“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…”
Saturday, March 14, 2009
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.
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.
Now by contrast, these were my bowel movements on the Wednesday before surgery. A very different picture.
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
Medication:
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.
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.
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.
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.
Friday, January 16, 2009
New blog, kind of
Hello.
Like a ghost town round here, isn't it?
Well, I'm in a flare up again.
So I'm sort of covering it in a new blog.
It's here, if you want to take a peek.
Like a ghost town round here, isn't it?
Well, I'm in a flare up again.
So I'm sort of covering it in a new blog.
It's here, if you want to take a peek.
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