but much larger amounts when you do. Good for cleaning your kidneys after I expect, a restricted liquid intake? 14. @mmhhpp the ledge (hope u r ok chick) has posted her experiences of a permanent catheter recently. I know I’d rather not carry a bag of wee about with me permanently? Would you? Getting to the toilet and back Is a workout anyway, and you must keep moving!
15. Betmiga calms it down as well. And desmopressin is a nasal spray that your doctor can also prescribe, it’s like temporary Botox, (but should be used sparingly.) for eg if you sleep is disturbed ie To get a good. Nights sleep, as it stops nocturnal trips to the loo.
16. A , a permanent catheter is a sledgehammer to crack a nut approach at this stage; and is too much for us sensitive Magic Souls! unless entirely necessary and unavoidable
18. And I can’t get rid of numbers -,eek apols!

Good luck to you both✨👏☘️👍☘️☮️💕🧜‍♀️✨

10 months ago

@mermaidia11 @frankyjack

Hi frankyjack,

Yes I have been through this. I asked for a suprapubic catheter in nhs but unfortunately this is the last option they will consider ( and i am permanetly on a Wheelchair!) . It took so long to get appointment that by then i had already changed my mind .

Don’t be put off by using incontinece pads, I was on tears the first time but i am really happy now . They give you so much freedom! I no longer have to worry about toilets i can be out and about you can drink tea👌😀. Tena pull ups are good i prefer iD which you can get them through ageUK . The ID belt can hold 2.6 l , no leaks my favourite.

I am permanently on Wheelchair so i opted out for medication to wee less , who cares now 😉.

Hi mermaidia11! All good?

Items Qty Price (EX. VAT)
iD Expert Belt Maxi Small (2600ml) 14 Pack
Product Code: 5700180140
3 £23.97
iD Expert Form Super (2899ml) 21 Pack
Product Code: 5310275210

10 months ago

@frankyjack – I was waiting for a woman or two to respond since they understand more than I… Thank you @mermaidia11

As a guy in his 60’s going through the challenges of PPMS, all I can say is that I have had a great life. I outlived my 1st wife who died 24 years ago – she was a Goddess. This put things in perspective for me; what I am dealing with is minor…

My friends understand that if I have “an accident” just to ignore it – they have been great in that regard. Our table in a restaurant is near the washroom; my chair is the closest. If I was in my 20’s – accidents might bother me. Yet my relationships are solid – those close to me know that physical problems occur – I am who I am…

On a side note – congratulations on being a great son. Your Mom raised you properly!

10 months ago

Good morning folks, sorry it’s taken a bit of time to reply, been a bit busy this morning. Thank you very much for your warm compliments 🙂 always nice to hear kind words.

My mum wishes to thank all of you who spent time to write, she’s taken on board all that you have said and wrote some things down to ask the inco nurse on her next visit. We’re waiting for a box of goodies from the nurse which should be full of samples, pads, undies and cleaning & skin care products and also some tablet which should slow the bladder down, I should have mentioned that last night.

Oddly enough, the hospital called this morning for her to have surgery on one of her kidneys, she’s due to go in tomorrow morning to get one of the stones removed 🙂 So that’s a step in the right direction. @mermaidia11 Thank you very much for your in-depth reply! It made my mum happy to know there are many other options out there. We’ll take full advantage of the Urology consultant tomorrow and ask his opinion too. I get a day off work too, so we’re all happy 😄

Have a nice day folks.

9 months ago

Hi @frankyjack and everyone else. I have bladder botox every 6 months and cannot recommend it strongly enough. I know it works when it’s wearing off and I’m constantly wetting myself and changing my Tena pads every half hour! Don’t have cathaterisation with wee bag strapped to your leg. Horrible!

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