Too Cool For Stool: My life with Ulcerative Colitis. 100% non-scientific opinion pieces. Expect pop culture, poop culture(s) and puns.
Image: Pixabay/They're There
Sheer Shart Attack
Ch-Ch-Check it Out
Despite last night’s testicular trauma, New Years’ Day morning began much like everyone else’s: the day felt the same as the day before, only with a leaden sensation of a heavy night for added company.
Since the startling beginnings of the flare-up on Christmas Eve-Eve, I’d nearly lost a stone in weight, so I also felt comfortable in being able to jump on the hollow ‘New Year, New Me’ bullshit fads that occur ad nauseum every year. Plus: like many others, I spent a fair bit of the day loitering around the toilet bowl, although, for the mean time at least, I was only dealing with food ejection from one end…
The new year soon brought its own challenges: the first five weeks of 2016 would find me regularly explaining to nurses, specialists and secretaries on the home phone[*] that I feel unable to get to places for tests, and that I needed home visits whenever possible. This part was particularly stressful, as I was made to feel like I was ‘playing up’ my symptoms and that my condition of urgently going to the toilet approximately 15 times a day was trivial at best.
For the medical staff, I was “only” a 20-minute ride away from hospital. For me, it was an indeterminate wait for either a taxi/lift and the fear of needing the toilet before we set off, followed by an anxious 20-minute ride, followed by an anguished wait at the hospital where I would mentally plan my route to the nearest toilet(s) like a stool-magnet satnav, before repeating the whole exercise again for the return journey.
It probably won’t blow your minds to know that having to go through such a process was/is extremely exhaustive. The potential turmoil of needing to find a toilet in less than 30 seconds (if you’re lucky) when in a car going 70mph on the motorway isn’t something that needs much analysis. In short: you’re going to shit in the vehicle – it’s just a matter of where.
Every gurgle, grumble, bubble of air and potential fart from the gut could bring forth an avalanche of humiliation and horror with it. Having to leave the house for anything - let alone for an appointment miles away - was filled with worry. It hadn’t even been a month since my UC diagnosis, and I was being pushed into trusting my ability to deal with a condition I had no experience with – I’d only just got used to how to pronounce it, for God’s sake - but both my body and moral fibre (pun unintended[**]) were already being seriously scrutinised.
From my perspective, it felt like nobody could believe that someone who was okay a fortnight ago had become so pathetically housebound. I couldn’t tell them how bad I was specifically, because I didn’t understand ‘tolerable’ symptoms from ‘terrible’ ones, and my general knowledge of the digestive system was terrible – I mean, I still thought there was a connecting ‘tube’ from the large intestine to the stomach.
With that in mind, it is understandable as to why the medical staff would cast me with suspicion. They’ve heard every excuse under the sun as to why people can’t/won’t make an appointment, and for them, hearing my tired, suspicious, nasally voice for the first time must’ve sounded like someone who needed to buck their ideas up and get here, because I still wasn’t ill enough for an ambulance.
Thankfully, a small beacon of salvation (and biological know-how) came from the arrival of Crohn’s and Colitis UK’s ‘Can’t Wait Card’ in the first full week of January, along with a bunch of extra guides and information on UC. However, the salvation didn’t last long. By the early hours of Monday morning, we were calling for a paramedic.
Just So We All Know:
The ‘Can’t Wait’ card was developed by IBD charity Crohn’s and Colitis UK to allow people with IBD to discreetly ask for access to a toilet when they urgently need it. The card is credit card sized, and is available in a variety of languages to help avoid any potential embarrassment when abroad.
The card of the moment (Image: They're There)
Having a ‘Can’t Wait’ card doesn’t guarantee unlimited access to toilets – and even if it does, it can take too long to gain permission – so it can be worth contacting some venues or locations in advance of any trips to ensure that they are aware of what the card provides.
A ‘Can’t Wait’ card isn’t a replacement for the Radar key, which is (literally) a key that allows you access to more than 9,000 locked public toilets in the UK, but it is a worthy (and discreet) adversary in the daily life of an IBD patient.
In life, it is often the most innocuous moments that cause the most amount of damage. The innocent, beige arts of sneezing, stretching, bending, or – hold your breath – sitting down can bring detached retinas, torn tendons and/or ligaments; even the odd twisted testicle when things are especially, ahem, dangly on the fateful day.
And so, my first paramedic call-out of the year also begun with an innocent act. My characterless crime? Reaching to grab a tissue next to my bed.
Following the procurement of said tissue, I reverted to my previous upright position[***] and felt a dull ache in the left-side of my chest. Within minutes, the ache had mutated into a sharp, acute pain, and not long after that (and to quote Maroon 5), it was getting harder and harder to breathe.
