Friday, March 27, 2009

A Patient’s Handy Guide to Surviving Hospital

Slightly past its best, fallen into neglect, full of old people, knobbly knees on display everywhere, poor food, uniformed staff; despite the obvious similarities hospitals are not to be mistaken with holiday camps. The thought of going into hospital is enough to make most people feel ill. It’s not something you look forward to with relish. Even a short stay can be a boring, frustrating, distressing experience. This is no reflection on the nurses and doctors. They’re amazing. It’s just sitting around for hours on end in stiff hand-me-down pyjamas, with nothing to look forward to except the next injection in your arse and a splodge of lukewarm mash isn’t most people’s idea of fun. So I’ve put together a list of tips that might make your time in hospital a bit more pleasant. These are maybe some of the less obvious things you might not necessarily think of. If anyone else has any top tips of their own, please feel free to put them in the comments section.

Earplugs. You can get them in any good pharmacy. Essential for a good night's sleep. Unless you particularly want to listen to the agonising squeals of a 72-year-old having a catheter inserted at 3 o’clock in the morning, pop a couple of these little foam lifesavers in your lugholes.

Better than sleeping pills. Just take 2 before bed.
Keep a ready supply of chewing gum handy. After your op brushing your teeth can be exhausting. Chewing gum is a much easier way to keep your mouth feeling fresh. And if you’re vomiting a lot, you’re going to need something to take the taste away. (The same applies to hospital food.)

Make sure you’ve got plenty of change. If you’re unable to make it to the shop, then you’ll have to buy your newspapers, drinks or sweets from the trolley that comes round. They never have enough change. Try to pay with a note and they’ll look at you like you’ve just offered them a hundred trillion Zimbabwean dollars.

"Have you got anything smaller?"

Cut your toenails and fingernails. It doesn’t sound like much, but make sure before your op you give your nails a good trim, because afterwards you won’t feel up to it. I made the mistake of not cutting mine and I ended up with the kind of long creepy fingernails normally associated with strange men who live alone, talk to pigeons and never open their curtains.

Get a haircut before you go into hospital.
It’s easier to manage and it’ll just make you feel much better. I didn’t have a haircut and I ended up with the kind of long, greasy, shapeless mane normally associated with strange men who live alone, talk to pigeons and never open their curtains.

Thursday, March 26, 2009

Wednesday's diary on a Thursday 5.4

Three bag changes a day seems to be about the average now. I can live with that. The leaks aren’t such a problem now I’m using a different type of bag. Mostly I catch them before any major damage is done or the smell gets too offensive. I have fleeting moments where I feel a bit hard done by, but I have to remind myself that before I had the operation I wasn’t able to work or go out, and now I can. I guess it’s all about looking for the positives.
Wednesday 25th March:
8am Change bag
12.30pm Change bag
6.40pm Change bag

Breakfast 6 x mesalazine 400mg, 2 x prednisolone 5mg, 2 x calcichew
Dinner 4 x azathioprine 50mg
Bedtime 6 x mesalazine 400mg

Down to 1 measly 5mg of prednisolone on Saturday. I might have boiled eggs to celebrate.

Wednesday, March 25, 2009

Get creative

When I was at primary school empty toilet roll tubes, along with Fairy Liquid bottles, used cotton reels and milk bottle tops, were an essential component of any craft project. With a little imagination the humble toilet roll tube could be transformed into Roman columns, binoculars, telescopes, a haunted tower; the possibilities were endless. I remember using them to make the legs of a woolly mammoth. (Semi-interesting aside: we used old newspapers as stuffing for the main body of the mammoth, and my friend Sameer stuffed his with all the Page 3 girls. The plan being that as soon as he got it home he would open it up and remove his readymade stash of boobs. Kind of like a pornographic Trojan horse. We were 11. The last I heard of Sameer he became a doctor, so it’s good to know he continued his early interest in anatomy.) Now as anyone with UC knows we go through toilet rolls like a machine gun goes through bullets. A nice plump roll of Andrex can vanish in the blink of an eye. Which means we end up with an awful lot of cardboard tubes. If you’re feeling creative, instead of just chucking them in the recycling, you could try making them into a sculpture like the one below. Who would have thought something so elegant and beautiful could be made from an old toilet roll tube. I’m inspired. I may even attempt my own, and if I do I’ll post the results here. It’s got to look better than my wonky woolly mammoth legs.

Tuesday, March 24, 2009

A visit to the silver-tongued surgeon

My surgeon has a strong Italian accent. His English is perfect, but his accent makes everything sound, well, really Italian. And as everyone knows Italian is the language of love, not bowel diseases. The way my surgeon says ulcerative colitis makes it sound so bloody sexy. It makes it difficult to gauge the seriousness of what he’s trying to tell me. It all just sounds like poetry to my ears. I don’t know if he’s trying to explain the complexities of the large intestine or attempting to woo me. So to avoid any misunderstandings at my appointment with him yesterday I decided to concentrate really, really hard on the actual words themselves, and ignore the honey-dipped accent. This is what I think he said:

• According to the pathology results I have ulcerative colitis
• Although some bacterial tests came back suggesting Crohn’s
• During surgery they found another ulcer in my large colon, which is also more common with Crohn’s
• The rest of my large colon is relatively disease free
• There’s a chance we may never determine whether I have UC or Crohn’s
• He is going to discuss my case with the gastroenterology doctors
• There are various options available to me
I can keep the colostomy bag for life (rather not)
I can have my colon reconnected and lose the bag (sounds good)
I can have an ileostomy and have my entire large colon removed, then later on have things reconnected (uh-uh, that’s 2 more ops)
I can keep the ileostomy for life (don’t fancy that much)
• We don’t have to decide anything just yet. He doesn’t want to see me again for 4 months

I came looking for answers, but frustratingly it feels like I don’t know any more than I did the day after my operation. It’s all a bit woolly. I’m hoping that when I see my gastro consultant on Friday he has a more fixed view on things. It would be nice to hear something positive and concrete for a change instead of a list of ifs, buts and maybes. Even if it isn’t delivered with an Italian accent. Ciao.

