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Continence issues

Hi

My name’s Em, I am a continence clinical nurse specialist working in the NHS. I would love to hear from anyone experiencing MS symptoms associated with continence (urinary or faecal).

BIO: Continence is my passion, I have been a qualified, registered nurse for over 10 years, previously working in A&E, then as a District Nurse and for the last two years as a specialist. My interest (aka passion/obsession) for continence sparked as a student nurse when I overheard a nurse saying “it’s ok love you can pee in your pad” and I thought… NO it’s not ok!

It pains me to say that many of the wonderful people I meet in my clinic have not had good experiences when trying to access help and support for continence issues. There is a still (it’s 2018!!!) a stigma associated with incontinence symptoms (I call it symptoms as incontinence is NOT an illness) in that we “don’t like to talk about it”…Well, I do like to talk about it, continence is as important as eating or drinking to me, it can affect all aspects of our everyday lives. Continence can have a profound effect on social interaction, sexuality, sleep, work, self esteem (body image) etc (to name but a few)

My other gripe about continence care is that many specialists focus on bladder issues, the amount of people I’ve assessed who have NEVER been asked about their bowel habits is shocking!

Thankfully, I have a brilliant working relationship with my local MS Clinical Nurse Specialists/consultants and they refer quickly and appropriately so that I can provide advice and support if needed. I am not here to sully or disparage your own continence service as each health board operates via different guidelines, however if I can ‘anonymously’ help one person or encourage them to seek advice or support then my job is done :slight_smile:

I would also love to learn from YOU… any hints, suggestions, advice so that I may better help my clients in the future would be gratefully received.

One thing I would love to discuss is my use of the word ‘client’ as opposed to ‘patient’. I hate using the word patient as it denotes (to me) illness, suffering…please give me your thoughts

Disclaimer: I am not a world renowned expert on continence (yet…watch this space) , I have a wicked sense of humour and might inject the odd swear word here and there (I can’t help it, I love when my clients look shocked when I say FART or FANNY). As a CNS I pride myself on giving honest and practical advice that might (in some small way) help someone.

Oh and another thing…I’ve tried ISC it doesn’t hurt it just feels oooooh :slight_smile:

Look forward to hearing from you, Em

hi em i have nothing but praise for my own continence nurse (bladder and bowel nurse now). i self catheterise twice a day, spend a fortune on pads! and have a radar key for each handbag. a good tip is to familiarise yourself with all the disabled loos in your area. mine are the wetherspoons and a real ale pub. i drink coffee in wetherspoons but canNOT go in the real ale pub without having a pint! yes, i know that stimulants like coffee and beer are not helpful but on balance they are necessary! so my advice is to offer advice on where to get pads from, get a radar key or three, and suss out where the disabled loos are. thank you and all the others working in your field. carole x

Yeah, here in Telford the MS nurse referred me to the bladder and bowel unit and they tried a coupl things - ended up with oxybutin patches.

Also big mention for MS Life - great seminar with marvellous lady last time. Got to admit I went and was amazed. Made you think, hang on, its NOT just an issue for ladies and its happening to blokes as well and ALL ages.

She actually amde us laugh as well! Can’t remeber her name…early morning brain fog!!

I suffer with continence issues and seeing a CNS in early March.

Very awkward having to keep an eye out for the local facilities or, on a drive somewhere, going “oh look toilets, better stop” as you don’t know when the next ones will be.

Also having the wife and kids have a laugh, whilst you know they are just trying to cheer you up, can be a downer.

I do find I suffer the “gravity” issue. Actually happened last night. Had been out, visited the facilities before leaving, drove home, went to get a couple of bits out of the boot of the car and suddenly had an urgent need to go. Fortunately I made it in time.

I do comment to the wife when the TV adverts come on for a certain female pad “what about us men”. And the range available at the local supermarkets for men is limited compared to women.

47 year old suffering male

Hi

When it comes to the bladder, cut down on caffeine - it goes straight through you! For bowel continence, probably the most useful titbit of information I learnt was that bowels are most active in the half hour after eating. I read that somewhere, and realised that it’s generally true for me - I’m most likely to have a number 2 after a meal. It’s helpful when thinking about day-to-day activities (for example, I wouldn’t eat breakfast and then go to work straight away, in case I have a movement en route.

And for emergencies when driving, I got something called a Bog in a Bag, which I saw first on Dragon’s Den. Basically, it’s a small foldable 3-legged stool, with a canvas seat. In the seat there’s a flap, which you can pull back to reveal a canvas bowl underneath. Then you put into that a disposable bag, to do your business in. I’ve never actually needed to use it, but it’s good to know that, should I get the urge on a long car journey, there’s a back-up available if needed. It’s easy to carry too, so could be used simply as a stool to sit on & rest your legs.

