Chapter 7: Bionic Bum Fun

‘You have Ulcerative Colitis. We’ll send the biopsies off to the lab to confirm.’ 

Never heard of it? Me neither, back in November. But after having fainted pre-procedure from either concerning consent forms, needle-nerves, or maybe just cumulative fatigue, I was just glad to finally have a diagnosis. Aside from the discomfort, it was quite the experience seeing my insides via HD video; the first of an extensive al-bum the NHS would build up over the following months. 

Whatever this UC was, it couldn’t be too serious. A nurse pharmacist prescribed me some once-daily pills and dauntingly large enemas to pump up there every night for a couple of months until things settled. My follow-up appointment was in March. If I didn’t need to see a doctor for five months it could hardly be anything life-changing. It would soon be under control and I’d be off the loo at last! 

Now I had a name for it, I soon found out a family friend’s son had also been diagnosed. And a Premier League footballer, and a top rugby player. They all seemed to be doing well. At last, I was in good spirits. 

Heavy sedation hadn’t yet worn off. It soon did. Toilet trips returned. The first enema returned almost immediately, too. Googling to see if I should administer another, or wait for tomorrow night. Googling causes of UC: unknown. Cures for UC: unknown. 

Suddenly it struck me. The pills, the escaping enemas, they were just starter drugs in a spiral of stronger and nastier medicines, none of which cured my new-found disease. There was no cure, only management. Instead, I saw the word ‘remission’, which I’d only previously encountered when discussing cancer.

There was no cure? F*cking brilliant! With six-feet long, thumb-width cameras, and now added enemas, attacking my backside, not to mention countless seat-down scenarios every day, my arse was so sore it resembled the Japanese flag. But discovering all this tonight made my head hurt, too. 

And there was no bloody cure. Before diagnosis, I’d never believed in crying yourself to sleep. Through previous heartbreak, or mourning, through loss; surely crying had to stop before the other could start. It wasn’t just sadness, but exhaustion which finally blended the two into one. What was most knackering was accepting that this may only be the start. Taking so long, I had mistaken diagnosis as the end-goal. 

Eventually, it could have been at 4am, maybe 5 or 6, self-pitying sobbing soothed into that raveled sleave of care, slumber. Balm of hurt minds (and bottoms), as Macbeth famously mused. 

Up. Toilet. Out, out, damned plop. Morning drugs. Toilet. Out, I say! Work. Loo. Hell (and toilet water) is murky. Work. Loo. Work. Home. Bog. Enema. Bog. Try to sleep. Toilet. Toilet. Toilet. Sleep.

Up, toilet, and repeat. 

This routine continued and worsened. Medicines were escalated as I started a course of steroids¹, and briefly improved, before deteriorating even further. An attempt at a trip to Iceland was destined to be abandoned. Moments after passing through boarding, I dashed back into the airport in desperate need. Back on the plane, landed, then an hour drive turned into a roadside bare-bottom in sub-zero temperatures. A couple of days spent soothing my sore cheeks on a cold North Atlantic Sea toilet seat and I resigned that I needed to go home. 

I was losing blood 30-40 times in a 24 hour period. Not quite Around the World in 80 Dumps a Day, but not far from it. New Year in 2019 was spent in A&E. Sent away with a higher dose of steroids. The result? No improvement whatsoever. Much like high-tech Japanese toilets, I’d resorted to hosing down my ‘flag’ in the shower; toilet roll becomes sandpaper when you see it every half-hour. It was hardly worth me leaving the bathroom. 

I haven’t written much about the pain, but it was a curl-into-foetal-position agony. Arriving in furious waves, gripping my stomach, spreading to my back. The only release was to sprint to the toilet. 

By the end of the week I was finally sat before a consultant at a London hospital. 

‘Sometimes this disease can spiral out of control. We’re going to admit you when we can find a bed tonight, put you on IV steroids. No response to that and we’ll try something called rescue therapy. No response to that and I should warn you now, the last option is colorectal surgery.’ 

Mum had been emotional all week, but was holding it together now. Dad had held it together all week, but succumbed to rarely-breached floodgates when the doctor mentioned surgery. I was just pleased there was a plan in place. As if my next appointment was supposed to be in March… I was 86kg when I finished teacher training. On admission, I was somewhere in the high 60s. At the going rate, there wouldn’t have been much left of me to take to the consultation by springtime.

