Follow Graham on Twitter

Sunday, December 5, 2010

Taking Charge
I am sure this is not a topic for polite society, but when you are paralysed from the waist down, it can be become an obsession. Shit gets everywhere. I could add ‘if you are lucky’. And here I have had some hysterical episodes. If you can bear to, please read on. If you really can’t, then feel free to skip this chapter. At the end of the day it has the same essential message, which is ‘Take Charge’ with the rider “If you possibly can…” You may of course need help and cooperation to get you to the point where you can take charge.
So what I have is some problem (maybe an embolus from somewhere), that damaged my spine at the level of the edge of the ribs (T6/T7 to be technical). Started on the right side, went down all of that leg, then the next day decided to come up the left leg to not quite the same height (T9/10). So what this means is that anything below this level is not served well by my nerves (sensation and action, automatic or not). I have a major problem with bowels, which is from nerve damage (‘neurogenic’) and I guess everyone expected that I would have this problem given the story, and the level of damage. What nobody was able to tell me was how much it will improve, though the signs after the first month were reasonably good.
So from the beginning, I was unable to go; just packed solid. None of those funny feelings you get, not much in the way of those gurgling noises (it has a such a cute name – ‘borborygmi’), my regular early morning pattern disrupted, and an absence of that squeezy feeling you sometimes get after eating a meal (‘gastro-colic reflex’) simply because a full stomach sits on top of the large bowel. Just none of it there. A slightly protruding and more flaccid stomach than usual, full of… (Actually you often hear of various people being called ‘full of…’ I think I’ll stick with the current problem).
By day five, there was beginning to be some concern in the medical camp, so I began on Movicol which is a softening agent (it contains macrogol or polyethlene glycol, a type of osmotic laxative – basically it absorbs and holds water). Some people don’t like the lemony rather sweet, sickly taste, but I found it alright. Just drink it down twice a day, because the nurses give it to you, and because you have to. “Get on with it”. They also gave me a couple of Coloxyl twice a day. This is intended to increase the bowel activity – that is gripe you a bit. You need that gripey movement to squeeze things through, and of course most people have that without having to take pills. A couple more days with a marked lack of activity led to increased concern levels and there was hushed talk behind curtains of a Shaw’s Cocktail. Oh dear. What was I in for?
So one night this really lovely, caring, mother figure with braided hair, a nurse from Soweto in South Africa, was given the task. The recipe was explored, ingredients gathered, Senna crushed, Agarol poured into warm milk, lashings of sugar added, and down it went. Yeah, and…? Yeah, and not much...
There was a gradual increase in movement perhaps. Some wind passed without my really feeling it; there again, that was a very good sign because it means something was going on, even if I could not actually feel it. After 36 hours there was some liquid as well when I went to the toilet. So the morning after that, following a serious medical discussion of consequences and the need to really get things on the move, the scale of things was increased – 2 Microlax enemas. Nothing much resulted. So the routine of two sachets of Movacol, and 2 coloxyl tablets twice a day was continued, to which they added Senna, and planned more Microlax. Jan swears by Kellog’s Guardian (‘Everyone needs a Guardian’), so this had been added to my breakfast routine. It contains something called Psyllium which absorbs and holds water to form bulk.
In the meantime I had transferred to the neurological ward from the semi-acute ward. The next morning we planned microlax times two, which was given at 6.15am. By 6.45am I just knew that something was happening – strong movements, feelings in the rectum (at last the feelings beginning to come back), and some passage of wind. I rang the bell at 6.50am. No response. At 6.55am I rang the bell again (yeah, I know I was being precise). No response. At 7am I rang the bell twice. No response. At 7.05am I rang the bell 5 times. No response. At 7.10am I rang the bell again 5 times again. No response.
You will realise that being paralysed for the moment, I could not actually just step out of bed and toddle off to the loo, even if it was en suite, and about 10 feet away. My legs just would not bear weight. So I needed lots of help being lifted to transfer from the hospital bed to a bathroom wheelchair with four small wheels, and a seat rather like a toilet. It can be pushed to sit right over what looks like a normal toilet to position me, the two front wheels being locked down for safety. I actually also needed some help getting pyjamas off and then back on. Oh, and this is embarrassing... I had to wear some sort of nappy, and had come very slowly and reluctantly to accept that the one that gave me the best sense of confidence and security was a ‘pull them up’ (PTU) - just like my grandchildren have worn. Anyway, they are a fairly tight fit, and I couldn’t get those down either.
