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Got yourself a new ileostomy? All I can say is be prepared!

Cover JpegTo buy the paperback version of my book, click here

To buy the Kindle version of my book, click here

I talk a lot about living with ankylosing spondylitis, but I don’t talk much about my history with ulcerative colitis. Of course, I write about it at length in my book, but here, not so much. It’s coming up to 14 years since this aggressive, monstrous disease almost killed me, 16 years since my diagnosis, and given that I’m having bother with what’s left of my insides after years of thinking ‘I’m mended!’, it’s making me think, ‘when?’ rather than ‘if’ I will have to endure more surgery. I can’t bear to think about it, yet when I stop thinking about other things, it’s all I think about.

I had kept my colitis under control with steroids and by self-managing my diet and nutrition for almost two years, since diagnosis in 1999. However, because I was crippled with hip and back pain and unable to walk, my GP put me on anti-inflammatories. They certainly helped me to walk again, but the downside was that they exacerbated the colitis and I basically started bleeding to death within three days of taking the pills, barely conscious half the time, crawling from the sofa to the toilet 30 times a day. My GP seemed a bit concerned. I was a bit concerned. By the time I couldn’t lift my head off the pillow I reached for my mobile, rang my parents and said, ‘Er, I’m pretty sure I need to go to hospital’.

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Going back to this place for outpatients appointments got me in such a spin I had to change hospitals this year

Once in hospital, things didn’t get any better; on day five it was announced that I’d be having emergency surgery to remove my entire large bowel in what’s know as a total colectomy. My parents were told to ‘prepare themselves’ as I ‘might not make it through the night’. My body was shutting down and I sure as hell didn’t have the ability to do anything about it. To prepare myself I asked for extra morphine and a Diazepam, waved goodbye to my parents with a fake smile on my face which of course, they saw right through, then cried myself to sleep.

sleeping-beauty-89

If only I’d had my own room!

Surgery was traumatic; I lost so much blood and was so gravely ill I had to be put back together in a real hurry. My bowel had disintegrated. The surgeon described it as having the consistency of blotting paper. If you’re wondering how an emergency total colectomy is performed, it goes something like this:

Slice open patient, right down the middle. Burn and cut large bowel from muscles and internal organs. Form ileostomy from small intestine. Lift out large bowel, which is falling apart and mainly just ulcers and blood. Dump on table. Panic about patient losing tonnes of blood. Wipe brow with back of arm. Turn up Vivaldi on the stereo. Pump blood into patient. Massage their heart when they go into shock. Staple patient’s torso back together sharpish. Hope for the best.

Things changed forever that day; not least because half my hair went white overnight when my body shut down, but because I’d suddenly acquired a loop ileostomy (stoma) for which I was totally unprepared for. I had also lost so much weight whilst slowly dying in hospital that bright red lump of flesh, which moved of its own accord, this monstrosity which was like a giant STOP button made of jelly, seemed to take over my body. I was so thin (I weighed 40 kilos, having lost 10 kilos from my regular weight) that it stuck out two inches from my stomach. I lost my mind in hospital; when I was diagnosed with post-traumatic depression I was promised some help, but it never came. Once I was able to eat real food (I say that in the loosest terms possible; this was a hospital, remember) and change my stoma bag myself (albeit crying, shaking and gagging the whole way through) I was released back into the wild, left to my own devices; somehow I was meant to pick up the pieces of my shattered life, a life which would never be the same again.

The thing is, up until the week of my almost dying I had never had the need to rush to the toilet, despite my colitis being diagnosed as ‘severe’ in the sense that the disease was right the way around my colon, rather than affecting part of it. I had never had stomach pains, never thrown up, didn’t have any of the symptoms which make people grateful for ending up with a stoma. To that end, I was utterly horrified at what had become of me, and while that feeling subsided a little after the first couple of months, it never truly went away. People would say, ‘Oh good, you’re better now’ and I’d say ‘No, I’m not better, I’m just not dead’. I couldn’t read a book, watch TV or listen to music for weeks. I was in a total state of shock; I barely uttered a word to my parents for a fortnight after leaving hospital, just saying ‘yes’, ‘no’ or ‘I don’t know’ on a loop.

I shook with anxiety the whole time. I was so weak from surgery and the dramatic weight loss, so sore from having my guts yanked out that just taking a shower exhausted me. I cried each time I had to change my bag, putting it off until midnight some days, simply because I couldn’t bear to look at it. I had such sore skin around it because I was allergic to the glue on the bag that blisters formed in two-inch deep circle all around the stoma. The spray I was given to help shift the glue from the bag stung as if someone was pouring acid onto my stomach. Let’s just say I couldn’t wait to get rid of it, and when my surgeon suggested J-pouch surgery which would rid of me of the stoma… well, I all over that idea.

Nine months later: I’m not going to lie, I actually had a worse time in hospital after that than I did when I was being fed through my veins and had a mouth full of bleeding ulcers. I lost a lot of blood again during surgery and fell into a critical condition, so I was sewn up in a hurry once more with only half the work done. Me and general anaesthetic are not friends.

I woke up with what’s known as an end ileostomy. Rather than it sticking out of my side like a big jelly button, it lay flat against my skin, more like a bullet wound. I won’t even tell you how I felt to wake up after surgery and be told that I still had my insides on my outside. There are none to convey the despair I felt. So what happened after that? Well, those of you who’ve read my book will know the answer to that. I had tubes going into every orifice possible; up my nose and down my throat, up my backside, into my groin, in both hands, in the crook of my arm, the epidural in my spine. It was utterly unbearable. Unless you’ve been there, you can’t possibly imagine what that’s like; all the while with burning pain, non-stop sweats, the inability to do anything for yourself.

