Too Cool For Stool: My life with Ulcerative Colitis. 100% non-scientific opinion pieces. Expect pop culture, poop culture(s) and puns.
Image: They're There
Ch-Ch-Check it Out
“The Inflammation (from Ulcerative Colitis) usually begins in the rectum and lower colon, but it may affect the entire colon. If Ulcerative Colitis only affects the rectum, it is called proctitis.”
“Viruses, bacteria, diet and stress have all been suggested as environmental triggers (for Ulcerative Colitis), but there is no definitive evidence that any one of these factors is the cause of UC.”
Taken from pages 4-5 of Crohn’s and Colitis UK: ‘Ulcerative Colitis – Your Guide’.
Even though it took nearly two years to be diagnosed with UC, I’ve never given much thought to the idea of whether or not I’d be ‘better off’ if it had been caught earlier. For starters, you can’t go back. Secondly, the doctors never suspected anything; thirdly, I’d never heard of UC until I was diagnosed; and finally, I was more concerned that it might have been something cancerous. My Dad died of bowel cancer when I was fourteen, so I’ve always been keen to have anything suspicious checked out.
Just So We All Know:
Ulcerative Colitis is not a form of cancer. If you have pancolitis (like I do), which affects the entire large colon and rectum, there is a greater risk than normal of developing cancer in the colon or rectum after 8-10 years of having the illness. The chances of developing bowel cancer from IBD is very small, and, encouragingly, the chances of IBD patients developing bowel cancer has declined in recent years.
There are a wide range of factors that can potentially alter the odds of developing any form of cancer - just like any healthy human - but it’s always worth reading this PDF factsheet from Crohn’s and Colitis UK about bowel cancer if you feel concerned.
Highway To Faecal Hell
Like any time I’ve ever headed off to a music festival, I was a mixture of nerves, excitement and an unhealthy dose of mild stress as I met up with my mates the night before heading down to Somerset. Apart from a mild grumble from my gut midway during the evening, everything seemed to be slowly unwinding and settling down.
After another traditional 1 hour of pre-festival night’s sleep dealt with, and with everyone wearily getting ready for the day ahead, it soon dawned on me that I needed the toilet. Now. Thankfully, unlike my own abode, there was more than one toilet available. Unfortunately, I wasn’t aware of this until after I’d started to experience an intense panic within my brainbox that rapidly enveloped the rest of my senses.
As I politely pleaded one of my mates to show me where a spare toilet was, my body temperature rocketed, I broke out in a cold sweat, and I did all I could to not claw at the walls and scream in intense panic. Why was this happening to me? Why now?! If I didn’t make the toilet in time, my life as I knew it would be absolute garbage. I’m not one to encourage nuclear Armageddon, but at that precise moment, I would’ve gladly taken a direct hit from any stray nuclear warhead going than have to spend another second fearing that I was about to unleash faecal hell on anything nearby.
Mercifully, I get there just in time. Any chance of having a moment to reclaim my senses was erased when our taxi arrived hot on the heels of my arrival to the throne. In hindsight, I would guess that the food and alcohol I’d consumed the night before had irritated my gut no end. Back then, the best I could hope for was to clean up the toilet as best I could, and hope the smell would escape through the window as quickly as possible. (Spoiler alert: It didn’t.)
Throughout our journey to the coach pick-up that morning, I felt like I was about to go again. Eventually, after what felt like a lifetime, we arrived at the pick-up location, and, almost immediately, I needed to go again. I don’t know if you’ve ever tried to find an open toilet in a typical city/town centre somewhere between 6-7am on a weekday, but it ain’t easy. I’d go as far as saying that you’re probably more likely to find a BNP member at a Black Lives Matter rally than an open lavvy nearby.
As I eyed up a museum and an open-topped bin across the road as my only possible options, I suddenly realised we were stood next to a five-star hotel that was undergoing extensive building work. After finding out how long we had before the coach arrived, I ran for the tradesman’s entrance with a heavy dose of innuendo looming overhead and searched for the nearest toilet inside. I fully expected to be accosted by a member of staff, but the nearest I came to seeing another human being was by quickly glancing at the vast photo gallery of celebrities who had graced this fine establishment on a nearby wall.
With the timer on my phone ticking down to our departure time, I locked myself in a toilet cubicle and prayed I wouldn’t miss the coach. What was going on?! After taking a few pieces of super-quilted toilet paper with me (heck, I may as well take a little luxury with me, right?) and briefly falling in love with the smell of their hand wash, I swiftly left the hotel and elected to stick to water until we were on site.
One of my gastroenterologist specialists once told me that if you’re ever stuck in a diarrhoea dilemma, the best thing to have is a bottle of cola and a packet of ready salted crisps. They’ll help replenish your body’s salt and sugar reserves, and give you a little bit of hydration and sustenance to keep you going in the meantime.
Shaturday Night's Alright (I Guess...)
For the rest of the week away, I felt drained (all too literally), miserable and mildly humiliated. Here I was, at one of my favourite places on earth, and felt like I didn’t really want to be there; but at the same time, leaving would’ve made me feel worse. There are far worse predicaments to be stuck in, but right then, I was feeling somewhere in-between ungrateful and unwanted.
