Too Cool For Stool: My life with Ulcerative Colitis. 100% non-scientific opinion pieces. Expect pop culture, poop culture(s) and puns.
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Feeling Like a Waterlogged Smartphone
Ch-Ch-Check it Out
“Rice to see you, to see you… RICE!”
Toilet trips continued to permeate the witching hour, as the first flare-up begun its assault on my colorectal region.
I felt a little drained at first, but since Glastonbury, it was becoming the norm. The morning brought porridge for breakfast (because my hospital leaflet said so), and I settled in to my new role as a ‘good patient’: open-minded towards food restrictions, but focussed on being better soon.
But the road to Hell is paved with good intentions, and it didn’t take long for the first steaming dose of Hell to fall into my life in the form of ‘White Rice Therapy’.
Although it may appear to be the latest trend of new-age bullshittery to make your turds turn into sequins or cure your depression by throwing a handful of pudding rice at your face every morning; it is, in fact, the practice of eating nothing but congee rice for two days to help ease your flared-up guts.
Just So We All Know:
Congee (or conjee) is a type of rice porridge or gruel popular in many Asian countries. It’s often served as a main savoury dish, with fish, meat and flavourings added to the rice, or made as extra side dishes.
As congee consists of over-boiled, watery rice, it’s regularly noted as a source of comfort food that is offered to those who feel ill. The ease of its digestion can make it especially good for those who are suffering from a UC ‘flare-up’, as its soft, watery consistency shouldn’t cause too much irritation to the colon or rectum as it passes through.[*]
The Sweet Salvation of Brian Blessed
Congee, according to the hospital leaflet, was to be the backbone of my diet for the next 4-6 weeks, as I recovered from the flare-up and steadily re-introduced foods to the daily menu. The first two days consisted of eating nothing but congee in “small portions 5-6 times per day (every 3-4 hours),” before adding “small amounts of meat and vegetables[**]” during days 3-7. Recovery permitting, I’d be able to gradually “introduce new foods every four or five days, one at a time” during days 7-28. All pretty fair and reasonable, if you ask me…
…until I ate congee twelve times in 48 hours.
The leaflet suggested adding a pinch of salt and a “little butter (no more than 5g)”, but to me, there are no redeeming features to plain congee. Adding a small dash of either was like applying lipstick to swine, and any novelty I had for this culinary adventure was over quicker than the Queen’s Speech on amphetamines. It contained all the joy of nothing with a lack of everything. It was, at best, a culinary vacuum.
Before I get messages from people that touch upon #FirstWorldProblems and the like, the main reason why the congee experience went funhouse mirror so quickly was down to anticipation.
Picture this: Morning porridge aside, your body has spent the last 10 hours draining your body of all food, vitamins, minerals (and a good volume of liquids, too) while you’re supposed to be sleeping. Not only that, but you’ve also lost blood, your large intestine feels like it’s been ransacked by an angry mob[4*] and your backside is as delicate as Donald Trump’s ego. The only food you’re permitted to have is on its way, and it’s smelling pretty good.
It takes a while for congee to be cooked, so anticipation duly builds. Your stomach starts to growl – and the large intestine gurgles and rattles in response. By now, you’re starving… and I mean S T A R V I N G. Yesterday, you were eating whatever you wanted, whenever you needed it. Now, you’re at the beck and call of a modest mound of overboiled rice every 3-4 hours. With this level of hunger, everything smells good. Wait, is that the smell of roast chicken, too?! Nope. All lies. Thankfully, you stop short of seeing everyone’s head as a roast ham or a T-bone steak, ala Tom and Jerry[5*].