Monday, March 23, 2009

Can you smell something?

Do you remember the story of the quick thinking little Dutch boy who averted disaster by plugging a leak in the dyke with his finger? Well given his apparent aptitude for repairing leaks, I’ve been thinking he might be able to give me some advice. I would be interested to know how the little Dutch boy would deal with a leaky bag of poo. Would he have something up his sleeve other than the old ‘stick your finger in it’ option? Or maybe he’s a just a one trick pony whose catch-all solution to leak based problems is a finger? Sadly the little Dutch boy is a 19th Century fictional character and therefore unable to give out advice, leak related or otherwise. So, yes, anyway, I am having some teething problems with my bags. I’m springing quite a few leaks. The other day I was having a cup of tea in one of those fancy cafés you find dotted along Upper Street in Islington, when the stench of poo hit my nostrils. Surreptitiously I checked my bag and my heart sank; raw excrement was seeping through my t-shirt and onto my jeans. Suddenly all the mums in the café started sniffing their baby’s bum, and shrugging their shoulders as if to say ‘not mine.’ Whilst the mums of Islington played hunt the crap, the real culprit crept off to the loo. The prospect of a leak makes any trip out more stressful than it needs to be. I don’t want to be wandering around Marks & Spencer spreading my muck about, like a Catholic priest wafting an incense burner. Imagine leaking on a rush hour tube. I’ve got a job interview tomorrow evening. Involuntarily dribbling doo-doos down my trousers isn’t going to create a good first impression. I’m seeing the stoma nurse again today, so I’m hoping we can come up with a solution. I’ve experimented with different types of bags, I’ve cut the hole slightly smaller, I’ve used those putty washer thingies, taped the edges up, and sometimes it doesn’t leak and sometimes it does. It may just be that where the bag is positioned there’s a natural crease in my belly? But for life to get back to some sort of normality I need to put an end to the leaks. And I don’t think putting a finger in it is the answer.

Warning: leakage may occur.

Saturday, March 21, 2009

That was the week that was

Saturday, 28th February

The day after the operation is hazy, obscured by a morphine fog. I am not in as much pain as I expected, but given the high doses of opiates coursing through my veins, this shouldn’t come as a surprise. I’ve got tubes up my nose, a tube coming out my pelvis, one in my arm, and one up my tadger (late 19th Century slang for penis.) I feel I now share some affinity with Pinocchio, Muffin the Mule, the cast of Thunderbirds and any puppet whose life is hindered by strings. My belly is incredibly swollen and bloated, like I’m about to give birth to a wok. Oh, and there’s a stoma bag stuck to my tum. That’s a new addition.

Sunday, 1st March

I am beginning to get an idea of what it must have been like in the 19th Century opium dens of Limehouse. Best lay off the morphine, I think. I am very weak. Even the smallest task is a massive effort. Just taking a sip of water saps me of strength. Writing a simple text requires all my concentration. And the nurse expects me to get out of bed and sit in my chair. No chance, the chair is well over 2ft away. It’d be like crossing the Sahara; I’d never make it alive. My bag is still empty, but I haven’t eaten anything to fill it since Thursday night. I have no appetite.

Monday, 2nd March

Definitely time to knock the morphine on the head otherwise I’m going to need a stint in The Priory as soon as I leave here. Nothing stronger than paracetamol from now on. Some tubes are removed, freeing me up to have a sit down shower in my en suite bathroom. I feel a bit sorry for myself perched naked on a plastic seat struggling to find the strength to even wash, and a few tears mingle in with the shower water. Catching a glimpse of myself in the mirror doesn’t help. I suddenly feel a bit young for all this. The stoma nurse shows me how to change my bag and I see the stoma for the first time. Now I definitely feel a bit young for all this. It’s not a pretty sight; an angry raw gaping oval wound, bordered with thick black stitches. I feel much less weepy once the bag is back on and covering it. Still can’t face food, sipping water is proving hard enough.

Tuesday, 3rd March

During the night the bag fills up and starts to leak gravy-like poo. All I need now is a couple of slices of bread to mop it up. I buzz the nurse to change the bag. I’m not quite up to that particular task just yet. The smell really is unpleasant. Defintely not an 'Aah, Bisto...' moment. As the nurse gently cleans me up, for about the millionth time I marvel at what an incredible job they do. Nurses are amazing. Fact. Every morning 3 magpies visit me outside my window: ‘1 for sorrow, 2 for joy, 3 for a girl.’ After the magpies, it’s the turn of the doctors: ‘1 for optimism, 2 for doubt, 3 for hovering at the back with a clipboard.’ The surgical team are pleased with my progress and want to get me home on Friday, the gastro lot still aren’t convinced I’ve had the correct operation. I’m with the surgical team on this one.

