LIVING LIFE WITH URINARY INCONTINENCE

HEALTH, INSPIRING

Thank you so much to Jo Williams for this incredibly honest list about a subject which, unfortunately, is rarely spoken of. Jo was paralysed after suffering a spinal stroke and here she explains what she’s learned from four years of living with urinary incontinence.

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Urinary incontinence is the lack of voluntary control over your bladder function.
When you hear the word incontinence who springs to mind? Old people, babies and toddlers, mothers to be and new mothers, the David Walliams character in Little Britain who used to wee buckets all over the supermarket floor?!
You may have noticed the TV adverts striving to normalise incontinence and show that it can happen to anyone, regardless of age.
But which sort of incontinence are these adverts referring to?
According to the NHS website, there are 4 different types:
1) stress incontinence – when urine leaks out when the bladder is under pressure eg when you cough or laugh
2) urge incontinence – when urine leaks out when you feel a sudden, intense urge to pass urine
3) overflow incontinence – when you’re unable to fully empty your bladder which causes frequent leaking
4) total incontinence – when your bladder can’t store any urine at all, which causes you to pass urine constantly or have frequent leaking
There is however at least one other type, which is what I and my fellow spinal cord injured people have…
It’s called neurogenic bladder and it means the complete loss of bladder control and sensation because a spinal cord injury interrupts communication between the nerves in the spinal cord that control bladder (and bowel) function and the brain, as well as preventing the ‘urge’ sensation generated in the bladder (and bowel) from going back up to the brain, telling you that you need to ‘go’.
I have had a neurogenic bladder (and bowel) since I was paralysed by a spinal stroke in April 2018, although I didn’t realise it immediately.
Prior to that I had wet myself just the once as an adult, when very drunk, in a long nightclub queue for the loo when at Uni, so I don’t think that really counts!
My mum tells me that I pretty much potty trained myself overnight as a toddler after watching the bigger girls weeing on a potty at playgroup.
The reason I didn’t immediately realise that my bladder and bowel were paralysed as well as all the muscles below my belly button (T10) is because I passed out immediately after I had the spinal stroke.
And while I was unconscious the medical team put an indwelling catheter into my urethra, so I wasn’t aware of it going in.
Plus, I was too ill to notice it after I came round.
It took nearly two weeks after the spinal stroke for the doctors to work out that the pressure of the Cerebrospinal fluid (CSF) in my head was sky high.

After recovering from two brain surgeries to fit and then refit a VP shunt from a ventricle in my brain to drain excess CSF into my peritoneal cavity (abdomen) I was with it enough to listen to the spinal nurse explain what had happened to my bladder and bowel.
When she first told me they were also paralysed, my first reaction was ‘what are you talking about?!’
From speaking to other spinal cord injured people, it seems our reactions were all pretty similar – disbelief, shock and horror.
I think this is because incontinence is invisible.
You can see the wheelchair, but you can’t see the incontinence.
Looking back, the only thing I previously considered about disabled toilets was that they needed to fit a wheelchair in them.
I had zero knowledge of how paralysed people go to the toilet, or that it is different from how I had always done it.
It came as a surprise to my parents of three healthy daughters too, so they were not equipped to have taught me the reality as a child.
I think most people don’t know either, which is why I’m writing this.
I’d had indwelling catheters in before as they are standard after operations.
When I had one after corrective surgery for scoliosis (curvature of the spine) at 15, my sisters giggled as they watched the urine bag hooked to my bed fill up.
That indwelling catheter was removed and I had 17 years of healthy toilet habits, sport, university, career, marriage, first home etc.
In the early days after spinal cord injury, the medical staff let you think there is some hope of recovery.
There is no cure for spinal cord injury, although some lucky people do regain some movement (and bladder/bowel control and sensation), but the death of hope too suddenly is deemed too harsh.
In hindsight I don’t disagree.
Hope is vital in all things and acceptance doesn’t need to be rushed as long as you get there eventually.
To this end, the nurses changed the free-flowing indwelling catheter to a flip-flow catheter for ‘bladder training’
This means that there is a valve which is closed most of the time and then opened every 4 hours so that you can ‘pee’.
The idea is that it helps the bladder keep its capacity.
Because I’d also had some nerve damage to my hands and arms, I couldn’t operate the flip-flow valve by myself to start with.
I had to get the nurses to do it.
On one occasion it wasn’t done on schedule and my abdomen bloated alarmingly and was excruciatingly painful.
When the flip-flow valve was eventually opened 2 litres of urine came out!
Normal bladder capacity is 550-750ml, so no wonder it was so agonising!
Once I was making it out of the hospital to the park in the hospital wheelchair I realised how hard it is to dress to hide a catheter bag.
I was certain I didn’t want one attached to me long term.