I was let out after a couple of weeks, breaking all attendance records in desperation to get out. I actually leaving with an infection which the nursing staff missed. I knew something was wrong when I had a migraine, scorching hot skin and was throwing up, but I couldn’t stand another night on the ward next to old ladies with prolapsed bowels and dementia, so I said, ‘I feel OK’ and that was it, they let me go. I’d already called my parents that morning to say I was allowed home before the staff had even seen me. I’d made my mind up that I would just walk out of there if I wasn’t officially discharged. The stench on that ward was sickening; it’s no wonder I got even more sick from being there. I mean, who puts a patient who’s just had major surgery and almost died AGAIN, and therefore has huge wounds that need to heal right back on the ward where everyone else is sick? The billions of bacteria floating about in that hot, disgusting room, the room where the heating was on permanently, with no windows open and no air didn’t bear thinking about.

Things didn’t go smoothly; a couple of hours after arriving home from the hospital, my bag began to leak. I felt the hot, wet burning sensation (pure stomach acid with a little breakfast) trickle into my lap and asked my mum to help me to the toilet (I was so weak and so sore I could barely shuffle to the toilet at this stage). I couldn’t figure out what was wrong. My mum rang the hospital, and they said, ‘Oh right, we must have sent her home with the wrong bag, sorry about that.’ Brilliant. The stoma nurse had applied a bag suitable for the loop ileostomy, not the end ileostomy. I had a box full of the wrong bags, and here I was, sitting naked in the shower, stomach acid and the remains of my toast dripping down my legs, in floods of tears and complete panic.

The hospital said they would send a district nurse around the next day with the correct bags. I spent the night with an old towel wrapped around my middle, on top of two more towels, on top of my bed, with a blanket on top of me, in terrible pain, exhausted and completely bewildered. I wanted to die. I had nothing left. I was so tired.

Meanwhile, the infection I picked up in hospital was serious enough for my GP to insist I went back in. I insisted that seeing as I got the infection from there in the first place, there was no way I was going back to be exposed to more shit (both in the literal and metaphorical terms). I was instructed to go to the local hospital in that case, where I was born. I said, ‘Won’t it be funny if I die there as well?’ which wasn’t funny at all. I refused to go. I was prescribed super-strong antibiotics and managed to ride it out over the next few days. My poor parents went to bed each night wondering if I’d still be alive the next morning. I didn’t like to tell them that I was wondering the same.

Moving on: six weeks down the line and I’d got a handle on the new stoma – I still hated it and was still covered in blisters and sores, don’t get me wrong – and I’m walking along a leafy London street on a hot summer’s day to meet my boyfriend (said boyfriend is an ex-boyfriend who came back into my life just at the right time). I thought him pretty brave to pick up the pieces; he simply loved me the same as he always had; maybe even a bit more because I was kind of vulnerable and needed taking care of, something completely alien to me before this point. So, I’m walking. I’m wearing a knee-length denim skirt, vest top, wedges, sunglasses. All is as well as it can be, I thought.

Well, that was a BIG f*cking mistake.

big-mistake

Hot liquid ran down my leg. Hot, dark green liquid. A man was walking towards me; I put my hands over my stoma and stood still, squashing my legs together, hoping he’d pass quickly. He smiled, I smiled, he didn’t notice. I was alone again. I hurried, taking my phone out of my bag and calling my boyfriend who was just leaving work to meet me at his flat.

‘It’s me,’ I said, walking so fast now I was afraid I was going to trip up, ‘My bag is leaking, it’s leaking everywhere. I’m in the street and it’s all running down my leg. Please come and get me.’

I carried on walking, clutching my stomach, trying desperately to stem the flow of stomach acid and breakfast. I had no tissues on me (seriously). I was spending the weekend at his place so had brought along another bag so I could change it, but it hadn’t crossed my mind to bring a spare disc (the hard plastic bit which goes against your skin before the bag goes on top), nor had I brought a full change of clothes, other than underwear and another vest top. My skirt was all I had, and that was fast becoming a hot mess.

My boyfriend met me at the end of the street. I was in tears, utterly embarrassed and ashamed. His flat mates were at work, thank God. I shut myself in the bathroom and stripped my clothes off, throwing them into the bath. I showered myself off. The stoma went quiet, finally. My boyfriend, by now, was driving around London on his moped desperately trying to find a chemist who had some stoma kits in stock. Meanwhile, I was sitting on the loo clutching kitchen roll to my stomach, exhausted and panicking.

It turns out the chemists don’t stock stoma kits. I hadn’t known that. He tried four places before ringing me, and now he was in a panic. His next stop was the hospital (this was all in London’s rush-hour traffic, by the way, so an hour had already passed) who said they didn’t give out stoma kits either. He stressed that this was an emergency, but they were having none of it. Their answer was that I had to go home and ask my GP for a prescription. ‘She can’t go home, she’s leaking everywhere and she lives in Kent, not London!’ he exclaimed, exasperated by now. He went back to the chemist and bought what appeared to be the entire stock of bandages and tape.

While I patched myself up as best as I could he put my clothes in the washing machine and made me a cup of tea.

I wish I'd looked this good

I wish I’d looked this good

I wore one of his t-shirts and stayed in the bathroom in case it leaked again.

It leaked again.

I was hungry now, but afraid to eat because that would set the stoma off again. In the end we went for dinner around the corner, me in my freshly-laundered clothes, covered in tape and bandages. I also had tissue stuffed around my knickers in case it all kicked off again. We ate, we went back to the flat, I toyed with the idea of going home but I was too exhausted, and it was too far. Our whole weekend was ruined. I’d ruined it.

I spent the night lying next to my poor boyfriend, flat on my back, only now with a layer of Clingfilm over the bandages along with a towel on top of me, and one underneath me. I didn’t sleep a wink. I went home the next morning, praying that I’d make it through the train journey without another incident.