So at 7.15am, 2 nurses arrived, assessed the situation and then called a Wardsman (a ‘Wardie’) to do the lifting. Oh dear, yellow baby-type poo all over the bed, and all over me. As they wrestled to get me as quickly as possible into the toilet chair, it got all over the wheelchair, all over two nurses, the wardie, and there was a steady trail leaked into the bathroom. It was all acutely embarrassing. How are the mighty fallen! When I related the story later, Jan said: “That will larn them; should have come as soon as you rang the bell”.
Well, you get over the immediate embarrassment, and to be honest there was some laughter in the room, while I sorted out in the bathroom. That was relief – yeah, in both senses. Problem fixed? Certainly a good result, but not yet the end of the saga. I showered as carefully as I could (and that’s a story for later), dried off, shaved, cleaned the teeth, put a new T-shirt on, and dragged myself and the chair out of the bathroom in search of clean short pyjama pants, a larger nappy, and a return to bed courtesy of our wardie… with profuse and repeated apologies. “It’s not a problem”, he said, “Hey, shit happens”. Nice man.
So what happened? Why didn’t they come (knowing they had given me 2 Microlax enemas)? Should I have been angry, frustrated, blamed them rather than me? Well, you know, as I have said elsewhere, life is full of systems, and I had just fallen foul of one - literally. As the type of doctor I am, doing the kind of job I do, and despite all my training, I have no knowledge of ward systems. They have evolved over time since my early days on wards, and I had not been a patient in a hospital ward before. The story is that 7am is a nurse changeover. It is sacrosanct. It is necessary to ensure that the day nurses are fully briefed about all the patients and their progress. It begins somewhere about 6.50am I think, and finishes about 7.10 I think, depending on reports and necessary discussion. Nobody told me this. There was no discussion of how to cooperate with nursing staff when you are first admitted. You just have to learn… And if you want to begin to take charge of some of your care in hospital and at least make a contribution to your own health improvement, then you will have to learn the local systems as soon as you can. Ask one of the nurses when you first arrive: “When are changeovers?” If you are really ill, and can’t ask for yourself, ask a relative to find out. It will save all sorts of aggro.
There really should be a practical little book or folder on each bedside table like they have in every hotel I have ever stayed in, telling you about routines. “Breakfast is at…, lunch at…, and if you want a hairdresser, or want to order in a Pizza, please phone this or this number”. Unbelievably there was nothing like this in the hospital I was in. There was not even a booklet explaining how to use the bedside phone; I never did find out how to dial out of the hospital, I just gave up and pretended the phone was not there. Luckily I had my precious iPhone within reach at all times, my little lifeline to the outside world (more of this later). But seriously, why is there not a booklet or folder: ‘Introduction to the Hospital; things you really need to know”? You know… ‘Tea ladies do not pick up grapes’, ‘Nurses do everything and are very busy, particularly at meeting times’, ‘Doctors have 5 minutes to see you and are not interested in idle chit chat – only any new and exciting symptoms which might need to be expensively (or is that extensively?) investigated’. At the start of this paragraph I used the word ‘practical’. Systems have some insane belief that you might be interested in the history of the hospital, how much money it soaks up per annum from us as taxpayers, how rapidly it has grown over the last 60 years, the 351 most generous benefactors, the latest bit of you beaut equipment, and the current board of governors. I can guarantee, as a current patient, all I wanted to know was when nurse changeover is, how to use the phone and how, after a month in the place, where I could get a haircut.
