I’m a born, bred and buttered Bristolian. I love the city of my birth and invest my time in it as a volunteer tour guide. If you wish to learn about our city’s world icon, the Clifton Suspension Bridge, then I can take you on a tour. And I know Clifton, the suburb John Betjeman described as the ‘handsomest suburb of Europe’, its facades studded with commemorative plaques honouring notable past residents. During lockdown, I devised three Clifton walks, each one themed on about twenty plaques.

So, as a reasonably fit 74-year-old (BMI = 27), I kept myself busy and was fulfilled. I was slightly perplexed at gaining weight last year and had to buy shirts in a larger size but assumed it was the effect of my metabolism slowing as I aged.

Retention

Then, last August I had a sudden painful blockage. Dialled 111 and was granted access to my GP. He scanned my tummy and diagnosed urinary retention. He referred me to the nearby 900-bed super hospital. A catheter was fitted, and 1.75 litres drained from my bladder. My tummy subsided and I felt less bloated but was intensely aware of this valve protruding from my penis. It just seemed unreal and somewhat alien. A nurse described my situation to me, handed me a supply of day and night bags along with a catheter passport containing basic details of my condition, and sent me home.

So, in the space of a few hours my life had changed. But no, it hadn’t. Admittedly, it was tedious connecting a night bag to the day bag and having restricted movement in bed, but surely, I could continue daytime life as usual? I sought to do just that and continued with the suspension bridge tours, even taking participants into the ‘belly of the beast’ – the vaulted chambers beneath one of the towers. It required descending a vertical ladder and negotiating narrow shafts between vaults. I could handle all these obstacles, and they provided a welcome diversion for me. In contrast, I found that much of my time at home was devoted to pondering on my condition.

Disconnection

But I experienced discomfort. And the bag tube sometimes became disconnected from the valve and there was leakage. I could cope with wetting myself at home, but I was determined to lead a completely normal existence in the wider world. I phoned the hospital’s urology department and explained that I needed to get to Cardiff for a meeting and was at risk of wetting myself. Could I drop by for some tuition on rigging my plumbing system? They granted me priority and a nurse showed me how to ‘wear’ the leg bag, secure the catheter valve with tape and arrange a broad strap around my thigh to keep everything in place. It worked. The Cardiff meeting involved lots of walking around to assess a building and throughout, I was able to function fully.

As for the Clifton plaques walks, I realised that my leg bag would be quite full and would start to form a visible bulb shape on my calf. The remedy was to limit the walk to two hours’ maximum and then head straight for home. I considered the van driver’s solution of an empty lemonade bottle stowed in my car but thought better of it. And in the event, it wouldn’t have been necessary.

A tubular support bandage on my thigh was invaluable. It held the tube in place midway. And it ensured that any movement above or below the bandage was not transferred.

D-I-Y Catheterisation 

I was approached about self-catheterisation, and I found it difficult to understand the need for it. I have been prescribed tamsulosin for 15 years and for all that time I have urinated very, very regularly. Why would I need to manually drain my bladder – it was perfectly able to do it for me on an all-too-regular basis? And the actual procedure sounded really invasive, requiring a sanitised environment. Perhaps I ought to have investigated it further, but as the weeks went on, there was increasing sensitivity at the end of my penis where the tube emerged. Also, bladder spasms caused voiding where urine was discharged via my penis as well as the tube. I experienced painful stinging when this occurred. All this reinforced my reluctance to explore the self-catheterisation route.

For general comfort, a good solution was to cut a little square of towel material and position it around my penis to act as an absorbent cushion. If I had a bladder spasm it would soak up the discharge. The ideal material for this is a super absorbent dish cloth. Just cut it to a hanky size, fold it over and tuck it into your underpants.

By December I was experiencing regular blockages of my catheter and had three procedures at the hospital in which a syringe filled with saline solution was used to clear the blockage. Then I was given my own supply of syringes and performed the procedure at home until this Dynorod-style method was no longer effective and the catheter had to be replaced.

Resection

By now I was keen to discuss the way forward. I booked an appointment with a consultant and he advised me that my large, 1,000ml prostate presented a challenge to operate on with a transurethral resection procedure (TURP). But he’d tackled larger than mine and offered to perform the operation. It would not be a 45-minute, in-and-out in a day procedure, but a two-and-a-half hour one, requiring a three-day stay.

