Forewarned is forearmed.
Proverb. If you know about something in advance you can prepare for it.
An oncoming car flashing its lights to alert you to a police car up ahead; a colleague advising you never to present anything to your boss after lunch because he’ll be drunk; a girlfriend warning you she’s allergic to flowers. Forewarned is forearmed. Be prepared. Knowledge is power. Forewarned is forearmed. Fantastic. But there are times when it’s better not to know what’s coming up. Like when you’re in hospital. In my opinion there’s no advantage in knowing what an epidural needle looks like. Do you really need to know how big it is and where exactly they’re going to put it? Personally I don’t. What you don’t know can’t hurt you is my motto. When I’m in hospital I have a simple set of rules I stick to: don’t look, don’t listen, don’t ask. I’ve had a catheter stuck up my winkie, but I couldn’t describe it to you if my life depended on it. I haven’t the faintest idea how big the tube is, how far inside it goes, or where it goes when it’s up there, because I wasn’t daft enough to look and I didn’t ask. So I don’t have to worry about the next time I have one fitted because I haven’t got anything to focus my worry on. I’ve got no reference point; it could be a length of garden hose or made of cut crystal for all I know. Ignorance is bliss. I never look when they take my blood either. There are some things my eyes just don’t need to see. What good does it do you knowing? Why torture yourself? If I’d known in advance they were planning to try and give me an epidural I’d have done a runner long before I got to theatre. I’d be on a beach in South America with a new identity right now. Maybe this all sounds a bit cowardly, but we’ve all got our own way of dealing with things, we all have our own survival mechanisms. And my particular game plan is to avoid knowing anything. There is one exception though, if the anaesthetist is related to Harold Shipman, I’d quite like to know up front.
Saturday, April 11, 2009
Thursday, April 9, 2009
Wednesday's diary on a Thursday 5.5
Look what I did yesterday.
Wednesday 8th April:
4am Empty bag
7.30am Empty bag
9.45am Empty bag
3pm Change bag
Medication:
Breakfast 6 x mesalazine 400mg, 1 x prednisolone 5mg, 2 x calcichew, 2 x antibiotics
Dinner 4 x azathioprine 50mg, 2 x antibiotics
Bedtime 6 x mesalazine 400mg, 2 x antibiotics
Comments:
One of my antibiotics is round, the other is oblong, and if you don't swallow them quick they leave a nasty taste in your mouth like hairspray. Yes, I know what hairspray tastes like.
Tuesday, April 7, 2009
The not so great escape
Tuesday 31st March to Friday 3rd April
There is no rousing music. No crowd gathers to greet me. No one throws me a baseball mitt. But as I walk back into Primrose Ward I do, just for a moment, feel a bit like Steve McQueen in The Great Escape. And like the Cooler King I even end up in the same old room. The very same four walls I escaped from less than a month ago enclose me again. Standing between me and freedom is a nasty pus-filled infection. Give me German guards any day; at least they might give you a bit of chocolate.
A cannula is inserted into the back of my hand and a line feeds the clear icy liquid into my veins. I shiver and pull the blanket up to my chin. I am asleep before the last drop of antibiotics filters into my bloodstream.
I have my usual hospital breakfast; cornflakes with hot milk and sugar, slice of brown toast and a cup of tea with one sugar. For some reason I have a sweeter tooth when I’m in hospital. My Italian surgeon arrives with an entourage similar in size to President Obama’s. Incredibly they all manage to squeeze into my room. The surgeon asks to see my stoma, which means taking my bag off. With the bag removed I suddenly feel very naked and embarrassed, vulnerable even. A couple of the junior doctors shuffle round to get a better look. My head buzzes. It’s an odd sensation having a roomful of people looking at a hole in your belly. I stare straight ahead out the window and pray my breakfast doesn’t decide to drop out my stoma now. The surgeon gives the inflamed area a cursory prod and hands me a dressing to hold over the stoma. I feel more comfortable covered up. It’s decided I am to remain in hospital until the antibiotics have cleared up the infection. If I’m lucky I might be out Sunday.
Time in Primrose Ward is measured not by the tick-tick of the clock, but the drip-drip of the antibiotics. The swelling has reduced considerably and I no longer feel headachy. I’m on the mend. But this is one stay in hospital too many for my patience. Nothing I do can relieve the boredom. I just want to go home.