If you have this sort of practical information, you can plan a bit of the day for yourself, which reduces embarrassment, avoids aggro on both sides, and gives everyone a sense of cooperation. You are helping the system to run more efficiently. So, I thought about it deeply, and planned to ensure that I was ready to go the bathroom with all my bits collected together by 6.25/6.30am. If a nurse comes in by chance between 6am and 6.15am, I just ask if it would be OK to be in the bathroom before 6.30am, and did they want me to ring the bell? If no nurse came by chance, then at about 6.15am/6.20am, I rang the bell, gave them 5-10 minutes to get there and find our wardie. 20 minutes+ on the toilet (with book), 20 minute+ shower (hey, I was learning to use a wheelchair) and other things, and they were very happy for me to ring the bell at about 7.20am or a bit later to get back into bed. They come quickly, had a smile on their face (mind you they are the new morning shift), and there was never any aggro. Oh, and by that time, breakfast had arrived!
Was it my responsibility to think all that through? I think so. As I have already said, I was not ill, even if I was currently very incapacitated. The brain was still working, and eventually I fantasised I would be literally taking my life back again. I didn’t want to be too dependent on others, and dependency starts the minute you get back into bed, breathe a sigh of relief and ring the bell to get a nurse to put your PTUs on.
The problems were not yet over, of course, and I had yet to find some sort of balance for the bowel, which was now very much on the loose side. There must have been some neurological improvement; I began to get a little sharp pain in my rectum just 2 seconds before I had an accident. Mind you, I couldn’t actually stop anything. So if I was in the bathroom, having just completed my shower, I could whizz over to the toilet and start the whole process again, wait for the explosions to disappear, clean up,,, again, and then get back under the shower to ensure cleanliness.
Before this little warning sign, I would be gaily washing my hair, hear a loud explosive noise, and see a little cow pat in close proximity to the oversize shower drain. I now know why it was oversize - it was so you could sluice everything meticulously down it if you had to!
A really bad day saw me go back to the toilet twice, then get back to the shower for the third time, then go to the sink to brush my teeth and shave, only to find a little doggy-do under the chair when I looked down. The problem with this was that spray from the shower does not reach this far, so the only way I could manage was to reach down and use a paper towelette to clean it up. Of course this meant I was squeezing my tummy, so as I wheeled myself over to the toilet to deposit the towelette, I left a trail. I felt rather like a dog with worms. Anyway at this point I was exhausted, disappointed, and had lost any sense of embarrassment. So I did, for once, call the nursing staff – who were kindness itself... I don’t know what they said in the tea-room later, and I don’t really care. At that point, I just wanted someone to take over and get me back to bed.
Of course even this was problematic. I had to move the chair close to the bed and lock the wheels, get the bed height so that it was slightly lower than the arm and the seat of the chair, and manoeuvre (edge) across the chair toward the bed, lift my worst leg up onto the bed to act as an anchor, and then roll over onto the bed. On the occasion we are talking about, as I lifted myself on the armrests of the chair to get closer to the bed, there was a last mini-explosion followed by a little brown puddle on the floor under the chair by the bed. So all my cleaning was for naught; the poor nurse had to reclean my undercarriage, dry it, apply the paw paw cream to avoid bedsores, and then help with my PTUs. I just curled up, defeated, and went back to sleep.
But you can’t stay that way. You have a genuine problem, and while everyone can offer advice (medical or otherwise), at the end of the day you are the one who knows your own body, you know the feelings and warning signs you have, and it is up to you to try to take charge and work out what may be best for you. At the time of writing, I had an emerging pattern. I got little urges in the morning and tried hard to make sure I was as empty as possible as part of the morning ritual, which currently took about an hour or so. You have to put up with the numbness you get from sitting on the toilet wheelie for all of that time. You have to ask someone to double check you are clean, check for skin damage, and put some cream on to avoid sores. So far so good. You also have to have some sort of distraction – a good book, or Sudoku from the paper the day before, or some sort of word game on the iPhone. Anything to help avoid the mind-numbing boredom of spending so much time in the loo.
Finally it is worth talking about all those things that can upset a delicate pattern. Because of the injury, there are two extremes you want to avoid. On the one hand you really don’t want to become constipated. First it is very uncomfortable, second staff will insist on upping the ante until you get a result, and then you can get into a vicious cycle. On the other hand you want to avoid diarrhoea, mostly because of the loss of control; you can never quite get to the bathroom in time.