Wednesday, 4th March

Since the operation I’ve not been able to read, listen to music, watch a DVD or write. I can’t concentrate on anything. As a result time really drags. Shaving my beard off uses up half an hour, 3 disposable razors and quite a lot of my strength. But it’s worth it; I no longer look like Rasputin’s scruffier brother. Under the supervision of the stoma nurse I change my bag for the first time. Some poo oozes out of the stoma and lands with a schlopp on my slippers. Suddenly the realities of life with a hole in my belly start to sink in. My stomach also feels painful and blocked up. The nurses encourage me to walk around, but I have no strength. I need to eat something to give me energy. Asparagus soup probably isn’t the wisest choice, and I’m soon filling a yellow bowl with green sick. An anti-sickness injection perks me up and I spend an hour jabbering on the phone to my girlfriend about my future world domination. Aren’t drugs marvellous?

Thursday, 5th March

Why do drugs have to wear off? I feel rubbish and the stoma nurse agrees I look rubbish. She’s has serious doubts that I’m ready to go home. There is some speculation that I may have the Chestnut Ward diarrhoea bug. I have a temperature and I continue to regularly fill my yellow bowl. Late afternoon I drift off into a deep sleep and a few hours later I awake a different man. I feel much, much better. My mum has since claimed my recovery was an act of God, as she had been praying for me Thursday afternoon. So with the good Lord apparently by my side, I take a stroll around the ward. The nurses look genuinely pleased to see me up and about. Praise be, I am a modern day Jesus returning from 40 days and nights in the wilderness. Or something.

Friday, 6th March

I am well enough to be moved out of my room and into Primrose Ward proper. The doctors agree I can go home Saturday. And in what feels like something of a turnaround my gastro consultant now thinks the surgeons were right to give me a colostomy instead of an ileostomy. I hope he’s right. After my first breakfast in a week I walk to the shop and buy some sweets and a magazine. My last day is uneventful. I know there’s still a long way to go, but for the first time I feel like I’m heading in the right direction. My bag is working properly and I’m getting the hang of emptying and changing it. After 2 weeks I’m ready for my own bed.

Saturday, 7th March

My parents arrive in the morning to take me home. We step out of Whipps Cross into a bright Spring day. My mum and dad carry all my stuff leaving me with just the one bag; the one on my stomach.

Thursday, March 19, 2009

How much would you like to give gastroenterology this as your address?

Passage would have been so much better than Road. You’d have to live at number 2, wouldn’t you?

Wednesday's diary on a Thursday 5.3

I’ve been living with the bag now for 3 weeks, and even though it can sometimes be a bit of a hassle, it’s a million times better than the pain, inconvenience and stress of a full on ulcerative colitis flare up. It feels like I’m back in control of my life.
Wednesday 18th March:
5.30am Empty bag
8.30am Change bag
11.20am Empty bag
3pm Empty bag
4.45pm Change bag

Breakfast 6 x mesalazine 400mg, 4 x prednisolone 5mg, 2 x calcichew
Dinner 4 x azathioprine 50mg
Bedtime 6 x mesalazine 400mg

Noticed that the mesalazine tablets often end up in the bag whole before they have been properly digested. Don't suppose that's such a good thing? Down to 4 prednisolone tablets now and will drop to 2 on Saturday.

Wednesday, March 18, 2009

Sod's Law

Sod's Law
a facetious or satirical proposition stating that if there is a possibility for something to go wrong, it will go wrong.

On Chestnut Ward I am pretty much the only patient who reads. No one else really bothers with books or newspapers. Naturally I also happen to be in the only bed with a lamp that doesn’t work. So when the lights go out at 9-ish I can no longer read.

After waiting a week for maintenance to fix my lamp, they finally turn up on the morning of my operation. Of course this is the day I am due to leave Chestnut Ward.

I am in hospital with a disease that means I spend a ridiculous amount of time on the toilet. What would be great right now is an outbreak of a highly contagious virus with symptoms that make you spend a ridiculous amount of time on the toilet. Cue diarrhoea on Chestnut Ward.

The anaesthetists really sell having an epidural to me, can’t recommend it enough, it’ll be far better post-op, they say. Obviously they’ll fail to find the right spot to give me an epidural. That’ll be the not so good anaesthetic post-op for me, then.

I go to theatre to have an ileostomy, I come back having had a colostomy.

For 4 years I have been treated for ulcerative colitis. Well bugger me, turns out I might have Crohn’s.

Now I don’t think I’m being overly paranoid here, but I do have my suspicions that I may have fallen foul of Sod’s Law. Not just once, but on a few occasions. I’m not looking for sympathy, but to say I haven’t had the best of luck wouldn’t be entirely inaccurate. But every run of bad luck must come to an end. And so it has for me. Finally something has gone in my favour. Because I may have come into contact with the infamous Chestnut Ward diarrhoea bug I’ve been given my very own room. My very own en suite room no less. So for the duration of my recovery I have the luxury of complete privacy. Which is just as well, because to be honest I look a mess. My hair is a tangle of greasy curls, I have a week old beard and the body of Brad Pitt; that’s Brad Pitt playing the part of the ancient and decrepit Benjamin Button in The Curious Case of Benjamin Button. I also think that in a certain light I bear a passing resemblance to Lindow Man, that Iron Age fella they found preserved in a peat bog. It’s best for everyone I’m kept out of view. It also allows me to projectile vomit bright green bile without fear of splashing anyone. I don’t know it yet but the week following surgery is going to be one of the longest and most difficult of my life. I’m just thankful that Sod’s Law gave me a break and let me suffer it in my very own little room.