Dan

What I have discovered: If you are a male and you leak fast then probably no amount of experimentation with pad types (I’ve tried allsorts) or pullups is going to stop all leaks. Neither will wearing waterproof pants over the top unless you can also avoid sitting down or can place an absorbent layer in between (e.g. towelling pants). The most secure pads by far for bladder leaks are the taped nappy style but they are not easily concealed under ordinary trousers because they are bukier behind, which may prevent their consideration altogether. My urologist suggested more frequent ISC to reduce leaks. Pullups are a pain to change as you will have to remove trousers and even shoes to put a new one on, and this can be far from straightforward in a small grubby toilet cubicle. Pads sagging down if they saturate is a big problem, not only because they can cause an obvious bulge but can literally drop out of underwear or net pants and end up falling out of the bottom of a trouser leg. Pads being exposed above the back of the trousers especially when bending over is also a hazard; a body vest with poppered crotch will sort both problems but the flap and poppers must be widely spread, otherwise it will slip to the side and provide no support to prevent sagging. Some I have bought have had to be adapted by adding extra poppers because they were too narrowly spread. I have found a lot of problems with bowel urgency can be avoided by a pre-emptive and assisted emptying with the aid of a bulb syringe/anal douche and always going at the earliest opportunity. Also using a liner over the pad can suffice in dealing with minor leaks. Desmopressin spray may be a help with airtravel by suppressing urine production but strictly under consultation with a doc. Wearing trousers with side pockets on the thigh are quite fashionable and can be a convenient place to hide a spare pad or a wrapped wet pad in place of a handbag!

Have you used Tena Plus Pants? Tesco stock them. They’ve got an elasticated waist, and I can easily wear them under boxers without anybody being able to see or suspect anything. I also found them to be very absorbent, without leaking. But the best thing for us fellas is sheath and leg bag. It meant so much more freedom to go out, and also I could sleep straight through the night without needing to get up.

Dan

Hello all, first time poster here so forgive me if this post is in the wrong thread.Please help with advice. I have PPMS, full time wheelchair user and cathed. Last year I went to Leonard Cheshire for respite, they are brilliant. I found the first time a health care assistant had to clean my posterior region I cried in humiliation. I must say this was not because of the HCA, they were very sensitive. This emotion stemmed from me! The loss of a most basic independence and relying on a stranger was overwhelming at the time. (My husband normally does it ).My husband deserves and needs respite but I am scared to feel that personally driven humiliation again and thus resistant to go to respite. I adore my husband and I need to overcome this.Can anyone help me with how I can overcome this feeling of humiliation? thank you in advance

Yep, tried those and various similar brands including Mens Depends. Still use if I am trying to get out quickly and cant find clean net pants, but still get leaks.I don’t think a beer gut helps the elastication to grip!

It took me a while but what I find works best for me now is ID pull ups, which have only leaked on me once or twice, combined with a little pad stuck inside the pull up. This not only provides a wee bit more protection, but also, when you’re out and about and can’t get to a loo immediately and end up having a minor dribble, then when you get the chance just remove the wet pad from the still dry pull-up without the inconvenience of having to change the pull up.

The pull up / pad combination isn’t noticeable through trousers.

derek

That one word FANNY made me feel horrible all over again…I am not a prude by any means but over 40 years ago after an extremely distressing loss of my twin babies at 27 wks I was pretty unwell.

Unable to tend my own personal hygiene I was attacked ( strong word but that is how it felt ) by a nurse I had never previously seen or spoken to. She found my toilet bag, pulled out two flannels and said " which one is your fanny rag ? " in a non too quiet voice so that everyone could hear.

I was very ill very distressed and this really upset me. I have never since heard the FANNY word without getting a shiver inside.

I vowed at that time never to use any words which may cause offence or upset to others…I was myself a nurse and went back into nursing after having my family. I am now long retired but that word still triggered my feelings of upset.

The other f word I don’t like either but it does seem more widely accepted now days, though the lovely Nurse Specialist who talked to my husband about his diagnosis of bowel cancer used the phrase " hottie coughs " much less offensive to people my age.

I do have both bladder and bowel incontinence now and could say much more but

It hurt and more than 4 decades on I found it still hurt.

That should have said " bottie coughs "

Hi Emma

I’m with you on trying to be more open about continence / bowel and bladder issues.

After having been embarrassed to talk about problems for years, especially with regard to what has been very long standing bowel problems (constipation rather than incontinence), I’ve been making a conscious effort to talk about all my own issues. Which include ISC about 6 times a day (after trying an SPC and not getting on with it), and having had a colostomy last year.

But as the poster above mentioned, some words do have very poor connotations with individuals. Either they bring back trauma from the past, or they are just words with which someone has a problem with. Personally, I tend to be quite broad minded with my language, but I’m reasonably careful on the main website to use fairly innocuous words.

Sue

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