“I’ve had a conversation with the pathologists and they say you have ulcerative colitis,” says the Italian surgeon. “Yeah?” “Yes, it is ulcerative colitis for sure, not Crohn's” he confirms with the tiniest hint of a smile. Well, well, well, what a turn up, surgery, pathology and gastroenterology all in agreement. The surgeon continues to talk but I am no longer listening. He may as well be singing this for all I care. I lean back in my hospital chair, simply happy in the knowledge that I have ulcerative colitis. Again.
It’s Friday and I’m told I can go home. As I leave Whipps Cross for a third time I think back on the last few weeks and it occurs to me that Crohn’s and UC are the Ant and Dec of bowel diseases – a pain in the arse and really hard to tell which is which.
Familiar faces, familiar places
Monday 30th March
My GP is examining the inflamed area to the left of my stoma. The inflamed area to the left of my stoma is new. It’s red and angry looking, the skin taut and shiny, solid to the touch. It reminds me of the old cricket ball my dad kept under the stairs when I was growing up. “Okay, you can do yourself up and take a seat,” the doctor says, washing her hands. “I’m going to make you an appointment to see a consultant at A&E.” A&E. That means Whipps Cross. Hospital. Again. “You might have an abscess, which would explain why you’re feeling so bad.” The doctor makes a phone call and an appointment is made for 4pm the next day. A&E. Whipps Cross. Again. Once more unto the breach, dear friends…
Tuesday 31st March
The screams are coming from a few cubicles down. I can’t imagine the level of pain that could cause such a full throttled scream. This is what it must have been like in operating theatres before the invention of anaesthetic. I bury my nose in Q magazine and pop another gummy bear into my mouth. I’m waiting in cubicle 22 in the A&E department of Whipps Cross. I’ve been here about 4 hours. Earlier, if my memory serves me correctly, I saw the consultant doctor who confirmed I do have an abscess, “You’re going to have to come into hospital.” I let out a sigh so big my toes deflate. “I’m sorry, I can’t just send you home with antibiotics, these things can get quite nasty. Come on let’s get you registered.” Naturally a girl with a cascade of peroxide Dolly Parton curls and a broad Texas accent registers me. Whipps Cross never fails to disappoint. I expect the porter taking me to the ward will be JR Ewing. So I’m placed in cubicle 22 and told to wait. Eventually the familiar face of one of the surgical team appears around the curtain. He examines the swollen area around my stoma. “You’ve got a localised abscess here, which is going to need draining.” Ouch. “This is more consistent with Crohn’s, you know” he adds, looking up to check my reaction. I’m prepared, “I saw gastroenterology on Friday and they said it was definitely UC.” “Well if they could see this I don’t think they’d have any doubts. It’s Crohn’s.” The doctor says he’ll see me tomorrow and I wait to find out what ward I’m on. So it’s Crohn’s again? Crohn’s, UC, Crohn’s, UC, what’s it to be? Can’t we just pick one and stick with it? At least for a few days. I’m angrily biting the heads off gummy bears when I’m told I’m going to Primrose Ward. Ah, my old stomping ground. This is to be my third stay in hospital in 3 months. I wonder if the NHS has a loyalty card scheme?
My GP is examining the inflamed area to the left of my stoma. The inflamed area to the left of my stoma is new. It’s red and angry looking, the skin taut and shiny, solid to the touch. It reminds me of the old cricket ball my dad kept under the stairs when I was growing up. “Okay, you can do yourself up and take a seat,” the doctor says, washing her hands. “I’m going to make you an appointment to see a consultant at A&E.” A&E. That means Whipps Cross. Hospital. Again. “You might have an abscess, which would explain why you’re feeling so bad.” The doctor makes a phone call and an appointment is made for 4pm the next day. A&E. Whipps Cross. Again. Once more unto the breach, dear friends…
Tuesday 31st March
The screams are coming from a few cubicles down. I can’t imagine the level of pain that could cause such a full throttled scream. This is what it must have been like in operating theatres before the invention of anaesthetic. I bury my nose in Q magazine and pop another gummy bear into my mouth. I’m waiting in cubicle 22 in the A&E department of Whipps Cross. I’ve been here about 4 hours. Earlier, if my memory serves me correctly, I saw the consultant doctor who confirmed I do have an abscess, “You’re going to have to come into hospital.” I let out a sigh so big my toes deflate. “I’m sorry, I can’t just send you home with antibiotics, these things can get quite nasty. Come on let’s get you registered.” Naturally a girl with a cascade of peroxide Dolly Parton curls and a broad Texas accent registers me. Whipps Cross never fails to disappoint. I expect the porter taking me to the ward will be JR Ewing. So I’m placed in cubicle 22 and told to wait. Eventually the familiar face of one of the surgical team appears around the curtain. He examines the swollen area around my stoma. “You’ve got a localised abscess here, which is going to need draining.” Ouch. “This is more consistent with Crohn’s, you know” he adds, looking up to check my reaction. I’m prepared, “I saw gastroenterology on Friday and they said it was definitely UC.” “Well if they could see this I don’t think they’d have any doubts. It’s Crohn’s.” The doctor says he’ll see me tomorrow and I wait to find out what ward I’m on. So it’s Crohn’s again? Crohn’s, UC, Crohn’s, UC, what’s it to be? Can’t we just pick one and stick with it? At least for a few days. I’m angrily biting the heads off gummy bears when I’m told I’m going to Primrose Ward. Ah, my old stomping ground. This is to be my third stay in hospital in 3 months. I wonder if the NHS has a loyalty card scheme?