When my hand function had started to improve I was introduced to self-intermittent catheterisation (SIC).
As the name suggests, you catheterise yourself intermittently.
The first step was that they removed the flip-flow catheter and positioned me over the toilet 4 hours after the catheter had last been opened to see if anything would happen.
I had no idea what to expect.
But I guess it makes sense that when the bladder is relaxed it is shut, and that it requires engaged muscles to expel urine in the ‘normal’ way, rather than the other way round.
I sat there for half an hour or so.
Thinking about ‘pushing’ muscles that no longer worked.
Needless to say, nothing happened.
When the bladder nurse first showed me how to do SIC I was horrified!
Other than at the age of 12/13 when I started my periods and was trying to negotiate tampons, I’d never spent much time looking ‘down there’ with a mirror.
For the demo the bladder nurse got me lying on the bed, legs akimbo, mirror between them.
She parted both sets of lips.
Both sets! Why do there have to be two?
Why does the entrance to the female urethra have to be so deep?
Why does it have to look so ‘internal’ down there?
“I bet this is a lot easier for men”, I said.
“Well yes” she replied.
While my right hand was recovered enough to hold this catheter and insert it into the urethra, the more damaged fingers on my left hand didn’t have the strength or coordination to part both sets of lips so that I could actually see the little entry hole to the urethra.
So, every 4 hours I asked a nurse to do it for me.
To start with I wouldn’t even watch, I was so grossed out.
Gradually I started to engage with the process a bit more.
I came up with a deal with the nurses – they held the lips apart and I inserted the catheter with my right hand.
Very gradually with Occupational Therapy and time, my left hand improved.
And I started doing the whole process independently.
In bed.
Which meant going back to bed every 4 hours.
At that point, in spinal rehab, I still had to get a nurse to help me transfer from wheelchair to bed.
This also meant I couldn’t leave the spinal unit for more than 4 hours at a time which was a bit restrictive for day trips.
Being able to self-catheterise in my chair was the next goal.

A couple of nurses would come to the bathroom with me.
Getting trousers and underwear down over a paralysed lower body while seated, with terrible sitting balance is not easy and was the first step to master.
Next, I brought my bum forward to the front of the wheelchair seat, so I could lean back with knees out, pelvis tilted and urethra accessible.
Strap mirror to left thigh so I can see what I’m doing.
Baby wipes to thoroughly clean hands and ‘down there’.
Lips (both sets) apart with left hand, catheter in with right hand.
Wait until the bag fills up with urine.
Remove catheter.
Put clothes back on.
Wash hands.
Little by little I was able to do this by myself.
Little by little I got quicker at doing it.
It’s second nature now.
It’s amazing what we humans can get used to.
I have good bladder capacity and I’m lucky that I have a flaccid rather than reflexive bladder meaning that in theory it shouldn’t open until I insert a catheter.
But…
This doesn’t always work.
The inevitable bladder infections (however hygienic you are, pushing a catheter into the urethra 5 times a day introduces bugs into the bladder) often result in my bladder voiding on its own accord.
Sometimes this happens as little as 30 mins after doing a catheter, which is pretty irritating.
Sometimes it happens just as I’m about to do a catheter.
I can tell you that watching yourself wee all over your seat, feet and the floor and not being able to do a thing about it is pretty soul destroying.
It’s not just a leak, it’s a void.
So, it makes a mess.
And because it usually happens when I have an infection, it smells awful.
Because I can’t push, it doesn’t totally empty, so I need to do a catheter afterwards anyway.
I call it a void or my bladder ‘going’ rather than wetting myself because I know it’s not my fault as I can’t control or feel it coming.
And I don’t see the point in unnecessary self-flagellation.
On the worst day it can ‘go’ 3 or more times.
It was especially bad during the third trimester of my pregnancy.
I worry about all the plastic catheters I use.
I have done a focus group with a catheter company trying to reduce the environmental impact of their catheters.
I hope the new low plastic designs come to market soon.
This is hard to admit, but I wear an adult nappy to bed which is deeply unsexy, but not quite as bad as my husband having to help me change wet sheets.
My bladder can also behave itself for weeks on end.
So, in answer to the question, ‘when did you last wet yourself as an adult’, my answer at the time of writing is not for a few weeks, but my period is due, and that tends to bring on an infection and bladder voiding, despite my very best efforts on the hygiene front.
In the quest to find a cure for spinal cord injury, I hope they dedicate lots of resources to incontinence, as on a bad day it’s far worse than not walking.

