The brutal brilliance of bladder Botox

I’m away on holiday for a couple of weeks soon and this means taking two boxes of urinary catheters plus an extra box just to cover all eventualities. And that’ll take up a considerable amount of space in the case.

Recent experience bears me out. A couple of years ago, we spent four weeks travelling round Australia. This was an unforgettable experience that involved everything from snorkeling on the barrier reef to cuddling baby kangaroos. The whole holiday was marred only by a kidney infection in the outback (treated) and subsequently running low on catheters in my final week. I was still able to pee at that point, but unable to completely empty, which left me needing the loo more often. In the end, I had to make do by rationing myself to one catheter a day (middle of the night) to leave me enough for the flight home.

Last year things had deteriorated to the point where I was less able to ‘go’. At the end of a week in Spain I had one catheter left for the journey back. I decided to use it before the one hour drive to the airport as I felt the need and I knew I had a few spares in the boot of my car in the car park back home.

Stuck in traffic on the ring road round Barcelona, a text came through from the airline to say our flight would be two hours late leaving. On the one hand, this was good news because we weren’t confident we were going to make it to the airport in time, but it was also bad news for me as I knew I’d need the loo again before take-off. To say I was ‘bursting’ all the way home is the understatement of the year. I don’t think I’ve ever been in so much bladder-related pain.

I recounted all my experiences to my sympathetic MS nurse who laid out the different options. These mostly consisted of different medications to either augment or replace the Solafenacin I was already on.

Of the options presented, there appeared to be only one thing that would do the trick, and a subsequent visit to the urology department sealed it: Botox injections it was.

The theory behind this is you get twenty or so injections into the bladder wall; this causes the relevant muscles to contract and then the bladder can take loads more in terms of volume. The only catch is if you were able to pee by yourself before, you definitely can’t now, so you’re completely reliant on self-catheterisation.  Not a problem for me, of course.

Eventually the day came for my injections. I turned up on time after dropping my youngest off at school and driving the ten miles to big-city hospital. My name was called just as my bum hit the waiting room seat, which at least spared me the torture of the piped local radio.

After a quick, less-than-gentle, wash of the relevant area by what was apparently a sponge on a stick, the procedure itself involved a rod being inserted into the bladder. There’s only one way to get it there folks, but as the rod’s no wider than a regular catheter there’s no real discomfort. It’s wide enough just to enable instruments such as a fibre-optic camera and needle to be passed through.

First, the bladder’s inflated with saline solution so the camera can have a proper look round to make sure everything’s healthy. I had a peek on the monitor above my head to satisfy myself and everything was pleasingly pink with little red veins spidering the walls. Then once the two doctors were happy, handling what appeared to be long thin joysticks, they got to work – one advanced the needle to the next injection spot and the other deployed the Botox.

The injections were as you might expect: they hurt in the same way that dentist’s injections hurt and some more so than others. For some reason – possibly because I have to inject medication everyday into relatively fleshy, relatively pain-free areas – this came as an unpleasant surprise. I was a bit too much of a wimp to watch the procedure on the monitor, opting to grit my teeth and stare at the ceiling instead. I’ll save the joy of that experience for another time, when I’m an old hand.

After about ten injections, they let me know they were halfway through, allowing me to have a breather for a second or two, and then they were off again: 21 injections in all.

And that was it. I was led away to dry myself and get dressed and then my pressing need was to find a loo to empty the saline they’d pumped in.

Apart from me, there were three others in the operating room: two doctors (one female) and a student observer. I didn’t mind, I’ve long since lost any inhibitions about exposing my nether regions to medical staff. I just found it a short, relatively brutal experience. It’s over in ten minutes flat.

I don’t know if it was because it was my first time, but I immediately felt the need to be by myself and ‘lick my wounds’ afterwards. Not easy in a big city hospital with a concourse filled by wheelchairs, visitors, charity stalls, staff waiting for lifts, and people in dressing gowns clutching cigarette packets making a bee line for the exit. I didn’t even feel like sending the promised text to my wife to say that it was all over. I just wanted to shrink into a quiet corner. Even the chocolate I’d promised myself as a reward for being brave tasted flat.

But, boy! What a difference . . . I go to the loo as often as a ‘normal’ person now, four to six times a day, and only once during the night, depending on how tired I am (I’ve even slept through a couple of times). One exceptionally busy day at work, I only realised I hadn’t been to the loo all day when I was halfway home – a total of eight hours. This is a far cry from the bad old days of yo-yoing to the gents and back. I can’t tell you how much this has improved my quality of life. It was totally worth the ten minutes of discomfort.

So how long does the Botox last? I’ve been told it could be anywhere between three and 12 months with most people averaging at six. It’s been four months for me, now, and it still seems to be going strong, so I’m very happy so far. There are no side-effects either – from the Botox or from the medication that I no longer take.