At the time, there was no social media, no Facebook, no support other than traditional newsletters and a helpline I never took advantage of. I never saw anyone else with disfiguring scars, with a bag, never read about it, nothing. If this happened now, I’d probably stop to take a photo of me sitting on the loo with bandages all over the place; I’d probably have taken a photo of my stoma, or asked my parents to document my decline in hospital. I have nothing to show for the horror I endured, apart from some very well healed scars. The long scar is actually two scars, one from each operation, very close together. It goes an inch above what you can see, and an inch below. Kim Kardashian would have a field day on Instagram with this shit; me, I just put my clothes on and don’t think about it.

The surgeon did an amazing job. I looked horrific for months; a year later and they had begun to fade

The surgeon did an amazing job. I looked horrific for months; like I’d been mauled by a bear. A year later the angry, raised, red scars began to fade

At that point I vowed NEVER to leave the house without a spare disc, bag, wipes and change of underwear. That’s something everyone with IBD learns; sometimes the hard way. Since I had J-pouch surgery, I’ve not had to worry so much, but now that I’m not well again, it’s back to tissues, wipes, other stuff every time I leave the house. So, the moral of the story for anyone who’s just had stoma surgery is this: dudes, be prepared.

As Clarence says in True Romance, ‘It’s better to have a gun and not need it than to need a gun and not have it.’

true-romance

Damn right, Clarence

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Martini On The Rocks, anyone?

Cover JpegTo buy the paperback version of my book, click here

To buy the Kindle version of my book, click here

Last month I described how much it hurt to inject Humira, the anti-TNF biologic which is prescribed for my ankylosing spondylitis and IBD. I scoured the internet for advice on how to reduce the pain, and found that most patients favoured numbing the injection site with an ice cube before injecting. Another patient’s nurse had advised that she rub either side of the site gently as the needle went in to increase blood flow and encourage the solution to dissipate more quickly. Someone else said that putting their leg up on a chair so it was straight, rather than bent, worked wonders. Frankly, I’d have hung upside down from a tree whilst smoking a cigar and counting to 100 in Mandarin if someone had suggested it.

Armed with that information in mind, I set up shop for my next injection. Believe me, I had to gear up to that all day. It’s like knowing you have to punch yourself in the face after dinner to give yourself a convincing black eye so you don’t have to go to work the next day. I mean, only a total mentalist would just go ahead and punch themselves in the face, right?

This time I poured myself a Martini, took a fake Cornetto from the freezer and decided to try out three new moves:

Right, let's do this

Right, let’s do this

Move One: I put my leg up on the chair, out straight rather than bent

Move Two: I rubbed the injection site gently either side of the needle as I pushed said needle into my thigh (this was harder than it sounds. I could have done with three hands at this point)

Move Three: Instead of trying to inject in one go, like I did with Enbrel, I thought some breathing exercises would help. I took a deep breath and exhaled as I pushed the plunger thing down for two seconds. I stopped for another two seconds, then did the same again. I was still on the verge of tears but puffing my breath and taking it slowly worked. It was maybe 30% less painful than before.

Two weeks later, I did all the same stuff but I also numbed the injection site with an ice-cube, swapped the fake Cornetto for some Lindt milk chocolate and substituted the Martini for a rather nice dessert wine.

Booze, drugs, legs

Booze, drugs, legs – like a scene from ‘Trainspotting’ only clean

I’m not sure if the ice, the dessert wine or Lindt were to blame (possibly none of the aforementioned) but I do know that it hurt more with a cold leg, so I scrubbed that move off the list.

Such a tiny bit of blood for something which hurts so berated

Pah – such a tiny bit of blood for something which hurts so flipping much!

My dead mink, Fried Eggs, then picked up the syringe and said he wanted to try it because, and I quote (no, really) that he ‘had a sore leg from falling out of bed’. I had to wrestle it from his little paw before he hurt himself. Kids, eh?

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Fried Eggs, no!

So there you have it. It still hurts, but a bit less. Really, I wouldn’t even do it if I didn’t have a treat at the end of it. That, and the fact that without it, I would die. I’m not being dramatic. I would die. The pain would be so agonising that I would end up throwing myself off a motorway bridge. Please don’t think I’m being glib about suicide; I’m not. I’ve been in that exact same situation and it was anti-TNF therapy which saved my life a decade ago, and is still doing so today.

That’s my ritual now. I inject, Gautier brings me a treat and afterwards we watch ‘Brooklyn 99’ on Netflix so I can laugh my head off rather than think, ‘OW OW OW OW OW MAN THAT STINGS’ for ages.

In other news, I fell off some rocks and acquired a salad spinner.

The salad spinner is my new friend; it’s made by a company called OXO who, in a nutshell, design everyday objects things better than other companies design everyday objects. If you’ve got fibromyalgia or arthritis in your arms, spinning salad is quite an effort (although granted, not one you probably make that often). I can’t even eat salad very often as I can’t digest it, but when I do, I use this. It has a clever button which does all the work for you while you stand there resting your arms and saying ‘Keep going, little spinner!’ Even their vegetable peelers glide over carrots like a dream; never thought I’d find pleasure in a peeler but I do. If you’re in pain, every effort hurts, so it’s worth investing in items which reduce that. If you’re not in pain, you’ll still have fun spinning salad. You can thank me later.

As for the rocks, Gautier and I were at a seaside town north of Bordeaux called Royan which we didn’t much like. I was in my bamboo ensemble: bamboo bag, bamboo earrings, bamboo bangles, bamboo-ish dress with bamboo buttons; here’s me taking a photo of myself in the loo, doing my best stupid idiot face into the mirror:

Bamboo overload

Bamboo overload

It turns out Royan didn’t much like me either; after a lovely dinner at a beach side restaurant at sunset, I suggested we go for a little walk on the sand. There I was, full to bursting with fish goujons and chips and so happy to be back by the sea (I miss Brighton so much I can’t tell you). Anyway, I digress. Here is my dinner:

Yum! Everything was going so well...

Yum! Everything was going so well…

Looks perfect for a midnight stroll, doesn’t it? That’s what I thought.

