First up a word of thanks, and then of apology.
The thanks goes to everyone who has been reading my posts, and in particular those leaving comments. I’ve noticed a few people wondering if I actually read the comments, and the answer is that I very much do. In fact, not only do I read literally all of them, but seeing what people write in response to me is one of the few highlights of my days at present. The reason I do not reply is not because I don’t want to, it is because the process of writing even the main blog entries is incredibly laborious and time-consuming, leaving little scope in and around physio and rehab sessions to do much else. Plus I know myself too well: if I reply to one comment, I’ll feel obliged to reply to every comment. Yet I very much need this Substack to serve as a release - a psychological and creative outlet - and certainly not to become a form of perceived obligation. Hence why I tend to leave the comments alone. But I do very much appreciate people taking the time to write them, and so thank you for doing that, if and when you do.
In terms of an apology, this relates to the increasingly dour content posted here. When I started this blog, even though only close friends and family were aware of it, I nonetheless wanted to make sure that it was not merely a catalogue of self pity. To some extent I was trying to fake it until I made it, but it nonetheless seemed important to try and retain a sense of humour, and even positivity at times - hence some of the probably ill-judged attempts at comedy here and there.
Clearly, there hasn’t been much of that recently. I wish it were different. But the truth is my life is now so monotonously repetitive that it is difficult to find anything humorous or lighthearted to say. It occurred to me the other day that my existence at present is essentially devoid of joy. I get fleeting moments of happiness, usually when friends have been able to visit for an hour or two, but joy seems a distant memory (with one pitiful exception that we’ll get to below). Without it, however, dourness seems inevitable, at least if trying to uphold the commitment to honesty that I have wanted to maintain since the start. So I apologise that the following post is another largely downbeat one. But I see no honest alternative at present.
Okay onto the, erm, substance of this entry.
I’ve mentioned several times that one of the hardest things to deal with following spinal cord injury is bowel management. And I’m afraid I’m going to go into a bit more detail about that. So those with weak stomachs may want to give it a miss from here.
Prior to my accident I drank five or six cups of coffee a day, exercised for hours at a time, and ate a high fibre diet with lots of fruit and vegetables. The result was that my bowel movements were very regular. We’re talking more than once a day, as standard.
Since my accident, I have had to try and retrain my bowels. It is now only feasible to go safely once a day, preferably in the mornings when someone is there to help me. Overall the goal is to only go once a day, if at all possible, because if you need to go more than once the inevitable outcome is shitting yourself in a wheelchair. (Remember, I cannot feel the warning signs. If it happens, it just happens.) Unfortunately, after five months of trying to develop regularity, my guts refuse to play ball. Barely a week goes by without me having what is politely referred to around here as an “accident“.
A couple of weeks ago, in an effort to change my bodily dynamic, my consultant and I discussed altering my routine. As it is in fact not uncommon for me nowadays to go for two or three days without having any “result” in the morning, we decided to experiment with me being manually evacuated by staff every other day, instead of every day.
I have to confess, I desperately wanted this to work. On the first morning that we switched to the alternate days routine, I delighted in simply being left alone. After being woken at 6 am for the compulsory early breakfast, I lay behind my curtain and rejoiced as nobody came to first stick a pair of suppositories up my backside, returning a little later to scrape shit out of my arse. For the first time in five months, I was spared the indignity. It felt glorious. I genuinely came the closest I have for many weeks to feeling something like joy. And the prospect excited me. A 50% reduction in humiliation? Bi-daily rather than daily reminders that I have been reduced to the level of a small child? Yes please.