All the better for me to enjoy my forthcoming trip and one more aspect of MS that I won’t be taking with me.

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It’s been a while..

I knew I hadn’t updated this blog for ages but I didn’t realise the last time I had anything to say was September 2015.

I’ve been busy caring for an elderly relative (now in residential care) and editing a poetry journal (now resigned), so I’ve either been exhausted or lacking the will and free time to exert myself with anything less pressing unfortunately.

My MS could also be described, to nick Viv Stanshall’s genius description of Rawlinson End, as ‘changing, yet changeless as canal water’, so it might be a year or two before I realise that anything has changed significantly enough to report on.

So what’s new? Three things mainly…

Firstly, I had a relapse involving optic neuritis about a year ago which kicked me into safe mode for a few weeks and I took some time off work. It’s a symptom that hasn’t really bothered me much for over ten years so for it to kick in was a bit of a shock (and painful to start with). All better now apart from a bit of noise in my vision.

Secondly, I’ve lost a stone in weight. I asked my GP to refer me to my local council-run sports centre a while back to try and get myself in shape. I didn’t have the time to do that, though, as already described, so I just put myself on a strict diet of my own devising. This seems to have worked. I’ve also recently taken to waking up at 5am to go for a run round my local neighbourhood (just a couple of miles each time). It’s a good time of year to do this as you have to keep moving to avoid freezing solid. The only other people around at 5am are milkmen, gritter drivers and people who either commute long distances or care about their careers too much, scraping the ice off their windscreens.

Thirdly, I was referred to my big city hospital’s urology department to sort my rapidly deteriorating bladder problems which were a massive drain (‘scuse the pun) on my quality of life.

I’ll cover the last two points in forthcoming posts – bet you can’t wait.

Until then…

Making lemonade #2

Way back when I started secondary school, a rumour went around that all the boys would need a medical during the first term. This would involve a procedure where a nurse would hold our testicles while we coughed.

This never happened, of course, but a part of me believed it. It made the eleven year old me unduly anxious to say the least.

I often think about how cool it would be to be some sort of guardian angel to my awkward, shy, younger self. I’d put a supportive arm around my own shoulders and whisper something into my ear… some mature advice to make me feel better: “That thing about a nurse holding your bollocks? It won’t happen. It’s utter nonsense… ha ha! Just you wait another 30 years.”

Fast forward to the other week…

I’ve learnt a new skill!

It involves passing a foot long length of tubing into the most sensitive and private part of my anatomy.

The first time I did it, I had my trousers round my ankles, while a nurse (female), who I’d met for the first time barely 20 minutes previously, looked on, rubbing my shoulder in a supportive, encouraging manner.

Yes, I have to catheterise myself at least twice a day, now, due to the fact that I retain approximately one pint (500ml) of urine in my bladder, even after visiting the loo. The urology nurse who came to visit told me that anyone who regularly holds 400ml of urine is advised to catheterise (the MS Trust say anyone holding more than 100ml), so I fall (un)comfortably into that bracket.

I’ll be performing this procedure for approximately… hmmm… how many months? Oh wait!… The rest of my bloody life!

I’ll be honest with you. The first few days you try it, it isn’t easy to do. I winced each time at the prospect of threading the tube into such a seemingly tight space. I also had to change the type of catheters I was using as the initial bendy latex ones were causing too much pain and I was finding blood in my urine. Plus I found them as easy to hold as a live eel. But two weeks on, with stiffer, differently lubricated catheters, it’s a lot better, and I feel a lot calmer doing it.

So has it worked? Do I visit the loo less urgently? Do I go less often? Do I finally have an unbroken night’s sleep?

The answer to that is yes and no.

I can’t describe how crestfallen I felt on the first night. After painfully tubing myself before going to bed, I woke up at 2am, 4am, and then 6am desperate for the loo. It was as if nothing had changed. Nothing except for the fact that I now had to perform some sort of low level surgery on myself.

After a few nights of this, a phonecall to my MS nurse and a visit to the GP meant that I’ve started taking solifenacin tablets to relax the bladder muscle and reduce the urge to pass water.

It’s early days still, but I mostly wake up with my bladder just once a night now (and I catheterise when I do). During the working day I might make a trip to the loo, two or even three times in my six hour shift, instead of three times an hour, so to me, it’s an unbelievable turnaround. In the daytime I couldn’t be happier. I’m getting to be friends with my bladder again and it turns out he’s quite a nice guy.

There’s still the element of waking halfway through the night to contend with, though. I wonder if part of it is to do with learned behaviour. Perhaps my body automatically wakes up at regular points during the night and now needs to be retrained. I’ve tried to combat the night time loo visits by cutting down massively on the amount of caffeine I take in and the drink of water I have with my evening meal is often the last liquid to pass my lips every day.