** Jo now works for accessible bathroom specialists Fine & Able fineandable.co.uk and Motionspot motionspot.co.uk who design bathrooms to make life a little better for people with a whole range of disabilities as well as those entering later life.

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HELPFUL RESOURCES:

Brain & Spine Foundation – Spinal Strokes: brainandspine.org.uk

NHS – Urinary Incontinence: nhs.uk

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FANCY SOME MORE?

– Read Make It The Best Thing That Has Ever Happened To You by Susie whose upbeat list explains what happened when she woke up paralysed after emergency surgery on her spine.

– Read Living Life On Wheels by Belle Moult who speaks candidly about catheters being a part of her daily life and how she has dealt with her challenging journey.

– Read Sally Darby’s list Life As A Disabled Mother as she describes parenting with a disability alongside the already frustrating and challenging job of motherhood.

– Listen to Ben Tansley on the topic of Disability and what the word means to him after being told it was unlikely he would ever walk again.

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OR HOW ABOUT WRITING A LIST?

Find submission guidelines here. All writers and topics are welcome.

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** ‘But why don’t I feel happy all the time?’ ‘But why do people die and are they just sleeping?’ and “But why do adults drink beer and what does it do?’ are some of the tricky questions I tackle in my debut book BUT WHY? which is available to order now and also on audiobook.**

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1 Comment

Reply Clare February 11, 2022 at 7:53 am

Thanks you for your honesty and sharing your story. This was something I was completely unaware of, I now feel better educated but also aware that there is so much more I/we don’t understand about the lives and challenges of those around us.

LIVING LIFE WITH URINARY INCONTINENCE

Thank you so much to Jo Williams for this incredibly honest list about a subject which, unfortunately, is rarely spoken of. Jo was paralysed after suffering a spinal stroke and here she explains what she’s learned from four years of living with urinary incontinence.

———————————————————————–

Urinary incontinence is the lack of voluntary control over your bladder function.

When you hear the word incontinence who springs to mind? Old people, babies and toddlers, mothers to be and new mothers, the David Walliams character in Little Britain who used to wee buckets all over the supermarket floor?!

You may have noticed the TV adverts striving to normalise incontinence and show that it can happen to anyone, regardless of age.

But which sort of incontinence are these adverts referring to?

According to the NHS website, there are 4 different types:

1) stress incontinence – when urine leaks out when the bladder is under pressure eg when you cough or laugh

2) urge incontinence – when urine leaks out when you feel a sudden, intense urge to pass urine

3) overflow incontinence – when you’re unable to fully empty your bladder which causes frequent leaking

4) total incontinence – when your bladder can’t store any urine at all, which causes you to pass urine constantly or have frequent leaking

There is however at least one other type, which is what I and my fellow spinal cord injured people have…

I have had a neurogenic bladder (and bowel) since I was paralysed by a spinal stroke in April 2018, although I didn’t realise it immediately.

Prior to that I had wet myself just the once as an adult, when very drunk, in a long nightclub queue for the loo when at Uni, so I don’t think that really counts!

My mum tells me that I pretty much potty trained myself overnight as a toddler after watching the bigger girls weeing on a potty at playgroup.

The reason I didn’t immediately realise that my bladder and bowel were paralysed as well as all the muscles below my belly button (T10) is because I passed out immediately after I had the spinal stroke.

And while I was unconscious the medical team put an indwelling catheter into my urethra, so I wasn’t aware of it going in.

Plus, I was too ill to notice it after I came round.

It took nearly two weeks after the spinal stroke for the doctors to work out that the pressure of the Cerebrospinal fluid (CSF) in my head was sky high.

After recovering from two brain surgeries to fit and then refit a VP shunt from a ventricle in my brain to drain excess CSF into my peritoneal cavity (abdomen) I was with it enough to listen to the spinal nurse explain what had happened to my bladder and bowel.

When she first told me they were also paralysed, my first reaction was ‘what are you talking about?!’