Unfortunately, it wasn’t to last. Within a couple of days a new pattern emerged. On my days of not having bowel management in the morning, no problems would ensue. But on those days when I did have a “result“ first thing in the morning, then I would also have two more later in the day. As you might imagine, this caused chaos in terms of me being able to undertake physiotherapy sessions, given that if I soil myself I have to be cleaned up before I can continue. And if you think that being rolled over and made to shit in bed in the morning is humiliating, I guarantee that having to wheel up to nurses in the middle of the day and ask them to put you back to bed so they can wipe your arse clean is not an improvement. Reluctantly, I agreed with my consultant that the new experiment was a failure. Shitting yourself twice every other day is indeed worse than shitting yourself once a week. Even if accepting the latter means forgoing the joy of being left alone every other morning in an approximation of adult dignity.
The problem, however, is that I am now faced with continued irregularity. Part of the point of rehab is to develop regularity in the bowels so that one can return to some approximation of a normal life. Yet my discharge is looming, and so I am staring down the barrel of leaving rehab whilst still prone to shitting myself. Which raises hard to ignore questions. How do I go to work, knowing that there is a good chance one day I am going to crap myself in the middle of a seminar teaching students? Do I just have to get used to the idea of sitting on public transport, stinking of the stool in my pants, as I struggle to make it home - where I wait, potentially for hours, for a carer to come round and clean me up? Is this what my life consists of now?
My consultant advised me not to ask these questions yet. To try and just take one day at a time, allowing him to use his experience to try and use the time remaining to get things sorted out. I do trust him, and believe he will definitely do his best. But I’ve got less than a month here now, and I’m pretty sure the appalling state of my mental health means there is no chance I will be extended again. It is clear to everybody that I am in severe deterioration, and that staying here is not good for me psychologically. (The fact that having absolutely no idea where I will be come late January is itself a massive trigger for anxiety and depression seems, however, conveniently ignored.)
More generally, I’m really not sure the staff here understand how psychologically taxing even just the bowel aspect of this appalling condition is. Every patient I have spoken to about bowel management seems to find it as appallingly unbearable as I do. I appreciate that for the staff it’s just part of the job: they are habituated and desensitised to it by now, and so for them rating the consistency of your stool on a recognised scale of 1 to 7, and congratulating you on having had a “large result”, doesn’t seem like a big deal. By contrast, having to ask other people how well formed your shit was this morning, and whether or not much at all came out, is a very hard thing to get used to. The prospect of having to do it every day until death claws at one’s sanity.
The ultimate hope, I suppose, is that one simply gets used to it. That with enough time having passed it just becomes normal, something one experiences as a necessity, but which no longer raises emotion. Or at least, is treatable as such on the days when one manages not to shit oneself in public. Which is hopefully less than once a week.
Like I’ve said before, it is amazing how important the small things can become. But not always in a good way.
I am not sure what this reply is; an attempt at solidarity perhaps. It will be graphic. You may not wish to read it. If you are currently eating, or are planning to, then you definitely should not be reading it.
Many years ago I started getting very unusual and intense stomach pains. These were accompanied by small amounts of blood in my stool. Having given these unwelcome developments careful consideration, I decided that the most prudent course of action would be to ignore them until they went away. Seven months later, the spots of blood had become a biblical torrent. There was so much blood. It was horrifying, like the elevator scene in The Shining. The pain was occasionally so bad that I would suddenly find myself lying on the ground, utterly bewildered as to how I had got there. A split second later, whatever internal mechanism had temporarily disabled my pain receptors, after I had blacked-out, would disengage and I would be engulfed by an agony so exquisite that to describe it as pain would be like comparing the radiant face of God to a 40 watt lightbulb. The experience was so overwhelming, and so over the top, that the only response left at my disposal was hilarity. For a while I assumed that was how I would die: Unable to stand, laughing hysterically into the carpet.
My GP, who has the bedside manner of one of those giant stone heads on Easter Island, and who is not unusually a very empathetic or proactive man, listened to my symptoms and then immediately referred me to hospital. I went through a battery of tests. Initially I was diagnosed with ulcerative colitis. An anomaly in my liver, that showed up in a CT scan, and later in more detail on an MRI, was eventually diagnosed as Primary Sclerosing Cholangitis. The two conditions are linked in some way that is not well understood. My non-medical opinion is that the UC is a product of the PSC and that, where both conditions are present, UC should be treated as a symptom of bile duct disease, as opposed to a co-morbidity.