Me post-surgery. I'm told some weight loss is to be expected.

Tuesday, March 17, 2009

The post-op post

Morphine hits the backs of the legs first, then the back of the neck, a spreading wave of relaxation slackening the muscles away from the bones so that you seem to float without outlines, like lying in warm salt water. As this relaxing wave spread through my tissues, I experienced a strong feeling of fear. I had the feeling that some horrible image was just beyond the field of vision, moving, as I turned my head, so that I never quite saw it. I felt nauseous; I lay down and closed my eyes. A series of pictures passed, like watching a movie: A huge neon-lighted cocktail bar that got larger and larger until streets, traffic, and street repairs were included in it; a waitress carrying a skull on a tray; stars in the clear sky. The physical impact of the fear of death; the shutting off of breath; the stopping of blood.
William S. Burroughs, Junkie, 1953

Like those wobbly video images of UFOs that change directions at impossible speeds, I take off vertically, propelled to a dizzying height in seconds; fear closes in, I know what’s coming next…with sickening inevitability I drop out of the sky, the ground hurtles towards me, though I stop dead before impact. A gust of wind carries me away; I am a snowflake amongst millions of snowflakes, fluttering, the ebb and flow of the breeze teasing us onwards. There are throngs of happy people in a park; evil infiltrates them, a menacing gang of hoodies fan through the crowd…It’s dark and I am flying through the air once more, this time inches above a road surface, I am going to crash headlong into the twisted metal of a car wreck, nothing can prevent the nauseating crack and crunch as my skull fractures into tiny pieces, flesh torn aside, blood vessels popping like cooking fat, haemorrhaging fast. The road feels neither hard nor cold beneath me, I am weightless, lifeless; a girl in an ankle length nightdress stumbles into the path of an oncoming lorry, caught in the headlamps, she is going to be hit…

I come round from a terrifying morphine dream in an unfamiliar room. Time has no meaning. Through the haze I remember being shown how to administer morphine by pressing a green button dangling above my head; I reach up and give myself another shot. I don’t know how many times I’ve repeated this action. I’m am hot, my mind races feverishly, sleep comes and goes.

A surgeon is explaining to me that they didn’t carry out the ileostomy as planned. During surgery they discovered a fistula in the colon. The colon wall was perforated. An abscess was mentioned. The surgeons felt strongly that it was more likely to be caused by Crohn’s than ulcerative colitis. So instead of taking my entire large colon out, they just removed the section most badly affected. Apparently the rest of my colon looked fairly healthy. All I want to hear is that the operation has been a success. The surgeons are confident they did the right thing. One thing is for certain no amount of drugs would have ever cleared up the fistula. Surgery was the only option.

A member of the gastroenterology team is shaking his head. He is convinced I have ulcerative colitis, not Crohn’s. If this is the case, I now still have a large part of my large colon, which can be attacked by UC at any time. Ulcerative colitis only affects the large colon, so if you take it away, you take away the UC. (Just like a man who has had his foot amputated needn’t worry about getting an ingrown toenail.) The gastro doctor thinks I should have had an ileostomy. In his eyes the surgeons have only half finished the job. This is not what I want to hear.

So it seems my bowels have split the medical profession into two camps. The surgery team thinks I have Crohn’s and the gastro team is sticking with UC. If I have Crohn’s then in the future there’s a possibility that it could come back at any point between my mouth and anus. And if it’s ulcerative colitis, well, that can come back too. Not exactly what you might call a win win situation.

It’s right about now I start vomiting green bile.

Monday, March 16, 2009


“Has anyone spoken to you?” asks one of the gastro doctors. “No,” I reply, my curiosity mildly aroused. “Ah, typical, always the last to know, eh,” he says wearily, “well the powers that be don’t want your operation to go ahead today because of the diarrhoea outbreak. They don’t want anyone who may have come into contact with the virus spreading it around the hospital.” This isn’t good news. It’s midday on the day of my operation and I’ve been waiting to go down to theatre since 9am. I’ve also been on nil by mouth for over 12 hours. I am so thirsty I wouldn’t hesitate to lick dog piss off a nettle. “When will you know if it’s on or off?” I croak. “We’re waiting to hear, it’s still our intention to operate today.” It turns out that if the hospital bureaucrats do scupper my op the next available slot won’t be until the following Wednesday. That would mean another 5 nights in hospital. 5 nights will the operation hanging over my head. The doctor tells me to sit tight and not to eat or drink anything. “Cop hov tay? Cop hov coffay?” cries the African tea lady right on cue. Typical. I hear her long before she lopes into view. The tea lady is a tall, upright woman with strong features, topped off with a mass of red tinged hair that could pass for a cheerleader’s pom-pom. “Cop hov tay?” she barks at me. Forlornly I point at the letters scrawled on the wipeboard above my bed: NBM. No ‘cop hov tay’ for me. No bloody operation either.