In January, I found myself under general anaesthetic and at the mercy of the surgeon’s resectoscope. Since then, I am catheter-free, have experienced no pain and I have the bladder flow of a teenager. So, the future is looking rosy – or I should say straw-coloured, as that is now the colour of my urine, which is as it should be?

A comment by the surgeon at the initial consultation resonates. I described my various volunteering activities in order to underline my strong need to regain my normal life. He thought I showed stoicism to stay active despite the restrictions which a catheter imposed. His patients were often dismayed at the state they found themselves in. For them, their situation meant a major lifestyle change.

Self-realisation 

I have written this account of my ‘journey’ – a personal case study – in the hope that it will be instructive to others. I wish that I had read an account like it back in August.

Some closing thoughts: is there a need for more dialogue among men about catheters? A lively cross-pollination of ideas and practical advice about this sudden situation that we find ourselves in?

Was I my own worst enemy: did I overdo things and create problems with my catheter by being overactive during my twenty-one weeks with external plumbing?

Is there a ‘standard’ routine for life with a catheter which we can measure ourselves against? Or is each patient unique?

Let the discussion begin!

Gordon Young

Get in touch with us

Bladder & Bowel UK have information about a wide range of bladder and bowel conditions for children and for adults on our website. For free confidential advice and support please contact our helpline via the webform or on phone number 0161 214 4591.

The post Living a life, despite having a catheter: a personal story appeared first on Bladder & Bowel UK.

I was born at 36 weeks, weighing 3lb 15oz, unable to walk until I was 2 years old. This was due to how small I was at birth. At a young age (around 3 years old) people used to comment that I smelt of urine. I was a bedwetter, which is something that still happens.

All through juniors’ school I became conscious that I smelt of urine, and this became worse when I went to secondary school. I never told anyone, but I would steal sanitary towels from my mum when my own stock ran out.

I used to make sure I sat on a chair whenever I could during school assemblies, I had knee problems but I played on this so I didn’t have to sit cross legged, and also I couldn’t bear the thought of getting changed for PE (Physical Education) or doing sport which made leaking worse.

Talking to someone about incontinence

I waited until I was 18 years old to finally tell someone about my incontinence. It was my auntie. She was and still is unbelievably supportive. She advised me to seek medical attention as soon as I could.

Soon afterwards, I was sent to hospital to see a consultant and have tests done. The tests they did at the time didn’t show anything. I had recently started smoking and would often have the odd cup of tea a day, which the consultant put down as the reasons I had been incontinent. I was distraught! It took so much for me to see someone about this.

A few years later, I went to see a different hospital and had other tests done. They couldn’t find any reason why I was like this. So, I gave up.

In 2015 (age 25) I moved to a different area of the country, to live with my husband. We joined an amazing doctor’s surgery. My GP is remarkable and truly wants the best treatment for his patients.

In 2018, my GP referred me to a brilliant bladder specialist, who said she would do whatever it takes to find out the reason I have been incontinent for all these years. I cried and we hugged.

I went for urodynamics tests, had urine flow tests. I was then sent for a CT scan. During the CT scan they said they couldn’t find my right ureter. After more tests they found that my bladder could hold 2000ml of urine and retain 1500ml of that. The reason they couldn’t find my right ureter was because my bladder is so large (3x the normal adult size). It was hiding underneath. After 10 years, I finally had an answer.

Being Introduced to Self-Catheterisation

I was sent to a specialist hospital that deals with catheters; I was told I needed to self-catheterise 3 times a day. Unfortunately, I have Facet Joint Disease in my lower spine which makes self-catheterising very difficult.

On Thursday 14th May, after experiencing bouts of completely wetting myself and bad kidney pain, I was fitted with an indwelling catheter. It’s been a strange few days, experiencing pain, and I’ve had to call the district nurses out to check on a few things, but I’m getting there. I may have some lasting damage to my kidneys because of time it took for diagnosis, so I’m waiting to have bloods done.

I’ve been extremely unwell since having my catheter fitted and it seems as though it may well have saved my life having it put in. I’ve been in and out of hospital with a rare condition called diabetes insipidus which they believe I have only by seeing my catheter and how much urine output I have. I may need to have a suprapubic one fitted.

I beg anyone who is going through a bladder problem to speak to someone: a friend, family member, medical experts. You really don’t have to be alone, and it is more common than you realise.

Share Your Story With Bladder & Bowel UK.