Monday, April 6, 2009
Under the, erm, weather
Saturday 28th March & Sunday 29th March
What a difference 24 hours can make. Yesterday I was swanning round Whipps Cross, practically high-fiving the consultants in celebration of my speedy recovery, and just a day later I feel like the hand of death has slapped me sharply about the back of the head several times before slipping down my throat to deliver a well executed Chinese burn to what little is left of my large colon. Okay, that may be a slight exaggeration, but in my defence, I am only a man. Anyway, I don’t feel well all weekend.
The symptoms:
Headaches
Tiredness/achy
Yucky fluey feeling
Abdominal pains
Possible cause:
Flu
UC flare up
Steroid withdrawal
The weather (yes, the weather, not entirely sure how an overcast sky can cause stomach ache, but the weather was mooted at one point by my girlfriend.)
At bedtime on Sunday I kiss my girlfriend goodnight and lay my pounding head on the pillow. Then for some reason my tired mind turns to Spike Milligan’s headstone, which famously is inscribed with the epitaph: I told you I was ill. After a few moments mulling this over I feel compelled to say something, “You know, if anything happens to me in the night, then I don’t think it’s the weather, okay.” Out of the darkness a response, “Goodnight, Martin.” It’s then I decide if I’m still alive in the morning, sorry, still feeling the same in the morning I’ll make an appointment to see my GP. I give it another go, “I was just saying that if anyth…” “Goodnight.”
What a difference 24 hours can make. Yesterday I was swanning round Whipps Cross, practically high-fiving the consultants in celebration of my speedy recovery, and just a day later I feel like the hand of death has slapped me sharply about the back of the head several times before slipping down my throat to deliver a well executed Chinese burn to what little is left of my large colon. Okay, that may be a slight exaggeration, but in my defence, I am only a man. Anyway, I don’t feel well all weekend.
The symptoms:
Headaches
Tiredness/achy
Yucky fluey feeling
Abdominal pains
Possible cause:
Flu
UC flare up
Steroid withdrawal
The weather (yes, the weather, not entirely sure how an overcast sky can cause stomach ache, but the weather was mooted at one point by my girlfriend.)
At bedtime on Sunday I kiss my girlfriend goodnight and lay my pounding head on the pillow. Then for some reason my tired mind turns to Spike Milligan’s headstone, which famously is inscribed with the epitaph: I told you I was ill. After a few moments mulling this over I feel compelled to say something, “You know, if anything happens to me in the night, then I don’t think it’s the weather, okay.” Out of the darkness a response, “Goodnight, Martin.” It’s then I decide if I’m still alive in the morning, sorry, still feeling the same in the morning I’ll make an appointment to see my GP. I give it another go, “I was just saying that if anyth…” “Goodnight.”
Sunday, April 5, 2009
Looking good
Okay, so this is what happened...
Friday 27th March
A flicker of recognition lights up the face of the young female doctor, “Oh hello, how are you? You look really well.” We’re standing in the queue at the hospital shop. “I’m good, thanks, feeling much better now,” I reply, “Just come in to see the consultant.” It’s strange how many people I know at Whipps Cross these days. I’m on nodding terms with far too many doctors and nurses for someone not on the NHS payroll. “It’s always nice for us to see patients looking so well again,” she says, filling a slightly awkward gap in the conversation. “Yeah, I wasn’t exactly at my best before,” I admit, thinking back to the Primate of Primrose Ward look that I was sporting the last time we met. The doctor smiles politely, no doubt also thinking back to the Primate of Primrose Ward look that I was sporting the last time we met. The two shopkeepers behind the counter beckon us forward simultaneously, providing welcome respite from the pressure of enforced conversation. We both finish at the same time and leave the shop. “Well, nice to see you, bye,” says the doctor as she turns right. “Um, yes, bye,” and I begin to follow her before realising I’m going the wrong way. Like some bumbling Englishman in a tired cliché-ridden Richard Curtis film I try to act all casual and turn on my heels and head back the way I came. I just catch the doctor looking over her shoulder with a slightly confused look on her face. Her step quickens.