So, one of my lovely kids bought me my favourite lollies (sweets) – Licorice Allsorts. The problem is that they are addictive, so you just have to have another one… Of course licorice is an aperient. Now why didn’t I think of that when I was just having another one. Predictably the morning after we had a ginormous and unexpected result. Mmm, must remember to limit myself to one or two.
Another day Jan brought in some Sushi and some cherries. The dinner was not very appetizing again, so I was delighted to talk while we shared our makeshift dinner. Of course, too much fruit can ‘kill’ you. Again fruit can act as an aperient, especially if you gorge out on addictive cherries. I think that contributed to one of the cow pat days.
I have had a theory that I might be sensitive to the lactose in milk, and over the years, I have reduced the intake (or used lactose free milk when you can get it), and this seems to have helped to regulate my bowel habit. Of course in hospital, I returned to the habit of having 150mls full cream milk on my cereal in the morning, as well as yoghurt; I suppose just because they were available. Over the next few weeks I just assumed that my recurrent looseness and explosiveness was related to my neurogenic bowel. It took several sessions of thinking through to decide to stop the milk and yoghurt again. Hey Presto, after 3 days my diarrhoea began to settle, and my habit became more predictable to the point where I had some confidence to stop wearing the PTUs.
Finally, the problem may result from medications. Again in the past I have been somewhat sensitive to aspirin, and had had minor gastritis that could have been blamed on aspiring taken for migraines. Because the doctors believed I had had an embolus they had recommended I use a blood-thinning agent like Heparin, so I had been having injections every day. They had also been giving me aspirin every morning in the belief that it would reduce the likelihood of deep vein thrombosis. All perfectly reasonable… Except after some weeks, my stools began to get darker in colour than usual. I would not have said they were actually black or even tarry; that would have freaked me into telling a doctor (which would have led to the inevitable investigation cycle). I watched for several days, and then the story clicked in my head, and on the next day I simple told the staff I was not taking the aspirin any more because I believed it was causing some mild gastritis. There was no fuss, just some more discussion, and then aspirin was struck from the drug chart. Two days later, the colour had returned to normal, and has never been that darker colour since.
Bowels are a problem after a spinal injury and, whether you like it or not, you just have to become a stool watcher. You also have to watch the effect of diet. See, if you can rush off to the toilet after eating too may cherries the day before, it just becomes a bit of a joke. But if it takes you longer than expected to get there because of the mechanics of wheelchairs and transfers, then it is much more of a problem, and involves others to clean up the mess. You just have to give it some thought. You know your body; you know your personal history regarding what diet suits you, and what may upset you. Work it out and take charge. Only you may be able to put the jigsaw together.


  1. It is very brave of you to write about what many consider an embarrassing and taboo, yet normal bodily function, and I think an important thing that you have done in sharing this story. When people wind up in hospital with out preporation they are not thinking of anything other than their condition and what why how. The little and important things about nurses etc are far from the mind. You are an inspiration. Thank you graham.


  2. Thank you, I totally agree with Zoe, it is incredibly brave to share this umm sh*t and also important.
    So I'll be a bit brave too, I have had problems since my spinal surgery mainly with medication induced constipation etc, if I didn't have a close friend who is a disability nurse for advice etc I would have ended up in hospital at least 3 times (with a tube up my backside). At least I'm lucky that I have been able to get to the loo faster when things got moving, but also unlucky in a odd way as I can feel it and it can get to the point of utter agony (but you don't want to take your pain meds cause it might make it continue for longer - another quandary of balance), and the experience of vomiting poo is vile - has happened to me a few times.
    I am surprised at one thing though on reading; I wondered why after that 5-6 day mark (and microlax etc not working), didn't try a Fleet enema (works a treat when really desperate, and seems a bit less harsh than some things that have given me burning sensation, plus it seems to totally void the bowel).
    So glad your problems are so much better and you have balance. It has taken me a long time to find that and sometimes still have problems.
    Thank you for discussing this, it's a topic I have kept pretty quiet about myself (other than to selected significant others), you are one of the bravest and most inspiring people I've ever met :)
    Warm regards,