One thing that continues to amuse me, when discussing my ulcerative colitis with a nurse or a doctor who I haven't met before, is the etiquette of finding mutually-acceptable terminology for describing bowel movements. It is comparable to the opening of a game of chess against an unfamiliar opponent; a series of tentative preliminary moves, where neutral vocabulary such as 'yield' and 'consistency' – words that I would rather were kept out of the bathroom – are proffered.
A registrar, who I think was fairly new in the profession, presented me with a copy of the Bristol Stool Chart. I am sure you are familiar with it. It is a sheet of paper, or laminated card, with pictures of different types of stool on it. You are supposed to select the one that best represents your bowel movements. Far from being a scatological slur against the people of Bristol – the city that gave the world Banksy – the chart gets its name from the Bristol Royal Infirmary, where it was developed. I told the registrar that nothing on the chart compared to what I was dealing with and that it urgently needed an addendum. I have strong opinions regarding the limitations of this diagnostic tool.
When I was first told that I had ulcerative colitis, my mind immediately jumped a few years back in time to an occasion where, without any warning, I shat myself in the streets of Kolkata. I had been dealing with the kind of prolonged gastric illness that westerners visiting India will commonly experience. The previous evening, perhaps unwisely, I had sunk a couple of beers at Fairlawns – a throwback to the days of the Raj that had somehow survived the end of British colonialism.
I was living in a hotel with a Dutch girl, who I will call Margreet. She was nice but very naïve and a bit of a handful, always throwing out curveballs. Her first words, croaked to me one morning, while I still wasn't properly awake, were: “I need to see a gynaecologist.” She had come across the Nepalese border with her trainers stuffed full of pot. We lay on the bed and smoked her sock weed while she bemoaned my disinterest in discouraging her from purchasing and then eating large quantities of cake.
People often journey to India from the west seeking religious enlightenment. As I waddled the two miles back to my hotel in the early morning heat, with my underwear full of congealing diarrhoea, I discovered my mantra: “Please don't let Margreet be there”. As I passed the cricket ground, I remembered something else. The water for the entire street was turned off at midday. I had twenty minutes. I ran, leaving a trail of slurry behind me. Outside the hotel, I stuffed my trouser legs into my socks. My prayers had been answered. Margreet was out and never learned of my accident. I undressed while trying not to look too hard. What I saw was pretty bad. I rinsed both myself and my jeans thoroughly. I threw my socks and underwear out the window where they plummeted several storeys into an alleyway below.
I had a vision that my life with ulcerative colitis would be like that morning in Kolkata and so far it hasn't. Having lived with the disease for a while, certain patterns have become evident. I have gained an understanding of how my body functions and how I can minimise my risk of an accident, for example by timing my meals. This will be of absolutely no help to you, but the one thing that improved my colitis immeasurably was working with a kettlebell – I don't know if it's the motion or the bending of the body. All I know is that it works. I wonder, is there some kind of massage or rehab exercise that might promote bowel movements in someone of your condition?
I do have one piece of advice, as you prepare to re-enter the world: Learn to separate your sense of dignity from your condition. I have met people with chronic illness who conflate one with the other and they are not happy souls. Your dignity should come from those areas of your life that you do control. You will encounter members of the public who, thoughtlessly or cruelly, will regard you as undignified on the basis of your condition. You need to develop the mental fortitude to rise above that nonsense.
It's funny because my day started with an edema followed by 2 hours in a shitty bed and then witty remarks about the "large amount produced by my small body". Even the head nurse was called in to admire it.
Is it actually funny for me? Not at all. But, given the circumstances, I cannot do otherwise. Depending on others is a pain, when it comes to things you would do behind closed doors it is pure humiliation.
But your focus, our focus, should be on other matters we may have a better chance to get some control upon. And I assure you that with the right diapers the smell is not an issue.
Stay strong!