Things came to an unpleasant crescendo during the early hours of Saturday morning; or as I now call it, ‘Shaturday’. I’d just woken up from my obligatory festival night terror (I normally have one per festival appearance - it’s quite the skill…), and realised that I urgently needed the toilet, and had about 30 seconds to get there. As the nearest loo was (with a kind wind) about two minutes away, I frantically threw everything inside my modest tent to one side, grabbed a bin bag, put my travel torch in my mouth… and went in the bag.
Oh the glamour.
I didn’t have to share that information – and I’m sure plenty of you would’ve been happier if I didn’t – but when you’ve got UC, this is the sort of scenario you can readily find yourself in. With UC, shit happens, and when it does, you don’t often get long to prepare. Once again, I felt deeply humiliated, but at the same time, a little proud with how quickly I dealt with the impending horror.[*] There was only a very small amount to clear up (bin bags aren’t known for their rigidity…), but it was fine. With a recent downpour turning the site into a mini mire, I’d probably stepped in worse without knowing.
With my dirty deeds all (quadruple) bagged up and binned, I wandered over to the medical tent to see if they could offer any help, but received a look of ridicule and a map to the nearest pharmacy. As the stragglers of lock-jawed ravers stumbled past me on their way to their tents at sunrise, I felt thoroughly isolated. Every leaden step I took seemed to take me further away from a solution. How could I explain this to anyone, especially as I had no idea why it was happening? I could guess, but none of it seemed to make any sense.
The location of the Welfare centre, at the opposite end of the vast Pyramid stage site, atop a deceptively steep hill inside the Eavis’ farmhouse, can feel like a mini-pilgrimage. It was early afternoon on Shaturday, and amongst the roaring, trundling trucks and tractors that kicked up unholy amounts of dust from dazzling white concrete into eyesight on a deliriously hot, sunny day, I finally found my saviour.
Carrie[**] was the zen-like shelter from the storm that seemed to be following me around like an all-too-literal bad smell. Not only was she a counsellor, she was also a GP, meaning that she could put both my physical and mental troubles at ease in the time it took to watch a group perform on one of Glastonbury’s vast array of stages. For the rest of the weekend, I stuck to what turned out to be something quite similar to a Low Fibre Diet and consumed more tea than booze.
That’s not to say that the weekend was a write-off; I still thoroughly enjoyed the likes of Wolf Alice (twice), Run The Jewels, Slaves, Young Fathers, Lionel Ritchie, Kate Tempest, Circa Waves, The Who and (yes) Kanye West amongst others. If you fancy checking out the full list, you can find it here on Spotify.
When it was time to return to the real world on Monday, I decided not to eat anything substantial until I was home, meaning it was 5pm before I had my breakfast.[***]
The reason why I decided to go into overshare overload at this point is to show how disruptive, draining and demoralising UC can be when placed in a (relatively) normal environment. Although I've officially 'had' UC for nearly 18 months (in April 2017), none of the intense feelings I felt during that fateful week in 2015 have dulled, despite now having the knowledge of what my condition is, and what it can do. For me, I felt like an outcast throughout the entire summer.
On top of struggling with depression and anxiety at various points throughout my life, I was now struggling to control my bowels. I’d become as nervous as a stinking, shitting dog. There was no feasible explanation; I’d become useless. I was something for people to become embarrassed about being linked to, and something for others to laugh at whenever I needed the toilet. If feeling constantly mortified and desperately apologetic didn’t finish me, the stigma of soiling one’s self most certainly would.
During the next few months, the ‘margins of error’ between needing – and reaching – the toilet continued to reduce, increasing my fears once again. It was time to visit the doctors to face the finger(s) of truth once more; however, this time, there would be reasons to feel squeamish about my future...
* On the plus side, I can now add ‘Works well under extreme pressure’ to my CV… [Top]
** Name changed for privacy [Top]
*** It may have been all for nothing, as our bus driver in Milton Keynes nearly killed us all by hilariously forgetting to brake at a roundabout in heavy traffic… [Top]
Relevant links to places that are far more important:
THE SONG SUPPOSITORY
Glastonbury 2015 Full Sets Special
BBC Introducing Stage, Friday
Back in the days when EE didn’t know that they might blow you up with their portable chargers, having one of those handy to check for one of Glastonbury’s many secret gigs on your smartphone wasn’t a bad idea at all. Circa Waves’ summery indie pop was an ideal way to break yourself into three full days of live music worshipping, and a worthy reason to keep the phone topped up for the whole weekend, just in case…
Park Stage, Friday
By balancing a setlist that straddles shoegaze, pogo-friendly pop and whiplash-inducing rock, Wolf Alice strengthened their ‘future headliner’ credentials with a set that belied Friday afternoon’s showery onslaught. A year on from their soggy shenanigans, the overwhelmed quartet would find themselves playing the Pyramid stage – exactly where their music deserved to be.
Other Stage, Shaturday
The Mercury Music Prize judges love them, Gareth Gates thinks they’re “shit”, and the organiser of the Reading and Leeds festival thinks they’re “absolutely insanely good”. To call Young Fathers a “Marmite band” would be an insult to their politically-charged electronic hip-hop and to yeast extract alike. Equally provocative and primal, a 50-minute spell with Young Fathers should never be overlooked.
Park Stage, Shaturday
Part social commentator, part poet, part spoken word artist, part playwright, but always 100% brilliant, Kate Tempest is someone who can dizzy you with words for an hour and leave you inspired and reborn as a person. Like with all of the artists on display here, a simple YouTube clip doesn’t do it justice, but Kate is someone repeatedly worthy of your fullest attention.