From speaking to other spinal cord injured people, it seems our reactions were all pretty similar – disbelief, shock and horror.

I think this is because incontinence is invisible.

You can see the wheelchair, but you can’t see the incontinence.

Looking back, the only thing I previously considered about disabled toilets was that they needed to fit a wheelchair in them.

I had zero knowledge of how paralysed people go to the toilet, or that it is different from how I had always done it.

It came as a surprise to my parents of three healthy daughters too, so they were not equipped to have taught me the reality as a child.

I think most people don’t know either, which is why I’m writing this.

I’d had indwelling catheters in before as they are standard after operations.

When I had one after corrective surgery for scoliosis (curvature of the spine) at 15, my sisters giggled as they watched the urine bag hooked to my bed fill up.

That indwelling catheter was removed and I had 17 years of healthy toilet habits, sport, university, career, marriage, first home etc.

In the early days after spinal cord injury, the medical staff let you think there is some hope of recovery.

There is no cure for spinal cord injury, although some lucky people do regain some movement (and bladder/bowel control and sensation), but the death of hope too suddenly is deemed too harsh.

In hindsight I don’t disagree.

Hope is vital in all things and acceptance doesn’t need to be rushed as long as you get there eventually.

To this end, the nurses changed the free-flowing indwelling catheter to a flip-flow catheter for ‘bladder training’

This means that there is a valve which is closed most of the time and then opened every 4 hours so that you can ‘pee’.

The idea is that it helps the bladder keep its capacity.

Because I’d also had some nerve damage to my hands and arms, I couldn’t operate the flip-flow valve by myself to start with.

I had to get the nurses to do it.

On one occasion it wasn’t done on schedule and my abdomen bloated alarmingly and was excruciatingly painful.

When the flip-flow valve was eventually opened 2 litres of urine came out!

Normal bladder capacity is 550-750ml, so no wonder it was so agonising!

Once I was making it out of the hospital to the park in the hospital wheelchair I realised how hard it is to dress to hide a catheter bag.

I was certain I didn’t want one attached to me long term.

When my hand function had started to improve I was introduced to self-intermittent catheterisation (SIC).

As the name suggests, you catheterise yourself intermittently.

The first step was that they removed the flip-flow catheter and positioned me over the toilet 4 hours after the catheter had last been opened to see if anything would happen.

I had no idea what to expect.

But I guess it makes sense that when the bladder is relaxed it is shut, and that it requires engaged muscles to expel urine in the ‘normal’ way, rather than the other way round.

I sat there for half an hour or so.

Thinking about ‘pushing’ muscles that no longer worked.

Needless to say, nothing happened.

When the bladder nurse first showed me how to do SIC I was horrified!

Other than at the age of 12/13 when I started my periods and was trying to negotiate tampons, I’d never spent much time looking ‘down there’ with a mirror.

For the demo the bladder nurse got me lying on the bed, legs akimbo, mirror between them.

She parted both sets of lips.

Both sets! Why do there have to be two?

Why does the entrance to the female urethra have to be so deep?

Why does it have to look so ‘internal’ down there?

“I bet this is a lot easier for men”, I said.

“Well yes” she replied.

While my right hand was recovered enough to hold this catheter and insert it into the urethra, the more damaged fingers on my left hand didn’t have the strength or coordination to part both sets of lips so that I could actually see the little entry hole to the urethra.

So, every 4 hours I asked a nurse to do it for me.

To start with I wouldn’t even watch, I was so grossed out.

Gradually I started to engage with the process a bit more.

I came up with a deal with the nurses – they held the lips apart and I inserted the catheter with my right hand.

Very gradually with Occupational Therapy and time, my left hand improved.

And I started doing the whole process independently.

In bed.

Which meant going back to bed every 4 hours.

At that point, in spinal rehab, I still had to get a nurse to help me transfer from wheelchair to bed.

This also meant I couldn’t leave the spinal unit for more than 4 hours at a time which was a bit restrictive for day trips.

Being able to self-catheterise in my chair was the next goal.

A couple of nurses would come to the bathroom with me.

Getting trousers and underwear down over a paralysed lower body while seated, with terrible sitting balance is not easy and was the first step to master.

Next, I brought my bum forward to the front of the wheelchair seat, so I could lean back with knees out, pelvis tilted and urethra accessible.

Strap mirror to left thigh so I can see what I’m doing.

Baby wipes to thoroughly clean hands and ‘down there’.