It’s early days on the pills, though. Tomorrow marks one week of taking them and the GP told me it takes about seven days for them to kick in (the MS Trust says up to four weeks), so we’ll see how it goes. I don’t remember the last time I managed to sleep through the night without waking. The day I finally do, I’ll be partying.

Making lemonade

“To make lemonade out of the lemons life throws at you, you sometimes have to strangle kittens.”

Somebody tweeted that recently. Oh wait!… It was me! I tweeted it!

Why?

Because to aid a restful night’s sleep and to stop myself getting urinary infections, I will now have to self-catheterise every day, at least once a day, for the rest of my life.

Hooray! MS rarely gets sexier than that, eh?

Oh well, something else to put on my health CV.

So what’s happening?

I went to the hospital for my yearly check-up this week. I had to have a bladder scan after my usual neurologist appointment. Despite this, I needed a wee really badly when I finally got to the clinic and I used the loo before I’d even checked in at the desk. I’m sure you won’t mind me saying – it was a nice big wee.

45 minutes of waiting room passed as all sorts of MS patients came and went. Some who looked fitter and healthier than me to those in wheelchairs. MS waiting rooms are funny places. I always sit at the back, so I can look out over the city (the clinic is on the 11th storey of a hospital on top of a
hill). I always feel like I’m being weighed up by the other patients when my name is called and the very slight limp I have and the clumsiness I feel as I circumnavigate all the chairs seems amplified all of a sudden).

After my usual questions with the neurologist I got to see one of the MS nurses. Not my usual one.

He scanned my bladder – I had about 640ml of urine in it. I was just about ready for another wee, so he gave me a bed pan and off I went to the loo again. Again, it felt like a nice satisfyingly big wee. As it trickled to a stop I had a slight residual feeling there was more there but the feeling passed and I couldn’t go any more.

The reveal moment came when he told me that I’d managed to pass 120ml of that original 640ml and sure enough the follow up scan revealed that I had about 500ml of wee still inside me. To put it in context, a bladder can hold up to 1.5 litres, so that pint of wee I’m carrying around everywhere is about a third of a bladderful.

I think I can say I was mildly shocked.

Anyway, treatment options were discussed and we both decided that self catheterisation was the way forward. This will involve passing a thin lubricated tube, about a foot long into my bladder every day, once or twice (or more) a day.

It sounds potentially painful, but to his eternal credit he intimated that he’d tried catheterising himself to see how it felt. Just so that he could talk honestly about it to his patients. I felt completely reassured about it and I’m sort-of looking forward to the nursing team who will visit me in the next
week or two to show me how it’s done.

Actually, I’m not looking forward to it at all, but if it needs to be done, it needs to be done, and I’ll have a follow up appointment with the MS nurses in a month or two to see how I’m getting on.

A lot is said about specialist MS nurses and how great they are, but let me say this… I have received care from my MS nursing team for about five years now and going to see them is like going to see a good friend. Even though I’d only met this nurse for the first time, we had a long chat about music, bands we’re both into, cycling, drumming, vegetarianism, local neighbourhoods I wanted to explore after my visit and so on… He even made me a cup of tea. Despite the white coats and the technical equipment hanging from the walls, I completely forgot I was in a hospital.

I said as much on the online hospital feedback form the next day – credit where it’s due, and all that.

Travelling the ten or so miles into the big city and the usual pains of parking spaces, students and traffic congestion put aside – it’s always a pleasure to visit. Long may it continue to be so.

Three cheers for MS nurses!

Incidentally, I nearly chose “Taking the piss” as the title for this post, but felt that would have been unfair.

More soon…

PS – the shaking I experienced recently, didn’t tick the boxes of a fit, but may have been some residual dream-movement, like I thought.

Alcohol

It has been amended since, but I once laughed at a section in the MS Society publication “What is MS?” which described potential problems when drinking alcohol.*

The problems highlighted included balance, bladder control, slurred speech and double-vision.

“So how do I know when I’m getting drunk then?” I thought.

Last week I had a few pints of lager at a wedding reception. I see two objects when my eyes look left anyway, but I found it difficult to straighten my vision out coming back to centre.

I guess this contributed to my drunken state, because it made everything swim earlier than it was meant to. A most unpleasant sensation and one that made me feel a bit maudlin for a while.

The boundary between sober and drunk is now very (‘scuse the pun..) blurred.

* The publication has since been amended to say that MS symptoms can become more acute when drunk.

Life with MS – Part One – Symptoms

I don’t want to come over all “woe is me” because there are plenty of people out there on the internet trying to out-do each other with their bad symptoms and there are many others with MS who have it much worse than I do (my old neighbour who also has MS, doesn’t recognise me now when I see her).

I thought for the purposes of this blog that it might be useful to document some of the symptoms I have experienced both now and in the past to give readers some idea of what it is like to have MS. Please note: this list does not include the marvellous array of drug side-effects. More on those later.

