Friday, 17 November 2017

Guest Post: Self-catheterisation

Note: This is a no-nonsense and detailed post on self-catheterisation.

As MS progresses we often have to self-catheterise. This presents few problems for some. Others, like me, aren’t so lucky.





When I was told I would have to self-catheterise I fell into a state of shock. I had gone to the continence clinic expecting tips on how to strengthen the muscles in my pelvic floor. Following an ultrasound bladder scan, however, catheters were mentioned and a booklet was produced with pictures showing body parts I had never heard of, like the urethra.

I was led into a side room where a thin piece of tubing was produced and asked to drop my trousers and pants, clean myself and insert the tube into my penis, pushing it up the aforementioned urethra and into the bladder. After a couple of unsuccessful attempts the catheter seemed to get stuck and the procedure was abandoned.

When the nurse finished patting my head with cooling towels I was told that perhaps I needed more time to get used to “self-cathing” as she called it. I was given a box of samples and told a community continence nurse would call.

For weeks I refused to even open the box. Then I stumbled across a bladder charity with an advice line so I phoned. It was a good call. Soon I was pouring out my woes to a person who actually used a catheter. We did a lot of talking.

I discovered that in Britain 60,000 people self-catheterise using a staggering 57.5 million catheters a year. Those who carry out what is called intermittent self-catheterisation – where you catheterise yourself once or several times daily- are a broad group ranging from those suffering neurological conditions like MS to men with prostate problems and those who have physical blockages caused by injuries such as a low flying cricket ball. The helpline adviser suggested I call the community continence nurse and ask if she would visit me at home where things might be more relaxed.
Two weeks later a community continence nurse was sitting at my kitchen table. She had brought some samples and I remember thinking it strange that a grown man had been defeated by fear of a slim and flexible tube about a foot long.

The continence nurse said my problems getting the catheter into my bladder may have been caused by having a narrowed urethra – the thin bodily conduit that carries urine from the bladder. Urethras can narrow for many reasons and the continence nurse suggested a few tips to get round my narrowing problem. With her guidance I got the catheter through the narrow spot or “stricture” and into my bladder where I promptly “voided” nearly a pint (400 ml) of urine.

I told myself that from then on I would self-catheterise daily. And that is what I have done. In the past five years I have self-catheterised thousands of times. I never thought I would say this but five years on I am now a happy cather.

by Ian Cook

Ian writes an ezine for progressive MSers: mymsprogblog.com

7 comments:

  1. Thank you for posting about this important subject Ian.

    I have to very infrequently self-catheterise and, despite thinking I knew my anatomy well, needed the continence nurse (thankfully in my home) to help me insert it for the first time.

    I had worried beforehand about whether it would hurt - it really didn't - and dealing with a filled bag. It's re-assuring to know what to do and to have the supplies at home for those occasions when my bladder muscles rebel.

    It's almost a taboo subject so I was glad that, at a coffee morning, someone asked if anyone self-catheterised. There were a couple of us who shared our experiences and that prompted several more people to ask questions.

    Thanks again for sharing your experience

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    Replies
    1. An astoundingly good guest post.
      Thanks Ian for your searing account of moving into the world of self-catheterising.
      A few of us have mentioned here before that knowledge is empowering and your description, including the relevant dynamics such as the manner you were introduced to the procedure, will assist so many others to achieve a better quality transition. If or perhaps, when I face this, I for one will be resisting being taken into a side room after being told and will look to access support and advice first and foremost.

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  2. "I am not on any DMDs but take Baclofen & Clonazepam for spasms and spasticity and I take Simvastatin as an MS treatment"

    Why? Could this be the future from Spms patients?

    Very courafge post

    Obrigado

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  3. Well done for writing about this topic!

    I have had MS for 15 years (RRMS for 10 years and SPMS for the past 5 years) and bladder management has always been one of my worst symptoms :-(

    For the past 4 years, I have had annual botox injections in my bladder and I self-catheterise 5 times daily. I have to say that I was anxious about moving to ISC, but it has LIBERATED me from the misery that I had living with severe incontinence on a day to day basis. I was working full time in the City of London and the stress that it caused me to 'manage' that burden was (with hindsight) without doubt a factor in the progression of my MS. I couldn't see it at the time as I didn't know there was anything that could be done and I thought the longer I could 'hold out' before self-catheterisation, the better. How wrong I was?! I wish I had started so much earlier.

    You get used to daily ISC very quickly. It doesn't hurt and most importantly, it helps you get your life back. I couldn't recommend it enough to people like me, who were causing themselves untold stress by living with severe urinary incontinence. I still have bad days of course, but I had such improved quality of life since I went down this route and I am so grateful!

    Onwards and upwards :-)

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  4. I have SPMS and I've been in a wheelchair for seven years so I've had problems getting to the bathroom on time. I first tried incontinence pants but they never worked effectively. ISC was mentioned but I was concerned about the pain - and after one experience when in hospital, I am still anxious. I've been using condom catheters that I can wear throughout the day and night. Only drawback with them is that the flow works them loose after a few uses. Attaching a new one is not easy with a flaccid penis but then I wonder about ISC and the same flaccidity.

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  5. I (IDSS 8.5, 9HPT 180/270) am a veteran of ISC - yet I can still remember the enormous relief I felt at the continence clinic (2005?) on finally feeling an empty bladder. There was minimal pain.

    What finally led me, five years later, to an "indwelling" urethral catheter was UTI's which were crippling. That, in turn, led to a supra pubic catheter some years later.

    I feel enormously grateful to Ian for writing, so frankly, about your difficult experience. If you read this Ian, I am so glad that I did not experience what you did.

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