A nurse is expertly tying up the back of my gown. Suddenly it’s action stations. This is it, it’s 2.30pm and two porters are ready to take me to theatre. There’s a sense of urgency in the air. As my bed is wheeled out of Chestnut Ward the nurses all wish me luck. I rest my head on my pillow and watch the ceiling pass by above me. We descend in a lift before making our way onto the main corridor. The air is cooler here. Before long we turn left into a waiting area near the theatre. Some people in blue surgical suits introduce themselves. They speak softly, calmly. I don’t remember their exact jobs. Anaesthetists, maybe? I’m looking forward to being put to sleep. Now I’m being wheeled into a small room, which is packed with more blue people. A male blue person explains they’re going to give me an epidural. This will make things a lot less painful post-op apparently. I’m told to sit on the edge of my bed, my feet are placed together on a stool and I relax my shoulders letting my arms hang loosely beside my legs. I feel a prick as a local anaesthetic goes into my lower back. Fingers then begin kneading and pushing at my vertebrae. I think something is inserted into my spine. It’s uncomfortable more than painful. There’s a lot of wiggling about. And some sighs. I get the impression all is not going to plan. I try to take slow regular breaths. “Okay, we’re having trouble finding the right spot, so I’m going to have another go,” explains a voice from behind me, “just try to relax.” Sharp prick as another local anaesthetic goes in, followed by more spine wiggling. The huffing and puffing behind me grows louder. “Right, I think we’ll just let my colleague see if she can get it in the right place, and if not we’ll use something else.” Boy, am I glad I can’t see what’s going on behind my back. A smaller pair of hands begin to prod my back. Something is pushed into my spine, a needle, a tube, a stick of liquorice, I don’t know. Ah, ignorance is indeed bliss. After 10 extremely uncomfortable minutes the anaesthetists throw the towel in and admit defeat. I won’t be having an epidural after all. Personally I don’t give a damn. I just want to be unconscious. Fast. And a moment later that’s precisely what happens.

Sunday, March 15, 2009

Little black circles

It’s Thursday and Chestnut Ward has a giddy, holiday camp atmosphere today. The nurses are all happy and relaxed. It turns out there has been an outbreak of diarrhoea on the ward, which means no more new patients can be admitted until the danger has passed. So when a patient is discharged, no one replaces them. Out of 20 beds 9 now lie empty. The diarrhoea has almost halved the workload. One nurse can’t stop giggling, which is slightly unnerving when she’s injecting you in the stomach. “It’s amazing, it’s so quiet, it’s so nice, I’m so happy,” she chuckles, shaking her head like she can’t quite believe it’s actually happening to her. I too can share some of her joy, 9 fewer snorers, sleep-talkers, coughers, whiners and whingers means more undisturbed sleep for me. Who’d have thought a dose of the trots could spread so much happiness.

The stoma nurse is holding a flaccid flesh coloured bag thingy against my stomach. She moves it up a bit, down a bit, leans back a bit, squints a bit, and ask me how it feels for size. For a moment it’s like being measured up for a suit. I half expect the stoma nurse to have a mouthful of pins. She doesn’t, but she does have a big, black marker pen, which she uses to draw a circle on my tummy where the bag had been positioned. “This looks about right,” she says, admiring her work. The black circle is about the size of a 2p piece, and as I look down at it, sits about 3 inches to the right of my belly button. It’s there to show the surgeon where to put my stoma. The stoma, I have just been told, is what they call the opening that will be created through my stomach. My new bumhole, basically. Creating a stoma here is called an ileostomy, which is the operation I am having tomorrow. Yes, THE OPERATION I AM HAVING TOMORROW. As the week has gone on, it has become clear that surgery is really my only option. I’ve been back on intravenous steroids for 6 days now, and frankly, if they pumped Bovril into my veins it would probably be as effective. I’m on maximum doses of all my medication and I’ve seen maybe a 20% improvement. Not enough to escape the knife. No one has put any pressure on me to go through with the op. The gastro team and the surgeons have allowed me to reach my own decision. To be honest though, I decided a while a go to shirk all responsibility and leave matters to my body. My body has, after all, been in control of me for nearly 4 years now. Like it or not I have no control over it. I don’t seem to have much influence in the health department. I’m powerless to my body’s whims, if it chooses to flare up, well, there’s not a lot I can do about it. Drugs or no drugs. So, I passed the buck. I decided that if my body responded to the drugs, then great, I could go home with all my internal bits intact, but if it didn’t, then okay, I’d have the op. True to form my body let me down. Which is why a nurse is currently scribbling on me. Worryingly she has now drawn a second circle 3 inches to the left of my belly button. Surely 2 new bumholes is a bit excessive? Sensing my concern the stoma nurse explains that it’s not always possible for the surgeon to put the stoma in the intended place, so as a back up she’s marked up a second spot. Best to cover all eventualities, she reasons. A waterproof dressing is placed over each little black circle to stop them rubbing off, and that’s it, I’m ready. Ready for THE OPERATION I AM HAVING TOMORROW.

My stomach shortly after being measured up to be converted into a radio. Volume control will be on the left, the tuner on the right.

Saturday, March 14, 2009

Enemas and endoscopies

“I’m alright, I’m alright, I’m alright, I’m alright, I’m alright, I’m alright, I’m alright, I’m alright…” chants the skinny old man two beds down. He’s lying on his back hugging his knees right up to his chest repeating the same trancelike mantra over and over. “I’m alright, I’m alright, I’m alright, I’m alright, I’m alright…” Personally I think he’s kidding himself. I’m no expert, but curling oneself up like a ladybird on its last legs and muttering, “I’m alright, I’m alright, I’m alright…” suggests precisely the opposite.

