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

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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’.

C7JE3T_2341066b
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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Accidents, Emergencies, Rubbery Sandwiches & Hula Hoops

Things have changed.

Again.

I ended up in A&E last Friday evening. I was parked up on a trolley outside someone’s cubicle clutching my left arm. Sometimes I let go of it, just to keep myself occupied. Here’s the proof. At least my nails look nice:

Pfffft.
Pfffft.

Over the past year or so, I’ve had shooting pains in both arms. My rheumatologist dismissed them in a letter to my GP as ‘a few aches and pains’, whereas I saw them as a bit more than that. I didn’t think new pain was something to be sniffed at, not when it first started, and not a year later when the pain in my neck was so bad it would make me cry.

In October, the shooting pain in both arms turned into a dull, cramp-like ache in my left arm. My elbow and wrist felt as though I had burnt them with cigarettes, my fingers felt numb and were freezing cold, and it was as though I had been punched in the upper arm and underneath simultaneously. Having read everything there is to read about fibromyalgia, I thought it must be due to that. Still, nerve pain and an inability to use my arm by the afternoon due to the pain and numbness warranted more of an explanation. I can’t just not use my arm. That’s not normal. I can’t just say, ‘Oh well, I’ve got another one’. I’ve been unable to make dinner, clean the house, drive Bumblebee, type (I’m writing this over two days, sometimes with one hand) or hold a cup of tea. That won’t do.

I ended up in hospital because the pain was so excruciating that I couldn’t bear it, and I was scared. I spent three hours on a trolley without seeing a nurse, other than to be asked what my pain score was out of 10. ‘9.5’, I told her. I thought she would come back with some pain relief, but she didn’t. I was asked to move to a chair, but told I’d be there for at least two hours. I opted to save my back and stay relatively comfortable, thank you. Bored, frightened, hungry and hurting, Gautier went off to find a vending machine. He came back with a photo of said machine on his phone, so that I could choose a snack. He is a bit of a genius. I went for plain Hula Hoops. I love a Hula Hoop.

Yum
Yum

So I sat on the trolley, eating said Hula Hoops, wondering if I’d not have been better off doing the same at home, but swapping the trolley for the sofa. It seemed a bit pointless being in hospital just to be completely ignored. In the end a consultant popped by, did a few things to my arms (hit them with sticks to see if they were dead, stuff like that) and at one point stroked me with some cotton dressing, which was quite nice. I could feel everything, so my arm wasn’t about to drop off, but I still wanted to know what was going on. ‘I want to know what’s going on,’ I said, through a mouthful of potato snacks.

We were told to come back for an urgent MRI scan in the morning. Probably something to do with a disc in my cervical spine putting pressure on the nerves. Made sense. I climbed off the trolley, and we got a cab home. Spending £15 on the cab hurt even more than my arm did.

On Saturday morning we arrived at A&E at 9.00am, as per our instructions. Of course, there was no record of me having been in hospital the night before, and no booking of an MRI scan. I wasn’t even surprised. We were sent down to X-ray with a bit of paper and after handing it to someone at the reception desk. He said, ‘MRI is that way,’ pointing down the corridor, ‘but it says you need a CT scan as well and that’s done here. I’ll sort it out, take a seat.’  We sat down and waited. An hour passed. I decided to investigate. By this time, someone else was in charge.

‘The computers are down,’ he told me. ‘Where’s your piece of paper?’

‘I gave it to the other bloke an hour ago,’ I said, my blood pressure rising.

‘I don’t know where it is,’ he shrugged. ‘Let me see what’s going on.’

I rolled my eyes at Gautier.

‘Yeah, you need to be in the MRI department,’ I was told. ‘They were waiting for you, but now the appointment’s gone.’

‘Brilliant!’ I exclaimed. ‘And my bit of paper, where’s that?’

‘I dunno,’ he said, ‘That’s gone.’ He genuinely seemed a bit embarrassed.

Gautier picked up my coat and my bag and we walked for about seven hours through the bowels of the old hospital, up stairs, down stairs, outside, back inside and wound up where we started. The hospital is old and creepy; it reminded me of the boiler room where Freddy Krueger takes Nancy in A Nightmare on Elm Street. I was half expecting Freddy to pop out from behind a clinical waste bin.

'An MRI, you say?'
‘An MRI, you say?’

