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After many years of bladder issues, Mark Webb was diagnosed with Multiple Sclerosis (MS). Read his thoughts about intermittent self-catheterisation (ISC), and how it helped him embrace his life and gain independence.
Mark Webb is 53-year-old public relations executive and public speaker who lives in the UK. He describes himself as a keen but mediocre wheelchair rugby player, a devoted husband, and a proud dad of two children. He also has Multiple Sclerosis (MS). Mark spoke to Hollister to share his experience of intermittent self-catheterisation (ISC) and the things he wishes he’d known from the beginning of his (he hates this word) journey.
I pushed against the idea of using a catheter; but once I finally did it, it was fine!
Like most people, I thought catheterisation sounded pretty unpleasant. Even though I’d been living with bladder dysfunction since before my MS diagnosis in 2007 – pretending I’d spilled a drink on myself, rushing to the loo, running back to my desk to sit down after an accident, wearing black trousers – it took a couple of years and various unfocused treatments before my wonderful MS nurse put me in touch with the local National Health Service (NHS) continence clinic. Two clinic trips and one eye-opening home visit later, I had inserted my own intermittent catheter. And after the fourth or fifth go, it was not an issue for me.
Trust the science and take advice
As is typical for those with MS, my bladder issues were getting worse. I experienced increasing urgency, some loss of bladder control, and more frequent bedwetting. MS medication often brings deep sleep which, along with bladder dysfunction, can mean waking up wet and cold.
At the continence clinic, they took all kinds of “wee” metrics like checking my urine flow rates and using ultrasound to monitor how much urine was emptying from my bladder. MS bladder issues are sometimes about loss of control and sometimes about retention. In my case around 150ml of urine stayed put in my bladder after I urinated, which makes infection much more likely – and we all know urinary tract infections (UTIs) are to be avoided if possible. Catheterisation was going to be the solution to my problems.
The first time I self-catheterised
Having booked a home visit, I read all the information about ISC ahead of time and got myself ready in our ensuite bathroom. I was armed with hygienic wipes and a mirror – not realising that it’s actually women who need a mirror to locate the opening to their urethra, while most men are able to see the top of their own penis. It was a bit unnerving to look at the catheter samples they had given me; they seemed like incredibly long snakes. How exactly was that going to work?
Then the continence nurse arrived and talked me through the ISC process. She was great, the manual was easy to read, and it all made sense to me. Somehow though, I found it psychologically very difficult to be put something up and into my penis. It might not even be painful, but it felt so unnatural to do that. And again, the catheter looked incredibly long; it’s hard to believe the bladder is so far away! I sat myself on the loo, trousers down, and took a deep breath.
I had the catheter in one hand, my penis in the other, and I’m not ashamed to say that I was in a bit of a panic by then. I took the tip of the catheter and tried to feed it into the tiny hole. I couldn’t believe I was actually going to do this. I got so overwhelmed that I thought I might pass out, and the nurse told me later that she almost told me to stop. But little by little I pushed the tube gently into my urethra, further, and further…until suddenly it arrived at my bladder. The wee came out and the feeling of relief – physically and mentally – was unbelievable. Just unbelievable. And once I’d done the process four or five times, ISC felt completely normal for me.
The relief is huge – who needs sex when you can have an empty bladder?
I can’t tell you how good it feels when your bladder is properly emptied. I’m laughing now too, but it’s true!
Finding the intermittent catheter that works for you
There are different types of catheters, so I’d say it’s important to try a few and see what works best for you. Even though there are 2.8 million people with MS around the world, all of our symptoms, mobility issues, and bodies are unique – so explore the options and find the one that suits you and your lifestyle.
For me, dexterity is my biggest issue (one hand is better than the other) so it came down to which catheter was easiest to open and grip. Some catheters have different tips, some have lubricant, some are rigid, and others much more flexible. There are even more compact travel versions. I settled quite quickly on the one that suited me best and stuck with it. It just works for me. Now, I always carry all my ISC supplies in a backpack, including my catheters, wipes, and hand sanitiser. As long as I can find a large clean loo, I'm ready to go.
I can’t make myself a cup of coffee, but I can pee by myself
Because my dexterity’s not great, I try to avoid boiling liquids and usually let other people make hot drinks for me, but ISC is one of the things I can easily do for myself. So far, no one else has had to catheterise me and that feels good. I want to accept that I have MS, to live with it, to not fight against it all the time, and tools like intermittent catheters are a great way to keep some independence. They’re quick, hygienic, and help make my life more dignified and more normal.
ISC can help take away fears about MS – and re-open your world
I remember how hard it is in those first months after your MS diagnosis, when everything is overwhelming and all you can think about is the possibility of health decline and wheelchairs. That’s where Dr. Google can take you, and mobility can seem to be the focus of every conversation you have with your neurologist.
But why obsess about one day in the future when you might need to use a wheelchair, when getting your bladder issues sorted out will positively impact you every day? Until you have control of them, bladder problems seem awful and embarrassing – and this just adds to your anxiety and keeps you indoors. Living with MS requires constant planning and thinking ahead, but embracing things like ISC can take away some of those fears – as well as give you wonderful physical relief! Catheters can open up a world that you thought had been slowly closing down.
The things I wish I’d done sooner
I wish I’d sought medical advice sooner when I experienced my various random symptoms. And I wish I’d confronted my early bladder dysfunction, instead of just ignoring it. I remember thinking, “Ah, it’s some kind of secret that no-one talks about; it must happen to everyone, so I won’t say anything and I’ll just live with the little accidents.” I didn’t even feel I had an excuse for my incontinence – like a woman might after childbirth – and I was just so embarrassed. Later in my MS journey, I wish I’d moved from a stick to a walker sooner; that would have prevented a lot of falls. I also wish I’d known about intermittent catheters sooner. So, I’d say learn from my experiences and make your life easier. The relief you feel after you’ve struggled is absolutely immense.
My best advice?
Talk to other people with MS and listen to the experts! The “best practice” stuff is so important. It’s easy to think you should drink less to wee less, but don’t do that – it’s vital to keep hydrated to stay healthy.
But most of all embrace life. It’s not over…it might be different, but life is still there to be lived. Whose life ever goes according to plan? A diagnosis with MS doesn’t mean giving up on your ambitions, just rethinking how to achieve them. Who’d have thought I’d be playing a contact sport at 53? And having such a fulfilling professional life? Even with MS there are parts of your life that you can take control of, and ISC can help you do just that.
Interested in learning more about Mark? Read his “One Man and his Catheters” blog, which is packed with stories, videos, and inspirational interviews. Mark also recommends Shift.ms, the social network founded by people with MS, just for people with MS. He is currently the head of public relations at Shift.ms.
Mark received compensation for his contributions to this article.
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