All those hours of sprint training on the rugby training ground as a schoolboy are suddenly paying dividends. As a fledgling fly-half it was drilled into me that it was all about the first 10 yards. I needed to be explosive. Well if my old coach could see me now, I think he’d be proud. My arms and legs are pumping hard, powering me down the full length of the ward towards the toilet. Behind me, slightly obscured by the whoosh of air buffeting around my ears, I can just make out the Sister’s voice ringing in my ears, “You can do it here!” By do it here she means do a poo. Seconds earlier she administered a particularly effective enema up my bum. Now, I may well be far less embarrassed about all things bum related than I was 3 years ago, but I draw the line at projectile pooing blood, shit and God knows what all over the bed in front of the Sister and a young Polish student nurse. Do it here indeed, I have my standards. So I opt for the 40-yard dash to the toilets. I make it with no time to spare. The instant my bum cheeks make contact with the toilet seat I spray the bowl with a full on torrent of nastiness. Imagine opening a shook up bottle of fizzy Cherryade. My whole body is trembling with the sheer force of it. And Sister wanted me to do this is my bed? The blast would have ripped the goddamn curtains clean from the railings, plastering everything in 10-yard vicinity with shit. They would have had to hose clean poor old Mr Stout in the bed opposite. And in his condition I’m not so sure he’d survive the ordeal. Weak-kneed and drained of all colour I am now ready for an endoscopy. Technically and medically speaking I’m ready, but mentally I don’t think one is ever quite prepared for the paparazzi to go up your Gary Glitter.

“I’m alright, I’m alright, I’m alright, I’m alright, I’m alright, I’m alright, I’m alright, I’m alright…” This time it’s not the skinny old guy two beds down chanting, it’s me. I’m in an endoscopy room watching a TV monitor showing a camera snake it’s way up my colon. It’s not just uncomfortable viewing, it’s plain bloody uncomfortable. Which is why I have adopted skinny old guy’s mantra for my own. “I’m alright, I’m alright, I’m alright, I’m alright…” I figure there’s no time like a live broadcast of your guts to try out the power of positive thinking. As I watch the camera slide past the blotchy, blobby, maggoty sections of bowel inflamed with ulcerative colitis it occurs to me that every meal I have ever eaten in my life has passed through this way. My Dougal from The Magic Roundabout birthday cake I had when I was 4, the lamb doners the kebab van man in High Wycombe, would sell me for whatever money I had left in my pocket at the end of the night, my mum’s toad-in-the-hole, all those life affirming scotch eggs (yes, a good scotch egg can be life affirming), they would have all made this journey. And very soon, if I have the op, no food will ever travel this way again, because the section of bowel I’m watching on the screen will no longer be there. I find the whole thing oddly emotional, like a sad farewell to a friend. “I’m alright, I’m alright, I’m alright, I’m alright, I’m alright…”

Thursday, March 12, 2009

Life on Chestnut Ward

One by one the strip lights flicker out and an anaemic gloom descends on Chestnut Ward. Welcome to the twilight zone. Night time on Chestnut Ward is fun time. This is when the Chestnutjobs come out to play. Shadowy figures begin to rise shakily from their beds like ghosts from the grave. Patients who haven’t so much as farted all day suddenly come round from their comatose state and seemingly decide now would be a great time for a moonlit stroll. And so there are now 3 or 4 translucent skinned, pot-bellied, raggedy bearded and toothless ill men cantering about the ward like zombies in the paddock before some sort of Living Dead Grand National. Some are silent, others more vocal. One, a wild-eyed, powerfully built Charles Manson lookey-likey called Andy is muttering to no-one in particular, “In this country one must have a television license, it’s the law, one must, must, must have a license if one has a television, in this country.” I predict that if Andy were employed by the Television License people to go round knocking on the doors of license evaders they would no longer have a problem. A nurse is now gamely attempting to round up the night prowlers and steer them back to their respective beds. Andy plants himself cross-legged on the floor, refusing to budge. Demonstrating what can only be described as 360-degree owl-vision the nurse somehow manages to spot one of the patients making a break for the exit behind her back. She sprints out of a deft spin and covers the length of the ward just in time to turn the patient round by the shoulders and guide him back towards his bed. I’m enjoying the show. Patients are stumbling off in all directions. All it needs now is for Mike Read to come on and shout, “Run around now!” No sooner has the nurse got one patient back in bed then another gets out again. It’s basically a plate-spinning act with sick people. And I’ve got a ringside seat. Say what you like about the NHS, but I bet you wouldn’t get this with Bupa. Andy’s sit-down protest climaxes with a bestial wail right out of Hammer House. Classic. Sedatives are administered and relative calm falls once more on Chestnut Ward.

