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Living a life, despite having a catheter: a personal story

In this guest blog, Gordon Young recounts his memories of using a catheter in day to day life and highlights key issues men often face with these difficulties. 

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.

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