Eventually, we found the MRI department. My appointment was re-booked for 11.30am. It was 10.45am. We sat, again. I had brought six magazines with me (our neigbour, Maureen, who works in the corner shop saves the glossy magazines from the Sunday papers for me. Every Monday morning there is a comforting thud at the front door as they are posted through). I picked up one of them and started reading, fancying that I’d not have the time to finish it and we’d soon be home.

At 11.30am I had the scan; in the midst of the fourth scan I experienced a coughing fit. A coughing fit in an enclosed tube does not do wonders for claustrophobia. It is like a wimpy version of being buried alive.

220px-Wiertz_burial

Eventually, I was yanked out.

Gautier and I were sent back to A&E to wait for the results. I thought it might take half an hour, an hour tops. He went to find some food. Egg sandwiches, this time. They were pleasant. I finished the magazine and started another. We talked a bit. I held my arm, because it hurt. After an hour, I asked a nurse how long we’d have to wait.

‘Not long,’ she said, taking my blood pressure even though I wasn’t actually waiting for treatment, just for someone to look at some photos of my neck and point at stuff if it was there. I think she could see that simply by having to wait so long, my blood pressure was going off the scale.

At 5.30pm – all six magazines later – we were called in to see the doctor. Imagine my delight when he pulled the scan images up on to his computer screen and then said, ‘I don’t know how to read these, so I’ll need to find the radiologist.’

I kid you not. It was like sitting in front of  Dr Spaceman from 30 Rock.

'I've come to look at your scan...'
‘I’ve come to look at your scan…’

So we sat. Again. We read the signs on the walls, counted the stains on the floor and Gautier found a way in to the hospital’s WiFi without paying for it. I went outside to text my mum. It was her birthday. I came back in. Eventually the doctor came back. He’d spoken to the radiologist. Apparently everything was ‘normal’. I was sort of glad; I didn’t exactly want to hear that I had a tumour sitting on my spine, nor did I want to find out that I had permanent tissue damage. However, I still didn’t have an explanation. At least Gautier could take photos of stuff, which kept us amused.

Next stop, X-ray! (A CT scan was deemed too fancy).

At 7.30pm, after going back to the X-ray department and then back to A&E, we were given a packed lunch bag thing containing the following items: a Muller toffee yogurt, a little carton of apple juice, a cheese and pickle sandwich, an apple and a Kit-Kat. I thought that was brilliant. I then got some codeine phosphate for the pain, which wasn’t brilliant.

‘I can’t take opiates,’ I’d told the doctor. ‘They make me really sick.’ Seems I had them anyway.

I think we got the food because we had been there for 10 hours and they didn’t want us to die of malnutrition and then get sued by our parents. Here is my cheese and pickle sandwich (it was terrible, like chewing my way through fragrant rubber, but as dad would say, ‘It’s free, eat it!’):

OId Chinese racist joke: 'This sandwich is rubbery!'
OId Chinese racist joke: ‘This sandwich is rubbery!’

The X-ray was also inconclusive. An appointment would be made with the neurologist in the New Year. I was free to go. Gautier picked up the remains of my packed lunch/tea, my coat and my bag. By this stage I was in so much pain I was wondering how the heck I’d drive home. My head was spinning from the codeine and I feared that the sandwich would reappear at any given moment.

We got to the car. I felt terrible. Not terrible enough to pay another £15 for a cab, though. I started the engine.

‘I’ll do the handbrake and the gears,’ said Gautier, flexing his right hand, ready for action.  ‘Let’s go.’

‘Hang on,’ I said, ‘What’s that on the windscreen?’ He got out of the car and retrieved a piece of paper from under the wiper.

‘It’s a parking ticket,’ he said. ‘Brilliant.’

I was hoping he’d confused a flyer for a car wash with a PCN, but no. I’d parked in a pay and display bay opposite the hospital. There was a sign half way down the road that told of work by British Telecom. I had seen it on our way in, and thought it had said, ‘No parking Sunday to Wednesday’. Given that we were on Saturday, I thought that was fine. It actually read ‘No parking Wednesday to Sunday’, which meant that it wasn’t fine at all. Yet nowhere along the road was there any sign of any tarmac being dug up, BT vans attempting to shunt Bumblebee out of the way, nothing. And since when did BT work on a Saturday and Sunday? I don’t think they even turn up on a weekday.

We were instantly £35 lighter. It would have been cheaper to get a taxi both ways.

‘All we need now is to be locked out when we get home,’ I chirped, sarcastically.

I think you know what happens next.