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I was well excited about the sand

Granted, I’d had a cocktail which must have clouded my judgement somewhat, but here’s what happened: I attempted to climb over a low wall, onto some giant rocks, then step down to the sand. Gautier was helping me. It should have been one, two, three steps and landed. Unfortunately, what I had thought was sand was, in fact, a massive, flat rock which was just looked – under the midnight sky – like sand.

Needless to say I lost my balance and was catapulted onto my left shoulder and my FACE. Yes, my face. My right leg went from under me and my foot scraped itself on the rock. Thankfully my face found a bit of sand rather than rock. I was holding my tiny bear, Chips, in my left hand. He screamed, I screamed and my aim was to save him from hitting the sand, so I held him aloft, which upset my balance even further. What a div.

Gautier picked me up and told me off. He is like that; he tells me off first, then asks if I’m OK. I wasn’t OK; my foot was bleeding and I did a cry.

Off we went, back to the hotel (which was fortunately about 20 feet away), with my sandal in one hand and a very traumatised Chips in the other. I limped back to our room and did the first aid bit. Gautier enjoys pouring white spirit on cuts and grazes; I was pushed over by a strong wind once and grazed the hell out of my hands. He just threw this stuff on them like a torturer would. I was squealing like a stuck pig. Man, that stuff BURNS. Chips wanted to help, so he put the plaster on.

Poor Chips; he was so upset but stayed calm to administer first aid

Poor Chips; he was so upset but stayed calm to administer first aid

Great job, Chips!

Great job, Chips!

The next day I limped about even more than I usually limp about, and wondered aloud my shoulder hurt so much. ‘Because you fell on it,’ Gautier reminded me. By day two, I could barely stand on it as the bruise started to come out. On day three I got bitten by something in the garden (not a camel, more likely a spider) on the same foot, which then blew up like a hideous sausage.

At one point I thought I was going to have to saw it off; fortunately some anti-histamines and a herbal concoction from the mother-in-law’s medicine cabinet saved me from that. Hallelujah.

This week I am mostly attempting not to injure myself or get bitten.

I’ll let you know how I get on.

The Drugs DO Work – But Why Do Humira Injections Hurt Like The Worst Kind of Hell?

Cover JpegTo buy the paperback version of my book, click here

To buy the Kindle version of my book, click here

If you’ve read the book, pleeeeeease hop by Amazon and leave a nice review. If you enjoyed it, that is. Thank you.

Right, so I promised I wouldn’t take so long to write the next installment of my silly life, but I broke my promise. I don’t know where the time goes; really I don’t. Humira, then. For those of you you wondering what that is, it’s not a brand of Japanese car (come to think of it, it might be. I haven’t checked), it’s the biological drug I switched to at the beginning of April. I went into detail about why I switched after a decade on Enbrel, a similar biologic, in my last blog. I also talked about how apprehensive I was about switching. It turns out that so far, it’s probably one of the best decisions I’ve ever made (aside from saying ‘Yeah, OK!’ to Gautier when he proposed to me, drunk out of his French mind back in 2007).

Gautier, yesterday. Maybe

‘Marry moi!’

My new rheumatology nurse specialist couldn’t understand why I was still being prescribed a drug which wasn’t working. I mean, it was working up to a point – I could walk most days and had far less pain, generally, than I did before I started taking it – but I could count only around 20 pain-free days during the past year, a calculation which was met with a gasp from the nurse and a kind of ‘Right-that-doesn’t-sound-good-when-I-say-it-out-loud’ face in return.

It was at that point that I realized I’d been a bit hard-done by. Any rheumatologist worth his salt would have suggested I switch years ago. Of course, having one 20-minute consultation a year – that’s right, one a year – doesn’t give them much time to work out that there’s something strange afoot. They don’t have time to read their patients’ notes before they sit down, so at least five minutes of the appointment is spent reading the latest blood results and saying ‘Right, what is it you’ve got again? Remind me.’ The first rheumatologist I had would start every appointment with the sentence, ‘So how are you getting on with the bag?’ He was referring to my ileostomy but I hated that he called it a ‘bag’. I’d say, ‘Actually, I haven’t got it anymore, I have a J-pouch. I didn’t have it last time I came in either, nor the time before that.’ Consultants can’t possibly remember everything about their patients’ health; they’re over-worked and we’re on this target-lead conveyor belt where the only phrase which links us all is ‘Next!’

I got told by the next rheumatologist that I needed to ‘get used to the idea’ that I would always be in pain. To that end I was supposed to have some kind of counselling from a psychologist at The Pain Clinic, but someone must have put the referral letter on the wrong pile because a year later, when I chased it up, nobody knew anything about it. Brilliant. Obviously by that time I’d talked myself into it and was resigned to the fact that at some point, I would probably opt to take my own life, because being in pain every day is not only mind-crushingly exhausting, but equally, really boring. Existing is not the same as living, and anyone in chronic pain will tell you that. We lose so much, bit by bit, month by month until there comes a point when we have nothing left with which to fight, or nothing left worth fighting for. I could sense that the consultant was more than ready to leave those four walls with their posters of the inner-workings of the spinal cord and get out on to the golf course; after all, dealing with the likes of me, with my incurable illnesses and barrage of questions can’t have been much fun.

Here’s the thing, though: when I asked about switching treatments, he shrugged and said, ‘It’s up to you.’ When I asked questions such as ‘Have any of your other patients switched? What is the success rate for that? Might I get side-effects I haven’t had on Enbrel? How long would I have to stop taking Enbrel before taking Humira?’ and stuff like that, he said, ‘I don’t know,’ ‘I’m not sure’, or ‘Maybe’. Seriously. If he genuinely didn’t know the answers to my questions, who did? How can he be in a job where he’s prescribing these drugs to patients but has no idea how they work? I was like, ‘Say WHAT?’ So the nurse convinced me. Good for her. I’ve waited 15 years for someone who could help me to actually help me.