Fast-forward by 24-36 hours, and there’s a chance that you’ll start to experience hunger pains when the congee is being cooked. This Pavlovian response to the now-regular smell of rice causes your large intestine to pang with pain and your stomach to rage and cramp with empty, acidic wrath, while the empty-tasting, sans stimuli rice does nothing to quell the internal discord. You can smell the contents of any non-congee foodstuff that’s opened in the house – or at least you believe you can[6*] - and with this being Christmas, that’s an awful lot of packaging, and an awful lot of enticing smells loitering with evil intent. Your mind starts to tally up its favourite all-time foods, leaving you to hold your guts and wince once again…
Christmas Day brought some sweet relief in the form of cooked chicken being added to the rice, but I was still drained, tired, and in need of a toilet trip every waking hour (as well as the occasional sleeping hour, too). Distractions during the festive season were formed in the way of Brian Blessed’s book, Absolute Pandemonium (which is worth buying for the dead cat story alone), and the occasional saunter downstairs to watch a film. Thanks to the 10-second toilet sprints, most films took twice as long to watch, even if it was Flash Gordon.
On the food front, cooked carrot and fish were added with mixed results: the carrot was fine[7*], but the fish was a load of pollocks. To make things worse (and there isn’t a great way to say this); most foods would smell like an intense version of what they originally smelled like on the way in. This was a huge problem when it came to the next meal, because your mind linked the bad smells and experiences to the food in front of you. The result? A wonderful side dish of dry heaving.
Alright, I know this isn’t an enthralling read - actually, it’s pretty turgid – but it would be wrong to represent UC without it. Many people tend to experience fatigue when dealing with a flare-up, so there can be a lot of sleeping, sitting and lying down to go with the unglamorous toilet trips.
With the time between the diagnosis and the flare-up being relatively small, I’d barely had time to get to grips with what having UC could really mean throughout the rest my life – after all, it’s a hefty conversation to have. The leaflets I’d been given by the specialist were confusing to read (I’ll come back to this later), and the other medical staff I’d encountered thus far seemed to sum up UC life with a collective shrug of the shoulders. If UC had a middle name, it would be “meh”.
But when you’ve got a potentially life-threatening medical condition, being aloof can only last for so long. The specialist had given me the number of the IBD nurse to call when/if[8*] things got worse, which already seemed like a dead end: this mysterious nurse had failed to materialise when they were called incessantly after the colonoscopy, so how on earth was I going to get through by leaving a message on their ‘Emergency Answerphone’ during Christmas and New Year? I hate leaving answerphone messages as it is…
Firstly, we had to navigate our way through Boxing Day, and by ‘we’, I mean my Mum and I.
Wait, you still live with your Mum?!
Yes. I am the clichéd ‘man in his thirties living with his Mum’, minus the basement dwelling, incessant trolling of celebrities on Twitter and wearing nothing but pants all day.
A couple of points:
1. I’ve lived on my own before (and would love to do it again, thanks for asking).
2. If I had my own place when the UC diagnosis arose (which I didn’t – I’d moved back home a long time before the UC happened), I probably would’ve had to move back home/sell the house eventually because of what happens to me later... #Spoilers
Being in the family home turned out to be the best place to deal with my UC, despite it being perceived as an ‘embarrassing social stigma’.
Anyways, back to the story…
Boxing Day brought more congee and the first glimpses of another symptom of UC: isolation and loneliness. Football became a lifelong lover when I was seven years old, and since my mid-teens I’ve been a season ticket holder at my beloved football club.[9*] In football, Boxing Day matches are as traditional and symbolic as an embarrassing England performance at a major tournament, while providing some with a fleeting shot of festive merriment and optimism in a season destined for relegation. Being left behind while some of the family headed off wrenched my gut further and left me feeling imprisoned, dulled and dislocated. Football is my religion, and I’d missed its midnight mass. With more games planned during the festive season, it was bound to be the first of a few missing matches.
The evening brought more rattling, rumbling, aching, burning and trembling from the transverse colon as the sealed packets of mini scotch eggs and cocktail sausages[10*] were unwrapped in the kitchen, while I joked in the bedroom that my mass consumption of rice made me feel like a waterlogged smartphone after it had been dropped in the toilet and hurriedly buried in a bag of basmati rice to help it dry out.