Sick men seem to fear the night. When the lights go out it’s like they suddenly regress through time to that age when the bogeyman posed a very real, although entirely imaged threat. Darkness has an almost instant effect on them. They become children. It’s not unusual to hear barely concealed sniffles emanate from the darkness. There are agonising cries, trembling howls and snotty, wobbly-lipped hollers. Gut wrenching pleas of “Nurse, nurse!” and “Help me, please!” punctuate the night. The dark seems to magnify their pain, almost as if losing their sense of sight causes their other senses to overcompensate. Or maybe the darkness just reminds them too closely of the inevitable extinguishing of life’s light? It may be a case of the Grim Reaper replacing the childhood bogeyman. At the far end of the ward a nurse lit by the yellow arc of an angle poise lamp tends to a patient. It looks like a scene captured in an Edward Hopper painting. The hours of darkness for me are a patchwork quilt of snatched sleep, trips to the toilet and long periods where my mind, like an obstinate teenager, seems dead set on staying awake. This is when my thoughts turn to the possibility of the operation, of what life would be like wearing a poo pouch, how much pain I can expect, will I have to wear baggy clown clothes and other more general ruminations on my own intestines. Not so much navel gazing, but gazing past the navel to what lurks beneath. I also compose whole paragraphs in my head, some of which even see the light of day, like the one you’re reading now.

Wednesday's diary on a Thursday 5.2

I thought I’d continue Wednesday’s Diary on a Thursday, just to keep a record of my new toilet regime. Obviously now I have the bag things are different. My internal plumbing means I no longer poo in the normal way. The back door, so to speak, is no longer in use. But usually about once a day I do still feel the need to open my bowels. All that comes out is a very small amount of egg-white mucus and some putty coloured stuff. I’m told this is normal. There’s no pain, no urgency, I’m in control, and it’s all over in a jiffy. Which just leaves the emptying and changing of the bag. If the stool in the bag is loose enough I can simply empty it out the bottom, which takes no time at all. But if it’s more solid I have to change the bag and at the moment that might take me 10 minutes. As my confidence grows and with more practice I’m sure I can do it quicker. So, let’s have a look at WDOAT. How exciting.
Wednesday 11th March:
4am Empty bag
6.40am Bowel movement
9am Empty bag
2.30pm Change bag
3.40pm Empty bag
9.20pm Empty bag

Breakfast 6 x mesalazine 400mg, 6 x prednisolone 5mg, 2 x calcichew
Dinner 4 x azathioprine 50mg
Bedtime 6 x mesalazine 400mg

Now by contrast, these were my bowel movements on the Wednesday before surgery. A very different picture.
Wednesday 25th February:
3.20am Loose, blood
6am Watery, blood
7.50am Blood
10.20am Loose, blood
12.40pm Loose, blood
1.50pm Loose stool
3.30pm Loose stool
7.10pm Blood, mucus
9.45pm Blood, mucus

Wednesday, March 11, 2009

Name, rank, number and a visit from the surgery team

I give my address, date of birth, next of kin, nationality, occupation, and with a big cheesy gnash, confirm that yes, I do have all my own teeth. I know the drill and as the nurse goes through the admissions form I try to keep the smartarse answers to a minimum. She’s heard them all before. The nurse asks me if I have a hearing aid and it takes every ounce of self-control to refrain from saying, “Pardon?” Mentally I pat myself on the back and wonder if she’s aware of the pure comedy gold I’m holding back solely for her benefit. A young male nurse who remembers me from before comes over to shake my hand. Others nod friendly hellos as they pass by. It’s all very chummy in a slightly back to school kind of way. And judging by the winks and smiles coming my way I am no longer the new boy. Nope, I’m one of the old faces now, one of the lads, one of the Crazy Chestnut Ward Gang. The nurse finishes inserting an IV drip into the back of my left hand and leaves me to unpack my stuff. My stuff consists of 1 towel, 5 pairs of boxer shorts, 3 pairs of big socks, 1 pair of pyjama bottoms, 4 t-shirts, a warm cardigan, a wash bag containing toothbrush, toothpaste, shampoo, shower gel, hair wax, roll-on deodorant and a disposable razor. Most importantly amongst my belongings are my MacBook, headphones, mobile phone and charger, the complete Blackadder DVD boxset, Graham Greene’s Brighton Rock, Ten Story Love Song by Richard Milward and a biography of my second favourite British writer, Alan Sillitoe. I also have my diary, a Moleskine notebook and two Edding 55 fineline pens. All packed with the intention of keeping boredom at arm’s length for the duration of my stay. Worryingly by the time I’ve stowed them away in my bedside cabinet I am thoroughly bored. I fiddle with the sliding latch on one of the cabinet doors for a bit. Another 23 seconds positively fly by in a blur.

It’s late Friday afternoon and my surgeon is sitting at the end of my bed. Tall, dark with Mediterranean good looks, he looks like a leading man on an Iraqi version of Crossroads. “If it came to surgery how do you feel about that?” he asks. “I’d rather avoid it if I can,” I reply, trying to form a sentence that suggests I’ve actually given the matter some serious thought. I haven’t, of course, because I’m still clinging to the belief that surgery is what happens to other people, not me. “But I have heard that the operation can be quite successful and that would be the end of my UC for good?” I add. “And do you know what the operation involves?” Unspeakably brutal pain akin to medieval torture comes immediately to mind. Deep breath, “You remove part of the bowel and I’m fitted with a bag, then a few months later you reverse things and I won’t need the bag anymore?” Get me, Mr Amateur Surgeon. “That’s right,” says the only professional surgeon amongst us, “we remove part of the large colon and fit you with a colostomy bag, which most patients find makes them feel much better almost straight away. Some people even get on with the bag so well they decide to keep it and not have a pouch fitted.” What some people? He must mean the crazies. Surely sticking with the bag is like sticking on 13 in a game of Pontoon? Why would anyone in their right mind want to keep the bag? We’re not talking Louis Vuitton here, let’s not beat about the bush, this is a bag of shit on the outside – which is so obviously not the correct side – of your body. “But after a few months I could have the bag removed, right?” I insist, just to make sure he’s in no doubt as to which camp I’m in. Best plant that thought into his head early on. Set my stall out from the off, I reason. Don’t want him thinking I’m one of those bag-carrying freaks. I ask how much time I can expect to be off work and the surgeon explains how I would maybe need 4 to 5 weeks to recover post-op. Then I would have the bag for a few months until I’m strong enough to have the second operation. Start to finish he reckons I’d be looking at about a year. 2009 is suddenly shaping up to be a memorable one. Which makes me faintly nostalgic for 1993, a year in which literally nothing interesting happened to me at all. Seriously, nothing.