My new rheumatology nurse. Maybe

Good nurses are brilliant, always have been

I asked for the Humira to be in pen-form, rather than syringe. I was fine with the injection for Enbrel and jabbed that needle in my thigh twice a week for 10 years like nobody’s business. I couldn’t even feel it most of the time, unless I hit a blood vessel. I liked the idea of the pen being much easier to travel with than the plastic cartons and you can line them up nicely in a little travel case because they take up way less room. I read all the instructions and decided to give it a go in my stomach. I’d never injected here, as I have so much scar tissue from my colectomy and J-pouch surgery. I held the pen, poised for action, pressed the tip and BAM!

Me just after the Humira pen burst into my stomach

Me just after the Humira pen burst into my stomach

ERMAHGERD IT HURT. The force of it was nuts, I felt like I’d been stabbed with a Biro filled with molten lava. It actually made me cry, and that’s not something I do very often, unless I drop my ice-cream or think about the end of Top Gear. I had no adverse reactions other than screaming my head off and crying. At the time I was in a lot of pain as I was at the back end of just having sold the house and sending its contents to France. My stress levels were through the roof, and I felt so rough I could barely walk around the house, let alone go out, for the first 12 days after arriving at my parents’ house. Fun times. Anyway, I started to feel better by the second dose, two weeks later. Again I pinged it into my stomach, again I screamed and again I cried. Really. I couldn’t figure out why it hurt so much when needles have never been an issue for me (unless someone is waving one in front of my eye, say). By the time I was ready to leave for a couple of weeks in France, I had requested that my prescription be changed back to the syringe.

Me with the Humira syringe. I need to get out in the sun, I think

Me with the Humira syringe. I need to get out in the sun, I think

So I get the syringe option now, and think, ‘Ha! I know you! You don’t hurt!’ but guess what? ERMAHGERD IT HURT. I didn’t scream, because the process wasn’t sudden like it is with the pen, but I actually thought I was going to pass out with the pain. I was properly sobbing with the pain. It was like injecting acid into my leg. Gautier looked up from the iPad and said, ‘Monkey, are you OK?’ as beads of sweat popped off my forehead and I apparently went as pale as talcum powder. This was 10 seconds of extraordinary agony as opposed to about three seconds of it with the pen. ‘This hurts just as bad!’ I cried, through a face full of hot tears, grimacing like someone who’s just discovered a rotten corpse in their bed. I drank a glass of water, stood up and then poured myself a glass of wine and drank that.

I’m due to inject again on Monday, and I’m properly dreading it. It must be something to do with the formula being pre-mixed, because with Enbrel, you have to put the powder in with the saline to mix it first. I’ve no idea why that’s the case, or whether I’m just going soft in my old age, but man, it’s awful. Thank God it’s only once a fortnight, but gearing yourself up for super pain isn’t easy. A bit like when the bloke who got stuck in the rocks in the American desert for 147 hours or something had to cut his arm off with a blunt penknife (if I said that out loud to Gautier, he’s say this: ‘Yes, monkey, it’s JUST like that. My God.’) I’d be interested to know if anyone else has made the same switch from Enbrel to Humira, and if they noticed the difference. I’d also like to be sent some edible gifts from anyone who hasn’t had to even consider taking biologics in the first place, because that means you’re really lucky, and I’m not. Seems fair, no?

The thing is, two months in and my pain has improved by miles. I’m waking up feeling COMFORTABLE. If you have scoliosis and spinal arthritis and fibromyalgia, you’ll know that it’s nothing short of a little miracle. I want to laze in bed all morning just because the level of pain I was in for the last 15 years meant I couldn’t wait to get out of bed, as the lack of mobility made everything worse. So that’s my news. I’ve got loads more, but I wanted to focus on that for now.

My tummy stuffs aren’t doing so well, which is a bit annoying as Humira is the treatment of choice for IBD. Gah. I’m in France at the moment, typing this on my laptop in the giant garden, sweating buckets despite being in the shade. It’s going to be between 32 and 38 – yes, 40 – degrees (that’s Celsius, by the way) over the next week. My stupid feet are already swelling up at the thought of it, and it’s only day one. Plus I fell on some rocks the other day so one of said balloon feet is all scraped, too. More on that next week; trust me, it’s quite a story. Have a lovely week, everyone. It should be gloriously sunny wherever you are, as long as that’s not Australia, Alaska or the Antartic. All the places beginning with ‘A’ apart from Andalucia, Africa, America… you get the idea. Bisous xxx

No Appointment Necessary

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To buy the Kindle version of my book, click here

I’ve been a bit quiet, it’s true.
There’s a really good reason for that.
Back in July I was told that I didn’t have Crohn’s disease, but rather pouchitis. The latter isn’t a whole lot of fun, but it’s preferable to Crohn’s and much more easily treatable. I was so happy at the news that if it weren’t for my crumbling spine, I would have actually jumped for joy. As it was, I sort of yelped, in a good way, and cried a bit with relief.

Three weeks ago I went to St Thomas’ hospital for my third sigmoidoscopy this year. I have had to remove my underwear so frequently recently that I am considering not even bothering to wear clothes in the first place, just a ‘one-size-fits-all-if-you’re-morbidly-obese’ hospital gown under my coat, so I’m ready for action at any given moment.

Anyway, I digress. The very nice consultant came along to peer at the screen. We were both hoping that the course of antibiotics and probiotics I’d been on since July would have cleared up the rotten mess inside my pouch and that the news would be thus: ‘It was pouchitis, let’s keep an eye on it but it’s nothing sinister, you’re free to go and do a little dance as you leave the hospital’.

It didn’t work out like that.
It’s me, remember. Stuff, in general, doesn’t work out like that for me. I never get good news; if I do it’s only because it’s wrong. I’m lured into a false sense of security for the past couple of months and then the words I don’t want to hear come tumbling out of the consultant’s face: ‘It looks like Crohn’s,’ he says, with a sympathetic expression and a pat on my hand, and lo, my whole world comes crashing down AGAIN.

