Friday 13 May 2022

blood on the tracks...

TRIGGER WARNING: if you’re squeamish, you might want to sit this one out.


I’ve been intermittently self-catheterising for a few years now. For those not in the know, this is where you take a lubricated, 40cm long plastic tube and insert it into your urethra until it reaches your bladder, at which point your bladder drains. Why do I do this? Well, one of my least favourite things about multiple sclerosis is that the nerve damage it causes has affected the wiring between my brain and my bladder. What this means for me is that my brain tells me that I need to pee much more often than I actually do need to pee, but also means that my bladder doesn’t completely empty when I do pee. This is a pretty toxic combination, because retained urine can cause infection and also because it means that you can’t trust the signals from your brain telling you that you need to pee. Annoyingly, on top of this, I also get sudden bladder urgency, where I will go from not needing to pee at all, to desperately needing to go in the space of about 60 seconds. 

Annoying, right? 

Well, one solution to this is self-catheterisation. If you catheterise, you are absolutely guaranteeing that you have completely emptied your bladder. This means both that there is no unpleasant retained urine, but also you can know for a fact that any signal from your brain that you need to pee is a false flag. 

It might not sound ideal to be shoving a really-quite-long tube down what was previously a strictly one-way deal, but it’s amazing what you can get used to if you have to. 

Now, sticking that tube down isn’t actually that big a deal: it’s lubricated and there aren’t too many nerves down there to mean that you feel anything. You feel a little bit of resistance as you push through the prostate, but if you persevere then you’re pretty much there. You do need to be slightly careful to make sure that your hands are clean and that you keep the risk of infection as low as possible, but that’s not too much bother. I initially only did this once a day, just before bed. Just recently, I’ve started doing it a little more often than that, but it’s not really a big deal and it’s worth it just to be comfortable. The catheters are supplied to me free of charge, to my door by the NHS and it’s all good. 

Well. Until it’s not. 

On Wednesday this week, I decided I would cath before heading out to a choir practice. I felt a little bit of resistance a little higher than usual, but I was in a bit of a rush, so I just pressed on, pushing until I had reached and drained my bladder. As I pulled the catheter out, I caught sight of a tiny drop of blood flicking into the toilet, but I didn’t really think much more of it. By the time I got home a few hours later, there was blood inside my pants. 

Yes, it is a little alarming to be bleeding from the tip of your penis. The next morning, when I peed, my stream was a deep, bloody colour with a few clots before running clear. Nice, huh? I was pretty sure that all I’d done was to scrape my urethra and that it likely wasn’t all that serious… but even so, right? I rang the continence clinic before guiding my friend Alan on a 4.5 mile run, and they told me to head to the hospital. I completed my run, did a couple of hours of work and then headed into City Hospital, where they were expecting me on one of the wards. 

As has almost entirely been my experience of the NHS, all the staff were fantastic. I had to wait around for a bit, watching with a terrible interest as the doctor explained to the nice old gentleman at the bed opposite that the bladder normally has a capacity of about 1.5l before it starts to be in danger of bursting, and that they had just drained over 2l from his… 

It turned out that the doctors were more concerned about the dangers of me possibly retaining urine than they were about the bleeding. Had I catheterised since I’d started bleeding? Well, no. I was peeing normally. Bloody, but otherwise normal. I wasn’t in a hurry to shove another catheter down there until I knew that I wouldn’t be causing any further damage. After a consultation with the registrar, I was offered a catheter – something that I would have to wear, full-time, for the next two weeks. Not my 40cm tubes, but the whole nine yards with bags and everything. This would give my urethra a chance to heal whilst making sure that I wasn’t retaining any urine that might cause infection. 

Look, if I felt it was necessary, I would have worn the catheter. Hell, the day may come when I can’t avoid one… but I didn’t feel that this was the time. I catheterise mostly because I don’t want to be going to the toilet every half hour, not because I am in serious medical danger of an infection. Not yet, anyway. I have the luxury of being able to choose whether I catheterise or not; I find it helpful, but I don’t think it’s a medical necessity for me. I gently pushed the doctor back, and after consulting with his registrar, he agreed to let me go if I self-catheterised successfully before leaving the ward. Reassured that it was likely to be okay to do so and that I wasn’t about to reopen my wound and start bleeding profusely again, I happily did that and then we all agreed I could go home. On the way out, I poked my head around the door of the staff room to thank my doctor, who had been lovely throughout. It was a pretty small room, and it was filled by about six junior doctors (including mine) with their heads buried in textbooks, cramming for their exams. Sheesh. Who’d want to be a doctor? 

Thirty-six hours after the initial incident, I’d stopped bleeding and everything seemed to be back to normal, which I will admit is something of a relief. However, I have learned (or been reminded) of few important things:

 - The NHS is an amazing and precious thing. It was there when I needed it and helped me without question or charge. The staff are hard-pressed, under-rewarded and yet somehow (on the whole) manage to retain their grace

 - It’s amazing what you can get used to. A younger me would find the idea of self-catheterising awful, never mind the idea that I might one day find myself to be oddly calm and rational about finding blood in my pants (or that I might also have a wife who was equally calm and reassuring at the sight of the same. Although, to be honest, younger me might just be astonished that I have a wife at all. Does that mean I’m maybe having me some sex too?)

- If you find yourself self-catheterising and you encounter some resistance (above and beyond what you’d expect from your prostate), don’t push! 

The tl/dr version of this is that self-catheterising can be scary but it's really good.

I wasn't going to blog about this, but Steve had someone comment on an old post of his about self-catheterisation just the other day, and it occurred to me that this sort of information might be useful to someone in the future. There's a lot of unhelpful and often just plain negative stuff about MS online, which is one of the reasons why I've been determined to be honest but up-beat in the first place. If you have stumbled across this, I hope you found it useful and not frightening. MS can be a lot to take in, but I'm pretty sure you've got this. Feel free to drop me a line if you want to discuss anything I've talked about here. 

I mean, clearly, I have no boundaries.

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