My first nights in hospital were punctuated by groans and screams of anguish I’d hoped would never be mine. They weren’t yet, but they soon would be. There was an elderly Jamaican man, clearly in agony, fuming at the nurses, doctors, and the world. Old-age always petrified me to ponder, with its promise of loss, dependability, and decline. Death and illness were inconvenient realities I’d prefer to keep at bay. 

Perhaps this is why I like working with young people. In schools, life bursts with the strongest and best of emotions. I tried an office job and could detect days drifting and dying into nothing all too soon. Doctors, nurses: they have a mindset I can only admire and not quite comprehend. They directly combat death, misery and tragedy, and the worst of emotions, on a daily basis. 

Nurses take the brunt of the dramas on the ward. The angry patients, suffering patients, impatient patients and the confused ones. The posh² prat who mistakes St Thomas’ for the Marriott hotel neighbouring the hospital along the Thames. Or the guy whose girlfriend proclaims ‘Bruv, hehehe, put your penis away! Dere’s people dyin’ in here!’. Or even the bloke who blares Jeremy Kyle from his bedside screen (why couldn’t it have been cancelled before I was admitted??), but makes up for it by offering around snacks stolen from the M&S downstairs. 

Five days of intravenous steroid injections every few hours achieved nothing. They did succeed in bloating my face and brittling my joints, however the symptoms were as toilet-terrible as ever. 

Time for rescue therapy: an old form of chemotherapy found to be better for Crohn’s and Colitis than the big C. There’s a list of side effects longer than my large intestine for this drug, called Infliximab. During my first infusion I was meant to be checked every 15 minutes. Linked up to the drip-machine, administration would last two hours. But then, disaster struck. My nurse went for lunch, and the assistant tasked with my monitoring a) Only paid one visit in the first hour and b) Didn’t have the slightest idea what to do when I was curled, groaning in the foetal position, desperate for a toilet trip. Could we unplug the machine providing the infusion? It beeped madly when she tried.

I begged for a bed-pan but the assistant scrunched her nose and admonished, ‘Oh you don’t want to do that.’ She was ignorant to my pain and oblivious to the very real risk I’d make a mess much further-reaching than a bed-pan if I didn’t get to the bathroom right away. Her solution was to unplug the drip for a few minutes while I dashed to the loo. It was all guesswork. Didn’t she get it?! This was rescue therapy. And I wanted to be rescued! It’s well-worth crapping in a cardboard cup to be rescued! Luckily, after the nurse returned, she recognised a faulty battery in the machine and switched that so I could unplug and release the pain freely for the last 45 minutes. 

That night, I was moved from Nightinhell ward to the gastro-specific treatment ward. Finally, I felt in good hands. Over the weekend, the therapy kicked in and the following week, I was a free man, and just in time for my birthday! 

The rescue therapy is designed to last eight weeks per infusion. Within eight days I was back in hospital, where an advanced second dose showed no response, and no rescue. So that was it, last resort: chop out the faulty bits, namely, the entirety of my large intestine. I had exhausted the full repertoire of medicinal options the NHS offers and it was time to meet the surgeon each morning on the ward, instead of the gastro-medicinal team. 

A stoma nurse came to see me to discuss how having an arse in my abs would change my life, and to advise where specifically on my abdomen I’d like this new orifice. I didn’t care about the aesthetics, I just wanted the bag as far away from my business as feasible. I’d read a delightful article online about it sounding like a crisp packet slapping between two bodies. As much as I do bloody love crisps, I’d prefer not to have a packet in my pocket during life’s more intimate moments. 

But then! Before what would have been one of my last meetings with the doctors on the medicinal side of affairs, I was given some industry insight, a beacon of hope, from a lovely pair of elderly Sheilas³. They’d spotted in the newspaper a piece on a new drug for UC and they both cut out the same article for me, just in time, too. It was called Tofacitinib and wasn’t yet fully licenced across the UK, but after initially poo-pooing its chances of stopping me from doing exactly that, the team decided it was worth a try. 

Having never been great with swallowing pills, I choked on the first dose after the nurse branded me a wuss for asking to crush it. After clarifying crushing it was, in fact, a better idea from now on, and cleaning up the puddle of curry that had come up to splatter all over the visitors’ room along with the pill projectile, I went to bed. Over the weekend, the new drug kicked in and the following week, I was a free man, and not just for eight days this time.