It gets worse, though. Really. He said I’d be brought back into clinic within four weeks to discuss treatment. To me, four weeks was a long time already. I could have done with the following week, but what can you do but smile, say thank you and put your knickers on? I leave in a daze; mum and I go for a nice lunch on the Southbank and we sit in the sunshine and I’m at a loss for words and mum is shell-shocked. We both have a small glass of wine; it’s too small to help absorb the news. I went back on the train to the seaside, mum went back to Kent and we both delivered the news to our respective other halves; my beloved dad and adored husband, both waiting eagerly for news, thinking it would be the good stuff.

And so I went quiet. I didn’t want to talk about it. I couldn’t bear to talk about it. I still can’t. It was the worst news I could have heard; I let out a big sob in the bath the other night but that was it, it stopped as suddenly as it started and I haven’t cried a tear since, other than for a three-legged cat who needs re-homing (I want to take her but Squeaky wouldn’t have it). I always said I couldn’t deal with any more bad news; I’m not going back on that. I can’t deal with it. Then again, I don’t know what not dealing with it means. I’m doing everything on automatic pilot, panicking like hell on the inside, doing all the regular stuff with a smile on the outside. It’s the only way I know, after all.

The thing is, when shit like this happens, you at least want to be taken care of. Instead, I’m fighting St Thomas’ hospital now just as I have fought The Royal Sussex in Brighton for the past 14 years. What am I cross about now? Well, when it got to 15 days post-results and I had still not received a letter with a clinic appointment so that I might discuss treatment with the consultant, I rang the appointments line to see when it might be, imagining that their answer might be: ‘We’ve just this minute sent you a letter, it’s next week.’

Imagine my surprise when they told me that nothing was in the system. No referral had been made from the consultant’s office. Nothing. Isn’t that just incredible? I mean, words really did fail me. I was informed that the next clinic appointment would be in December, three days before Jesus’ birthday. December! I said some stuff and managed not to swear and then called the consultant’s secretary, whose phone line went to an answerphone upon which I was unable to leave a message because the mailbox was full. Really professional, right? I then spent the best part of two whole days ringing different phone numbers, from main reception to the gastro department to endoscopy to the secretary, over and over again. Everything was automated, not a single human answered. At one point the phone was answered and I got excited… but nobody spoke to me. I could hear conversations in the background akin to what it’s like to wake up from surgery a bit early. I was there, but nobody was acknowledging me. This happened EIGHT times. I suppose they just picked the phone up to stop the ringing (so sorry to bother you, my mistake!) and left it on the desk until the caller (me, on several occasions) got fed up hollering ‘HELLO? ANSWER THE PHONE!’ and hung up.

I then emailed the consultant’s secretary. I had her details from the last time I asked a question about an examination which was, of course, answered incorrectly, and almost scuppered my sigmoidoscopy. Three days after sending the email, I had still not received a response, so then I resorted to writing a letter – how ridiculous – to the consultant in which I explained my predicament. I expect he’s busy with eight million patients and three different clinics and won’t see the letter until January, if at all, but I didn’t know what else to do.

I have spent most of today dialing numbers fruitlessly. My stress levels are through the roof; this is not helping keep my inflammation levels down, so my pain is getting worse by the day.

There is something fundamentally wrong with a system which does not allow a patient to speak to a human being; a system which allows for patients requiring urgent care for serious conditions to be forgotten, a system which only serves to cause more stress and upset to patients who are already dealing with dreadful conditions on a daily basis. I can’t be the only patient that this happens to; how is it that there is nobody held accountable for these mistakes, these lapses of concentration whereby a piece of paper doesn’t get to the desk it should get to, whereby someone on the other end of the phone doesn’t answer their phone, and doesn’t allow for a patient to leave a message.

I’ve since emailed the IBD helpline on the advice of a kind chap on Twitter. I had never been given an IBD helpline number in the first place, or I might have tried that. Let’s see if they respond; I live in hope.

I am sick of being sick, there’s no doubt about that, but I’m even more sick of being ignored, being left to fend for myself and wonder if I will ever be seen by the one person who might be able to help me. If I could afford private healthcare, I’d have signed up long ago. All it takes is for one person to make the appointment they’ve been asked to make, to answer a phone, to say, ‘I can help you, hold on’ rather than ‘I can’t do that, you need to speak to the secretary’ and then give me a telephone number which may as well be the number of the local Chinese takeaway; at least I’d get something out of ringing that. Chicken chow-mein and some prawn crackers, maybe.

I’m saddened, I’m appalled and most of all, I’m exhausted. I’m left with no option other than to make the trip from Brighton to London to actually stand in clinic and shout ‘GIVE ME A F*CKING APPOINTMENT NOW!’ until somebody either a) calls the police or b) calls the consultant. What else can I do, short of throwing bricks at the window or driving a lorry through the front door? Actually, the last one is looking more appealing by the minute.

Answers on a postcard, if you will.

UPDATE: Got an appointment tomorrow (Monday), thanks to the person at the other end of the IBD Helpline. I’m taking the lorry back in a minute…

Mostly Cloudy With Some Bright Spells: the paperback version has arrived!

Image

Look, an actual real life book!

I’m super delighted to shout my head off in celebration of the paperback version of ‘Mostly Cloudy With Some Bright Spells’ arriving in time for Christmas.

It’s been a long time in the making, but well worth it. This version, along with the latest Kindle version, has been vastly improved and updated to include the past year’s trials and tribulations, as well as new diagnoses in the form of stupid scoliosis and even  more stupid fibromyalgia. There are even photos in it (albeit not very good ones).

So, if you have literate friends, family members or pets (that would be something, right?) and don’t want to offend them with the usual rubbish gifts such as socks, monogrammed handkerchiefs, crappy toiletry sets with toxic bath foam and a lump of loofah, you could do worse than buy them a copy of my book. It’s shiny and brightly coloured, so even babies will like it. Dogs will try to eat it, so it’ll be a hit with them, too. If you know anyone who is blind, you can read it to them, putting on different voices and stuff. Just a suggestion.