Tuesday, March 10, 2009

Whipped into Whipps Cross

“Well, we’re going to have to bring you in again, mate,” says my gastro consultant gently. “You’re not responding to a really quite hefty dose of drugs, so we should get you back on the intravenous.” It’s Friday 20th February and I’m in outpatients at Whipps Cross University Hospital for my 10.25am appointment. As my doctor taps an extension number into his desk phone, he casually enquires over the rim of his designer glasses whether anyone has ever talked to me about the possibility of surgery. “I think it’s maybe time we got the surgical team to see you,” he says before directing his attention to the person on the other end of the line, leaving the word ‘surgery’ searing into my brain. Surgery has been mentioned before, but for some reason it never really felt like it directly applied to me. Surgery is something that happens to other people. Surgery is for people who have had ulcerative colitis all their life. It’s the final throw of the dice. The last resort. And in UC terms I still consider myself a rookie. Surely it’s too soon for the last resort? With a sympathetic smile the doctor says, “So if you go home and get your stuff and then make your way to Chestnut Ward for early afternoon. The surgical team will be expecting you.” Christ on a bike, I’m being fast-tracked.

A quick bus ride later and I’m ambling home with a comforting Greggs Steak Bake clutched in my hand. I pack my bag and call a minicab.

Gospel music blares loudly from the minicab stereo promising to deliver me into the arms of angels in the Glorious Kingdom of Our Lord. Bit of an over claim I think to myself as the taxi drops me off at the extremely terrestrial and un-holy looking main entrance of Whipps Cross University Hospital. As I suspected there are no angels to greet me either. I make my way inside through the automatic doors, which cause me to briefly wonder whether high above in the Glorious Kingdom of Our Lord, has Saint Peter’s Gate succumbed to progress and gone automatic yet or is it still the old fashioned manual type? I imagine something mock antique kitted out with all the latest electronic security gizmos. The kind of gates you’d find outside one of the Beckham’s homes, probably. If the purpose of gospel music is to make the listener reflect on all things heavenly, it’s worked a treat on me. Halle-bloody-lujah.

Once inside the hospital direction signs come at you from every direction. It gives you the impression that any location in the world can be reached from this point; A&E, X-Ray, Cardiology, Outpatients, Clapham Junction, Wigan Pier, The Moulin Rouge, The Hanging Gardens of Babylon. I ignore the direction signs because I know exactly where I’m going; Chestnut Ward, Junction 3, straight up the stairs. This is to be my second stay here in under a month. Chestnut Ward is a large old-fashioned ward, which holds 20 beds, 9 along the right and 11 down the left. The beds on the right are colour coded red, and on the left, blue. I report to the nurse at the front desk, who doesn’t seem at all convinced I am what I say I am, a patient. This happens quite a lot because unlike most patients in Chestnut Ward I don’t actually look like I’m in any danger of croaking it before crumble and custard is served at dinner. I am pretty certain I’m the only one on the ward in possession of my own teeth. The nurse points me in the direction of bed number 4 (colour coded red) still eying me suspiciously. As I make my way to my bed I consider trailing my leg and hunching my back for full invalid effect, but instead I stride manfully across the ward with my bag slung across my shoulder like a stout-hearted sailor on shore leave. I feel like a fraud. I take a moment to scan the ward for familiar faces. Only a poor Indian guy appears to remain from my time before. I throw my stuff on the bed and take a seat in my bedside chair. Here we go again.

Monday, March 9, 2009

Only me

On Monday 26th January I was admitted to hospital in an attempt to bring my grumbling ulcerative colitis under control.

It had some success and after six days I was allowed home.

Unfortunately once off the intravenous steroids things soon deteriorated.

I was going to the toilet ten plus times a day, three or four times during the night. It was exhausting and kept me under virtual house arrest. I’ve not been able to work so far this year.

So on Friday 20th February I was admitted to hospital for a second time.

This time the intravenous steroids had even less effect.

It soon became apparent surgery was very much on the cards. It was increasingly looking like the only option.

And on Friday 27th February that’s exactly what happened.

I went to theatre for an ileostomy.

Some time later, many, many wibbly-wobbly, woozy hours later I awoke to be told I’d had a colostomy instead.

Now I am learning to live with a stoma or colostomy bag or poo holster or whatever you want to call it.

I came home on Saturday 7th March.

Keeping this blog throughout my previous flare-ups really helped me keep sane, so I’m going start writing again. There’s a lot to talk about, and no doubt there’ll be a few ups and downs.

But hopefully it will prove to be the final chapter of my UC story.

If you’re new to Number Twos, welcome, and if you’re an old reader, glad to have you back.