This was February. Steroids had taken a profound effect on my body. At its worst, my joints were brittle to the point I required assistance just to get from bed to bathroom. Steroids never allow you to sleep much, but as soon as the intestinal agony had gone, the joint pain arrived to keep me awake all night. I stayed at my parents’ rather than returning to my flat. Mum left my door open so if the standard groans morphed into something worse she could come, or if I needed to get to the toilet, or required more painkillers. Being so incapacitated was frustrating beyond belief. Guilt and impatience filled moments of reprieve from the physical pain.

As I switched from IV to oral steroids and began a slow wean from these dirtiest of drugs, the side-effects began to reside. I was back at work by March to polite, if intrusive, inquisitions from pupils of ‘Sir, what’s happened to your face?’ or later, ‘You look a bit less inflated this week, Sir.’ To match the water-weight retained on my face, I had man-boobs, back-blubber and kankles, standing in contrast to my emaciated muscles. Looking in the mirror, I was unable to recognise to sorry figure scowling back at me with sunken eyes. I bumped into the mum of an old friend. She knew me well from from age eight to eighteen. We chatted with an unusual unfamiliarity for a minute before finally she asked who I was. Graciously, she hid her shock. 

As spring became summer I neared the end of my seven-month, abusive, love-hate relationship with steroids. Everyone at work, staff, pupils, friends outside, commented on how much better I was looking. The issue was hidden. UC is an invisible illness (providing you don’t log my loo-data) and to truly be ‘better’, I needed Tofacitinib to work without steroids propping me up. Within a couple of weeks of breaking up with steroids, I was back in hospital, back at square-one. But they say you should never get back with an ex and the saying rang true. Things just weren’t the same; this time, they did nothing for me.

The next two weeks whizz by in a hazy, unhappy flurry of drugs, consultations, and acceptance that the surgery was the only route out of the disease. UC has no known cure, but as I said at the beginning of this toilet-trip we’ve taken together, body minus colon equals no colitis. 

I told friends how long the surgery could be to responses of ‘Can’t believe you’re going to be under the knife for nine hours!’, ‘So you’re never going to be able to fart again?!?’, and ‘Are you going to be put out for that whole time?’. All I could reply was, ‘I bloody well hope so!’. Another, more understanding, friend, who had undergone a similar operation at the start of the year, told me the epidural insertion was the worst part. But it would only take a few minutes and then I’d be off my rocker on opiates upon waking up. The fact it took around half an hour to successfully fit the epidural really should have warned me not to expect a smooth transition on the other side. 

However, this brings us back to where we started in chapter one and so, we conclude our crude tour of the globe. In the three months since I escaped hospital, I’ve still had pain on many days. But it’s becoming less frequent as I recover. I have a minimum of one more major surgery to come. But I don’t need to think about that for now, so I won’t. I’ve woken up in a tent, covered in you-know-what, and brushed it through my best mate’s hair trying to find tissues and a torch in the dark. But then, Sh*t Happens! On the sunnier side, I’ve also returned full-time to the job I love and been accepted for additional work with vulnerable children, something I would never have had the energy to commit to when fighting daily battles with this absolute minger of a disease. More recently, I’ve even played some tennis, been pissed in Poland, climbed a mountain, regained most of the weight I lost and reconnected with friends who I was too zombie-like to socialise with for over a year. I look in the mirror and, yes, where there could be a half-decent set of abs there is, instead, an arse. Sexy! But that sort of thing means very little. Consumed by illness and gone for over a year, I’m back looking at a version of myself I once again recognise. 

Thank you to everyone who has read, half-read, or commented; I hope you’ve enjoyed the journey! Writing has been an anchor tethering me to my sanity throughout this shit-storm of a disease; it’s been brilliant to hear people say that reading this has, in some small way, helped them deal with their own mental or physical struggles. But an anchor alone won’t help escape the storm; humour has been both the boat and paddle by which I’ve flushed this rough time behind me and escaped shit-creek. Sharing humour with family and friends reinforces that boat, ready for future choppy waters. Now, I’ll let you get back to what you were doing, and I’m off to do something that doesn’t involve sitting on the loo!

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Footnotes:

¹Sadly not the type that supposedly make your muscles big and your penis small. Those are anabolic steroids; I was on corticosteroids.

²I recently discovered via my wise ol’ Grandad that posh stems from ‘Port Out, Starboard Home’ from the side of a cruiseliner which would have the sun for each leg of the journey between England and India back int’ day.

³One was my Nan; one was my ex’s; both were called Sheila. I’m indebted to them both for their efforts reading the Daily Mail. I could never do it. This was the article.

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