Despite the jokes, my physical condition was beginning to deteriorate. Repetitive trips to the toilet were causing my lower back and legs to ache, while the rolling fog of fatigue was causing my brain to slow down, leaving me feeling confused. As my weight begun to drop, I felt increasingly susceptible to the cold.
At this moment, I was heading to the toilet between 12-15 times a day and losing a pound of weight in the same timeframe. Bearing in mind I was already down to 9 stone (from the usual steady 9st 6lbs) before I begun flaring up, it didn’t take much effort for my body to start flagging.
Those toilet trips would normally go something like this:
0 mins: Sprint to the toilet.
0 mins 10 secs: Sat on the toilet. Nature (UC) takes its course.
20 mins: Feel that it’s now safe to get back off the toilet.
22 mins: Lay back down.
32 mins: Finally feel that another trip to the toilet isn’t forthcoming.
35 mins: Sleep.
65 mins: OH SHIT I NEED THE TOILET.
[Repeat ‘til body fades away]
Even the idea of spending time away from the bedroom (or bathroom) all too literally felt like a step too far at this point, as the triple-threat of toilet trips, tiredness and pain chastened the days. In the splintered week between Christmas and New Year, I became accustomed to snatching moments of sleep instead of proper slumber, which would’ve been fine if I was looking after a new-born baby; however, I was trying to pacify a colon acting like an angry toddler.
The far corner of my bedroom temporarily housed a set of empty Firebox boxes, brandishing the company motto ‘NOT FOR EVERYONE’ in bold, black lettering. From my position in bed, the wording had been obscured, leaving me to regularly stare at a message seemingly left by the universe, or by an avid fan of The Simpsons:
I’d often shut my eyes and hope this modestly-sized reminder of brand identity turned out to be true.
Meat and No Veg
On one morning during this splintered week, my phone rang into life. It was the IBD nurse returning my rambling ‘Emergency Answerphone’ message. As this was my first point of contact with the IBD team, I was a little unsure what to expect; but what I heard next was something that sounded beyond all realms of impossibility. It went something like:
“Don’t worry, you can eat pretty much all of what you’d normally eat over Christmas; just avoid the tough, stringy bits of meat like beef, and fruit and veg with seeds, tough skins or ones that produce lots of wind like apples, strawberries, broccoli, sprouts and cranberry sauce; and don’t eat anything with nuts or different kinds of spices in them, like mince pies and Christmas cake – pretty much anything that’s going to be tough to digest, give it a miss. Apart from that, you can have your roast potatoes and your Yorkshire puddings, as long as they’re not too crispy. Oh, and make sure to give alcohol a miss, too. I’ll arrange for you to see me as soon as we can in the New Year, and I’ll arrange for you to get a blood test done soon, too.”
Hang on, what the fuck?!
Why am I being told that I can pretty much eat a normal Christmas dinner[11*] and carry on eating a reasonable range of foods when the leaflet I’ve been sent from the hospital says to eat fucking rice?! Didn’t you hear me? I’m HAVING A FLARE-UP. I can barely get around the house, let alone get to a phlebotomist for a blood test! You’re telling me the opposite of everything I’ve been told and/or read! I’ll say this again once more with extra full-stops for emphasis:
WHAT. THE. FUCK?!
It would be a few weeks before I’d meet the IBD team, so the clever thing to do at that moment in time was to ignore everything the IBD team had said and carry on eating the devil’s wet dandruff… I mean, congee. After all, I had two leaflets that told me exactly why I needed to eat congee, so it made sense to carry on using them. They were from an actual person I’d met at the hospital, so why wouldn’t I trust them? I went back to the mindfulness colouring book I’d been given[12*], and looked forward to my next scoop of rice and chicken.[13*]
By the evening of New Year’s Eve, any preconceived notions I had of this flare-up being a bit of an interesting novelty had worn thinner than having to hold hands with a clammy stranger during Auld Lang Syne. I was concerned, worried, confused, tired, aching and continually starving.