Symptoms happening now:

Doublevision (since March 2008)
when I look left I see two of everything side by side. Simple as that. The more I look left, the bigger the displacement between images. Makes crossing the road and recognising people in the street difficult. Constantly closing one eye takes it’s toll too, in terms of fatigue and people thinking you are crazy.

Nystagmus (since summer 2008)
When I look right, I get nystagmus. My eyes flicker and won’t keep still. It gets worse if I’m tired or have done some exercise and I can sometimes get jumpy eyes looking straight ahead. It makes reading and watching telly very tiring and I don’t read as much these days.

Intranuclear Opthalmoplegia (since March 2008)
Looking left to right or right to left my eyes travel at slightly different speeds so it takes time for the two images to match up when looking right. Things can look a bit trippy when glancing round all over the place.

Oscillopsia (since 2007 or earlier)
my vision jumps around all over the place if I am running or walking strenuously – a bit like running with a video camera.

Pins and needles (intermittent until March 2008 and constant since then)
I get tingling sensations in my fingertips constantly. Sometimes it subsides to a faint tingle. Once or twice I have had a window of half an hour or so when they have disappeared completely (the drugs working). Mostly I get the electric tingling sensation in my fingers only, but it can spread to my hands and even my forearms. I also get these sensations in my feet, particularly my right foot. My right leg feels fuzzy for most of the time and walking can be troublesome on a bad day. I have numb patches on my right foot. This all gets worse if hot or tired. Also according to a 2004 diary entry – I had a week where half my head had pins and needles.

Bladder problems (not sure since when)
I sometimes find it hard to go. I don’t always fully empty my bladder – I simply can’t – and I can need to go to the loo several times during the night giving me a disturbed night’s sleep.

Cognitive Problems (not sure since when)
I have difficulty with concentration and short term memory – a particular problem with routine tasks, such as making payments to the child-minder, credit cards etc. My mind can wander in the middle of conversations as well and I lose the thread of…. erm… …anyway I have an old pre-diagnosis diary entry where I thought my memory and concentration had improved since taking Omega 3 tablets, but I was probably documenting a remission period.

Pain (not sure since when)
Apart from the pins and needles, I get sharp shooting pains from my finger tips occasionally. The worst pain I get is a weird cramping sensation in my legs which feels like insects (ants in my imagination) moving around under the skin. This is unbelievably uncomfortable and when it happens I can’t keep still and I can’t relax. This happens almost daily and can start as early as mid-day.

Fatigue (since March 2008, but also during hot days in 2007)
Like someone has taken my battery out. I had this at work once and found my mind blank as if I was sleeping with my eyes open. It happens intermittently and when it does I might as well be made of concrete. I will just want to sleeeep.

Other symptoms:

Stiffness / Muscle spasm
(Spring 2008)
I had a problem with this in the spring of 2008. I was an old man for three days – stiff as a board. I found it very difficult to move. It coincided with having hives – I think I had an allergy to some washing powder which brought this on. I also had involuntary movement of my calf muscles in March 2008 – in a relaxed state they were moving and twitching all over the place.

Optic neuritis (March/April 2004)
Flickering lights in my vision. Some pain in my eyes when looking round. Flashes of milky white light in my vision when looking round in the dark.

Headaches (July 2004)
I reported in my diary of the time that I had a headache that had lasted for four weeks. Of course, I could have had any number of MS induced headaches, but when one lasts for four weeks, it’s a dead cert.

L’hermitte’s sign (March 2008 to Autumn 2008)
Placing my chin on my chest created an electric shock sensation travelling down my back and into my thighs, or, on a good day, like someone pulling a tickly, twiggy branch up my back. I think drug therapy may have cleared this one up for now.

Vertigo (2004 to 2008)
An intermittent symptom – it comes and goes. I felt a mild wave of giddiness the other day when I was bending down for something, but at it’s worst vertigo can make the whole world spin and induce a feeling of seasickness. Even turning over in bed can make me lose my balance completely and I have to sit up to regain my bearings. In 2004 and 2007, this was one of the major symptoms I had to deal with and I spent a night of hell intermittently spinning and vomiting in 2007. I also used to walk into the walls along the long corridors at work. It’s very unpleasant – I would rather have doublevision over this any day.

Ultra-sensitivity (pre-2007 to 2008)
I have patches of skin that can be ultra-sensitive and uncomfortably ticklish.

So there you go. Quite a wide range of stuff, sensory and visual mainly.

I guess since diagnosis I am more aware of everything that is going on, so I may have missed out a whole heap of weirdness that has come and gone over the last few years. Now I am on beta interferon, the length of time between relapses should lengthen, but I should be able to recognise when one starts when new symptoms start appearing or old ones start re-appearing and I will document it here.