If you would like be in receipt of a copy signed by my bad self and my trusty sidekick, Pantouf, drop me an email at:

mostlycloudywithsomebrightspells@hotmail.com

Let me know how many copies you’d like, if you’d like them signed to anyone in particular (yourself, perhaps) and where to send them, and we’ll go from there. Simples!

The book retails at £9.99, but I’m offering them at the discounted rate of £9.50. Bear in mind that Amazon are printing them, so I’m paying for them and for shipping from somewhere daft like Colorado. I don’t get any freebies, otherwise I’d be handing them out on street corners*

*maybe

Postage for one copy is £2.60 (stupid, extortionate Royal Mail!)

Postage for up to three copies is £4.50 (you’re better off buying three. No, really)

Postage for four or more copies (I’m not mental, someone nice just ordered four, how great is that?) is £5.50

Payment can be made via PayPal, so it couldn’t be simpler. If you own a carrier pigeon, you can send payment via the skies. Just don’t weigh it down with pound coins, or it’ll crash.

I make a tiny bit more selling directly than I do if you buy one through Amazon, so the choice is yours – give your hard-earned cash to a massive, global corporation, or give it to little old me, a one-woman word machine who’ll spend it on exotic cheeses and treats for the cat. In the spirit of Christmas, you know what to do.

Some kind of relatively normal blog will work its way out of my brain very soon. In the meantime, have a good week. In the rain. Ugh.

Juliette x

Arthritis Awareness Week – The Drugs Do Work (sort of)

Click here to download my book:
Mostly Cloudy, With Some Bright Spells

It seems appropriate, given that it’s Arthritis Awareness Week that I should write about arthritis. You know, to make people aware of it, to put my ‘grown up’ hat on and write something fairly serious for a change, like any other supposed grown up who’s afflicted with arthritis might.

The trouble is I’m just not very good at being serious.

And I don’t have a ‘grown up’ hat.

I have an owl hat. It’s the least grown up hat you can have.

I’m better at being silly.

Silly stuff makes me laugh; laughing makes me forget about the serious stuff.

You know, like arthritis.

But just this once I won’t write about how much I love Tom Cruise and llamas. For once I shall concentrate on something serious. No silly pictures. No clever captions. Just arthritis.

*Rolls up sleeves, clears throat*

I have had arthritis (to be specific, axial spondyloarthritis and Ankylosing Spondylitis) for 14 very frustrating and very painful years. As well as affecting every minute of every day of my life, it affects my husband, my parents and my (few) close friends. I’m also well aware that it affects millions of other people, young or old and in between. It’s a condition which comes in many forms; more than 100 of them, if you care to count them (which only scientists can), ranging from the waiting-to-fracture bones of osteoporosis to the clenched, swollen fingers of rheumatoid arthritis; grandma’s achey knees which predict rain to the poor kid down the road who’s on crutches thanks to juvenile arthritis. From psoriatic arthritis to lupus and gout and – depending on your specialist – fibromyalgia and everything in between, there really is something for everyone.

I hate arthritis. It hates me back.

I hate what it’s taken from me and what it continues to take. I hate that while it doesn’t define me, it does a good job of trying to. I hate that it makes simple tasks so difficult. I hate that it’s always there, like a black cloud, following me from the moment I wake to the moment I go to sleep. And, thanks to arthritis, that’s not much of a let off in between. It prevails in everything I do; whether I’m shopping, showering or socialising. It makes all three herculean tasks at the best of times. If I can get through one of those activities per day without searing pain, I literally squeal with joy. Suffice to say I haven’t done much squealing since the turn of the century.

Back in 2004 I was given the opportunity to try Etanercept, one of the anti-TNF drugs newly approved for use in patients with rheumatoid arthritis who weren’t responding to conventional treatment. It hadn’t yet been approved for patients with Ankylosing Spondylitis, which is what I had, but my rheumatologist, faced with a suicidal patient (I was talking rationally to my parents about ending my life, that’s how bad things were), asked the local health authority to allow me to try it. It was my last hope. I was 32 years-old, crippled by agonising pain. Arthritis raged through my body, already so frail from two bouts of traumatic bowel surgery.

Etanercept worked immediately. My pain didn’t dissipate completely; rather the inflammation in my sacro-iliac joints was controlled, reduced, whatever. I could walk. That was enough. It continued to work for several years, not perfectly, by any means, but I was able to put one foot in front of the other without screaming in agony. I was able to sit comfortably; sometimes I was even able to dance. It was incredible. It gave me a good deal of my life back, and that was a vast improvement on what I had had before.

Back then, the side-effects of the drug over long-term use had not really surfaced. Patients were just starting treatment; there were no records of long-term use.  After a couple of years of injecting it into my thighs twice a week, the effects gradually began to wear off. I noticed the pain creeping back in places; I wasn’t sleeping, I was having trouble getting out of bed… finally I relapsed so badly I was not only housebound for three weeks, but had to be taken to the toilet, helped out of bed, that kind of stuff. The kind of stuff 90 year-olds in care homes need help with, except I was 35 years-old, newly married. The honeymoon period never even began.

Eventually, the pain settled down. I’d have OK days and terrible days. Good days? I’d get a couple of those a month, maybe three if I was lucky. I dreamt of averaging one good day a week; those dreams are unlikely to be fulfilled as I have since been informed that the bulk of my pain – not the inflammatory pain helped by the anti-TNF therapy – is actually due to scoliosis. Two of them, to be exact.

Gradually, the side-effects for long-term use in anti-TNF therapy became common knowledge. I read a lot. I wondered if I ought to stop taking it. Lymphoma was top of the list, followed by ‘other cancers’. This is on top of tuberculosis, pneumonia, multiple sclerosis and lupus.

I had been experiencing new, unsettling pains. Nerve pain in my neck, excruciating pain in my shoulders, numbness in my fingers, pain in my arms, my hands. I decided to come off the therapy, afraid of what might show up in my next blood tests.