The taste of congee, chicken, cooked carrots and fish made me gag. The blandness made me gag. The repetition of the taste and the blandness made me gag. There was no comfort to be taken from food; no salvation or solution. Everything had to be forced down with ever-increasing amounts of water, and everything smelt the same, whether in bathroom or on plate. I felt sick.
Then, as the fireworks began to pop from a neighbours’ New Years’ party and 2016 began, I found a lump in one of my testicles.
This wasn’t my first ballbag rodeo: I’d been checked at two other occasions; once when I was 15, and the other when I was 24. The first time was terrifying, whereas the second was far more routine; although I managed to make my GP (the ‘I’m right handed’ one) laugh, because I asked for the blinds in the examination room to be shut:
“Who’s going to see anything?!” he laughed, which, I now realise upon writing this down looks either: a) deeply sinister, or b) like a massive insult toward the size of my potatoes. In reality, it was a comment about how dark it was outside (it was about 5pm in mid-December) rather than anything else, but it still made me want to sink into the floor.
Thankfully, both of my previous encounters had shown the baffling bumps to be cysts, but this one felt different, swollen, weird, harder… Bad. Whether or not it was due to the loss of weight, it made sense in my mind that, due to my current condition, now would be the perfect time for my body to give in to something malignant. After all, I could only be given the ‘all clear’ so many times, right?
Just So We All Know:
Epididymal cysts (to use its full name) can occur near the top end of the testicle and are non-cancerous. The cysts are fluid-filled sacs that don’t often require surgery, although some larger cysts can cause pain and require removal or drainage.
An epididymal cyst is described as smooth, fluctuant (like a water-filled balloon) to touch, and – crucially – can be felt separately from the testis itself. Cancerous lumps in the testicles aren’t able to be separated from the testis and feel more like hard, knobbly growths.
Fewer than 4 in every 100 testicular lumps (4%) checked in the UK are cancerous, while survival rates for testicular cancer are high. Find out more by reading Cancer Research UK’s informative guide.
Despite the statistics and previous experience, I shuffled out of the bathroom feeling dazed and numbed. I went and sat on my Mum’s bed, told her what had happened and stayed there, motionless, for what felt like an eternity. No words. No resolutions. No visions for 2016. For the first time in a long time, I felt truly alone.
* Although, like always, this will vary from person to person. [Top]
*** I’ve never eaten currywurst, so this wasn’t a major cause of distress. [Top]
4* Appropriately sized, and all carrying pitchforks and flaming torches. [Top]
5* Which, I’m sure will be a double relief to any of you non-meat eating people out there. [Top]
6* I mean, everyone knows what a pack of cocktail sausages sounds like being opened, right? Right?! [Top]
7* Although being a raw carrot fan, swapping one for the other was as disappointing as finding your new phone had Snake 3D on it instead of the original Snake. (If you’re too young to get that reference, ask someone who is aged 30-50 and watch their eyes well up. If you’re aged 30-50 and don’t get that reference, then you probably had a Blackberry instead of a Nokia. You disgust me…) [Top]
8* It was definitely a ‘when’. [Top]
9* If you want to know who it is, it really won’t take many curious clicks to find out. [Top]
10* Note to self: Buy cocktail sausages ASAP. [Top]
11* And let’s be honest: pretty much all of the best bits of a Christmas dinner… [Top]
12* This was a lie. I tried colouring in one picture during that time, but it took forever and I ended up more annoyed and stressed than when I started. [Top]
13* This was also a lie. I did, however, fill in a membership form for Crohn’s and Colitis UK, as I felt that it would all come in handy at some point… [Top]
Relevant links to places that are far more important:
THE SONG SUPPOSITORY
To shake rears, apply liberally to ears.
This week on The Sound Suppository, we have the world’s worst pun sub-header (Supercalifragilisticexpialidocious), some horrible song title imagery, thanks to Johnny Cash and Ben Howard, and a brutally painful tune from the sorely missed Distillers (The Hunger).
Get clicking below to enjoy the full Stool mini-soundtrack experience!
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Oats In The Water
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Flushed From The Bathroom Of Your Heart
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