If you would like to share a story about your bladder and/or bowel condition to feature on Bladder & Bowel UK’s blog then please do get in touch via email: bbuk@disabledliving.co.uk

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There are a number of contributory factors that result in wetting the bed. We now know that around one out of every three children who wet the bed have a problem with their bladder. It is therefore important for all children with a bedwetting problem to have a comprehensive assessment to find out if there is an underlying bladder problem. If there is, this can be treated.

Other main contributory factors include making too much urine during sleep and an inability to wake up to bladder signals indicating the need to wee. We are also aware that underlying constipation and fluid intake can have an impact on the bedwetting as well.

What sort of bladder problems could children have?

Most children’s bladders mature by the time they are 5 years old. By this age, we would expect them to go for a wee between 4-7 times per day. A mature bladder is one that stays relaxed as it is filling (so we only get the feeling we need to wee when it becomes full). It can hold on to the wee until we find a suitable place to empty it. From 5 years old we would expect children to be able to ‘hold on’ when they first feel the need for a wee and get to the toilet on time without getting damp or wet on the way. When they got to the toilet, they should be able to do a full wee and empty their bladder completely.

For some children this does not happen. Their bladder never relaxes while being filled. This is sometimes called a ‘twitchy’ or ‘overactive’ bladder. This results in the child frequently feeling that they need to wee. In some cases, they will have a wetting accident when their bladder suddenly decides it wants to empty, even when it is not full. These children often get little warning that they need to wee and will often have to make frequent dashes to the toilet. This is sometimes termed ‘frequency’ and ‘urgency’.

To stay dry at night, the bladder must be big enough to hold on to wee for 8-10 hours or more. A small bladder can obviously affect the child’s ability to stay dry. Having a small bladder may be because the bladder is not fully mature, but most commonly it is as a result of the child not drinking enough water-based drinks in the day.

A very small number of children may have a problem with not emptying their bladder completely at each wee. This can be as a result of several issues, but the risk is that any wee left behind might become infected. The infected wee often causes the child to want to use the toilet frequently and the wee can become ‘smelly’.

How will I know if my child has a bladder problem?

If your child is over the age of 5 years and keeps dashing to the toilet or has wetting accidents, then it could be a sign of having a bladder problem. Some parents may not consider the odd pair of wet or damp pants during the day to be a problem. They may think their child is ‘lazy’ because they always seem to wait until the last minute to go to the toilet. Other parents may think their child’s wetting problem is because they haven’t toilet trained them properly. Some are too embarrassed to ask for help.

We can check how much a child’s bladder is holding by measuring how much they wee when the go to the toilet. Children are able to hold on to more wee as they get older. To find out how much wee (in ml) your child’s bladder should be able to hold, add 1 to their age in years and then times this by 30 (age in years +1 x 30). For example, if your child is 5 years old 5 +1 = 6, 6 x 30 = 180. Therefore, their bladder should hold 180ml.

Your child may have a problem with their bladder if they are experiencing any of the following problems:

• is weeing less than 4 times or more than 7 times per day
• has some frequency and urgency
• their bladder is holding less than it should be for their age
• they are getting wet or damp during the day

If this is the case, your child may need an assessment and could need subsequent treatment for the problem.

What bladder treatment would my child need?

All children who have a daytime bladder problem should have a management programme that involves:

• regular water-based drinks
• regular toilet visits

You will be told how often they need these by the nurse, but it’s usually around every 2 hours.

How to teach a child to sit on the toilet

Children should also be shown how to sit on the toilet properly. They should have their feet flat (on a step if necessary) and their knees positioned higher than their hips. This allows the pelvic floor to relax and helps the bladder to empty completely. Programmes are individualised to the child and some children may need some medication to control the frequency and urgency and help their bladder relax.

Where can I find further information?

The Bladder & Bowel UK website has a range of downloadable resources for both families and professionals, as well as links to helpful videos. https://www.bbuk.org.uk/children-young-people/children-resources/

The booklet ‘Talk about daytime bladder problems’ can be found at the link below

https://www.bbuk.org.uk/wp-content/uploads/2018/12/Talk-about-Day-Time-Bladder-Problems.pdf

There is information about bedwetting at: https://stopbedwetting.org

For further advice and information, do not hesitate to contact Bladder & Bowel UK via the confidential helpline, 0161 214 4591 or via email: bbuk@disbabledliving.co.uk

This post was written by June Rogers, Children’s Specialist Nurse at Bladder & Bowel UK. 

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