‘As long as I can walk,’ I reasoned, ‘I should be able to manage the rest.’

I didn’t manage the rest.

Not one bit.

I was fine for a week. As in experiencing-the-same-levels-of-pain as-normal kind of fine. Around 10 days in, it hit me, like sledgehammer. I woke up at 4.30am barely able to breathe. The pain engulfed my ribcage, swam out to my shoulders, down my arms, down my legs. My face didn’t hurt. My feet didn’t hurt. Everything else did.

But I hadn’t had any nerve pain or numbness since I stopped taking Etanercept. That told me all I needed to know. However, the flipside was that I couldn’t walk, couldn’t even sit on the toilet without screaming in pain. My hips just gave way half way up the stairs. Gautier was at work, so I sat there for about an hour, crying with the pain, wondering whether to continue up or go back down. An hour later, I was down, sweating and puffing and clutching the banister. It was not a good look.

I could barely hold a cup of tea. I cooked dinner in tears; I bathed in tears, I had nightmares so terrifying I woke myself up yelling ‘No! No!’ at awful things I could barely comprehend I was dreaming about.

In short, it wasn’t really going to plan.

On day 12, I started injecting again.

On day 14, I started to feel a bit better.

On day 16, I managed to walk around, to sleep (and boy did I sleep, after all that)

Three months later, I’m back to where I was before I came off it, but with a massive fibromyalgia flare-up thrown in.

Healthy people have choices in life. Chronically sick people generally don’t. Choosing to come off a drug because I am more afraid of cancer than I am of not being able to walk was my choice. At least I thought it was my choice, yet I was in such terrible pain without it that I thought, ‘I’ll have to risk cancer’.  So now I await my fate, in pain. Will it be lymphoma? Will it be skin cancer? The stress of thinking about all this just feeds the disease; the stress itself will probably cause cancer.

It’s not much fun.

Which is why I write about llamas and Tom Cruise and all the other things which take my mind off the fact that my body is falling apart, that thanks to the scoliosis and the fibromyalgia, I’m not getting any better, I’m actually getting worse.

I went out to buy a cushion today. Yes, you read that correctly. A cushion. Well, two cushions. Actually, it was four, but turns out I only needed two (everything I order online ends up being gargantuan. It’s an affliction in itself).

Anyway. I’d toyed with the idea of getting the bus, which would save me walking, but I had to drop an ebay parcel off  – beautiful 1950s stilettos which I sold because I don’t go anywhere to wear them, another reluctant realisation, another nail in the coffin. So I drove.

I dropped the parcel off. I headed into town. Roadworks sent me in the wrong direction and I ended up having to park a mile from where I’d planned to be. A mile! Good thing I’d brought my bus pass. I got the bus to the shopping centre. I hate shopping centres. I mean, really hate them. The lights, the people coming from all directions, the wailing kids, all the rubbish stuff for sale (I am not a fan of modern clothes, which means unlike most women, I can’t bear shopping. True story).

I arrived at the shop. Along the way I’d decided that I was desperate for the loo. I have an internal J-pouch after surgery for ulcerative colitis, so when I need the toilet, I really actually need the toilet. Like, now kind of need it. My hips hurt. It was all going a bit wrong.

Naturally the customer toilets I’d been so relieved to see were out of order. But of course! The main toilets in the shopping centre were a good five minutes’ walk away. Well, they were for me. Two minutes for anyone without raging hip pain. I nabbed a sales assistant:

Me: ‘Excuse me, I see that your customer toilets are closed. Is there any way you could let me use the staff toilet? I have arthritis in my hips and it’s a long walk to the public toilet and I’m about to burst.’

Sales Assistant: ‘Sorry, that’s not allowed. You have to use the ones upstairs. They’re the nearest ones.’

Me: ‘Oh. OK. It’s just that it’s very painful for me to walk. I’m a bit slow, and I’m really, really desperate.’

Sales Assistant, pointing at the exit: ‘You poor thing, my mum gets arthritis in her knees, I know what that’s like.’

Me: ‘No, actually, I don’t think you do.’

With that I gritted my teeth, clenched my buttocks and made my way through the home furnishings department, out of the store, up the escalator, past four more big shops, turned left, walked for just over a minute and finally arrived at the public toilets at the exact point I thought, ‘I am actually going to have an accident if my hips don’t disintegrate first.’

I didn’t have an accident, but I might next time.

Raising awareness of chronic, painful conditions means reaching beyond those afflicted by it. It means changing people’s perceptions of who has arthritis (if I hear ‘You’re a bit young to have that’ or ‘My nan has arthritis’ again I will scream). This is why I usually write silly stuff instead of serious stuff, although I always touch on the conditions from which I suffer. It think it works. Writing about being ill only serves to attract other ill people, and they already know what it’s like to be ill. Writing about llamas and Tom Cruise, on the other hand, with a little bit about being ill somewhere in the middle, does the trick.

I’ve proven that theory by writing ‘Mostly Cloudy with Some Bright Spells’ in the same way; fun, ill stuff, adventure, nuts stuff, ill stuff, hilarious stuff, ill stuff. Funny, sad, funny, sad, funny, sad and ends on optimistic, spirited and really rather silly note. It is a story about a person, not an illness. Arthritis is a part of my life. Colitis is a part of my life. Scoliosis and fibromyalgia are all parts of my life and while they jostle for second position, I remain in the lead. I stay, to what little extent I can, in control.

Half the reviews for ‘Mostly Cloudy’ on Amazon are from other very ill people who say the story resonates with them. The rest of the reviews are from the luckiest people in the world; the ones who are healthy. They are humbled, informed, less quick to judge and I hope, more willing to help.

So the next time you think, ‘Why doesn’t she complain more about pain and stuff, like other bloggers do?’ there’s your answer: if we’re going to have any hope of changing attitudes about arthritis and other chronic conditions, we have to start with our own.

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