“You’re looking much better than I thought you would,” beams my consultant. I could get used to all these compliments. I take a seat. “Yeah, I’m feeling alright, getting back to my old self.” It’s exactly 4 weeks since surgery and this is my first appointment with the gastroenterologist. We exchange a few brief pleasantries then get down to business. I recap on my meeting with the surgeon earlier in the week and explain how he still believes I have Crohn’s. This is met with a smirk and much shaking of the head. “You’ve definitely got ulcerative colitis. Every test we’ve ever done shows ulcerative colitis,” before adding, “And we are gastroenterologists, we deal with these things day in day out.” I really expect him to finish with ‘so there!’ but he doesn’t, which is disappointing. Witnessing an intelligent and well-respected member of the medical profession resort to playground language would inject some silliness into a fairly mundane 10 minutes of my life. We review my medication. We lay out a plan for blood tests every 3 months. The senior consultant pops in, we shake hands, and he too remarks on how well I look. He agrees that I definitely have ulcerative colitis. UC it is then. Great. UC I kind of understand. UC doesn’t feel so much like the short straw to me. UC I can deal with. Plus it means I don’t have to change the tagline at the top of this blog to ‘Life with Crohn’s…possibly…depending on who you talk to.’ Finally it’s decided I should come back in 6 weeks and we’ll discuss next steps regarding surgery. I walk out of there tall and proud. The Primate of Primrose Ward has evolved.
Friday 27th March
A flicker of recognition lights up the face of the young female doctor, “Oh hello, how are you? You look really well.” We’re standing in the queue at the hospital shop. “I’m good, thanks, feeling much better now,” I reply, “Just come in to see the consultant.” It’s strange how many people I know at Whipps Cross these days. I’m on nodding terms with far too many doctors and nurses for someone not on the NHS payroll. “It’s always nice for us to see patients looking so well again,” she says, filling a slightly awkward gap in the conversation. “Yeah, I wasn’t exactly at my best before,” I admit, thinking back to the Primate of Primrose Ward look that I was sporting the last time we met. The doctor smiles politely, no doubt also thinking back to the Primate of Primrose Ward look that I was sporting the last time we met. The two shopkeepers behind the counter beckon us forward simultaneously, providing welcome respite from the pressure of enforced conversation. We both finish at the same time and leave the shop. “Well, nice to see you, bye,” says the doctor as she turns right. “Um, yes, bye,” and I begin to follow her before realising I’m going the wrong way. Like some bumbling Englishman in a tired cliché-ridden Richard Curtis film I try to act all casual and turn on my heels and head back the way I came. I just catch the doctor looking over her shoulder with a slightly confused look on her face. Her step quickens.
“You’re looking much better than I thought you would,” beams my consultant. I could get used to all these compliments. I take a seat. “Yeah, I’m feeling alright, getting back to my old self.” It’s exactly 4 weeks since surgery and this is my first appointment with the gastroenterologist. We exchange a few brief pleasantries then get down to business. I recap on my meeting with the surgeon earlier in the week and explain how he still believes I have Crohn’s. This is met with a smirk and much shaking of the head. “You’ve definitely got ulcerative colitis. Every test we’ve ever done shows ulcerative colitis,” before adding, “And we are gastroenterologists, we deal with these things day in day out.” I really expect him to finish with ‘so there!’ but he doesn’t, which is disappointing. Witnessing an intelligent and well-respected member of the medical profession resort to playground language would inject some silliness into a fairly mundane 10 minutes of my life. We review my medication. We lay out a plan for blood tests every 3 months. The senior consultant pops in, we shake hands, and he too remarks on how well I look. He agrees that I definitely have ulcerative colitis. UC it is then. Great. UC I kind of understand. UC doesn’t feel so much like the short straw to me. UC I can deal with. Plus it means I don’t have to change the tagline at the top of this blog to ‘Life with Crohn’s…possibly…depending on who you talk to.’ Finally it’s decided I should come back in 6 weeks and we’ll discuss next steps regarding surgery. I walk out of there tall and proud. The Primate of Primrose Ward has evolved.
Saturday, April 4, 2009
The missing week
Apologies for the lack of posts recently, I had to go back into hospital for a few days. Still feeling a bit tired, and not quite blog-fit, but I will explain everything in due course.
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