Every breath I took[4*] brought upon the feeling of someone steadily twisting a knife into the left-side of my chest, with the pain edging further down my left arm – a mixture of weight-loss and my pale, milky-white skin meant I could tally up the veins in my arm that tracked the increasing agony. No matter where I lay, how I sat, where I positioned cushions or pillows; nothing made the pain subside.
My breathing got worse; my heart pounded for oxygen. The metallic, serrated edges of the mysterious, silver blade housed in my chest felt dipped in acid, burning and scolding through sinew and capillary, muscle and bone. Teeth clenched and neck muscles strained and popped like tree roots rising from soil. Cries and gritted yells permeated the empty midnight air; sweat filmed my cooling skin. Coughing added another blood-curdling twist of the cracked, worn leather handle.
Two hours came and went like drying paint on a damp February morning. Pain continued to burrow itself deeper into tissue. Eventually, as energy levels began to fade and eyelids became leaden, an ambulance was called. Despite all the above, I really didn’t want to have to call 999 – I held out for as long as I could – but there appeared to be no end. By now, a regular pain would’ve (surely) shown some signs of relenting.
I was expecting the arrival of blue lights or a distant wailing siren as they navigated their way across the county, but in reality, the paramedic turned up without the slightest crunch of tyre on tarmac[5*].
Alan[6*] the first responder appeared just as the pain began to (conveniently) subside. For the umpteenth time in a week, I felt my credibility (and pain threshold) under deep, cynical scrutiny. Despite what had unfolded during the last two hours, I immediately feel a cocktail of guilt and shame flush my body. I’m asked by Alan to lift up my shirt[7*] so I can have an ECG (Electrocardiogram), and I’m stuck with ten blue discs across my chest, back and sides, which are then attached to a bundle of coloured cables that resemble those that used to connect a dot matrix printer in the mid-eighties. Right in that moment, I felt the closest I’d ever felt to re-enacting a scene from Short Circuit.
The small ECG machine is fed the information emanating from my torso, and begins to print out a ream of paper with my heart-rate on it. After a short while, Alan feels that my heart is ticking over just fine, and informs me that what I felt was likely to be a muscle strain in my chest. Christ. If that was just a strain…
Just So We All Know:
The symptoms of a heart attack can include:
1. Chest pain - a sensation of pressure, tightness or squeezing in the centre of your chest
2. Pain in other parts of the body - it can feel as if the pain is travelling from your chest to your arms (usually the left arm is affected, but it can affect both arms), jaw, neck, back and abdomen
3. Feeling lightheaded or dizzy
5. Shortness of breath
6. Feeling sick (nausea) or being sick (vomiting)
7. An overwhelming sense of anxiety (similar to having a panic attack)
8. Coughing or wheezing
Although the chest pain is often severe, some people may only experience minor pain, similar to indigestion. In some cases, there may not be any chest pain at all, especially in women, the elderly and people with diabetes.
Game of Pricks
I also decide to make a facetious mental note at this point that says, “Well, yeah, but the heart is a muscle in my chest, so, technically… y’know… it’s the same thing, or whatever,” like the well-informed medical professional I am. Alan runs through the usual rudimentary checks (slightly tachycardic[8*]; everything else is fine) before asking for a finger to check my blood sugar levels. Dutifully, I put out my index finger, to which Alan says, “Everyone puts out that finger out – why is that?”
I’m not sure mate, but I think you should have a better clue than me…[9*]
As Alan has seen my nipples, I deduce that we’re getting along just fine and ask him which finger he’d rather use for the test. Alan decides to use the ring finger, positions the plastic finger pricker[10*] in place, and clicks the needle into the tip of my finger. Instead of having a small blob of blood emerge to smear onto the tiny blood sugar testing receptacle, a steady cascade of blood begins to pour down my ring finger like a newly active volcano spewing molten lava into a valley.
“Maybe that’s why people use the index finger, mate,” I say, like a smart-arse. Alan grabs some cotton wool to catch the body temperature lava and laughs, while (probably) choosing to punch me repeatedly in the head in his mind.
Alan gives me a souvenir print of my heartbeat[11*], tells me to take paracetamol if the pain comes back in the next 12 hours, and to check-in with my GP in the morning to make sure that there are no other chest complications that need to be addressed.
With that, I’m left to peel the ECG pads off my progressively spindly frame, and I realise three things: 1) Those ECG pads make light work of any chest hairs you may have, 2) They come with a layer of gel between the pad and the skin, which can come as a bit of a messy surprise if you’re not expecting it, and 3) They make a pretty decent face on a bedside cabinet when they’ve finished sorting your life out.
I pretty much had to chisel them off when it came to removing them a week later… (Image: They're There)
I grabbed two hours’ sleep before making an emergency appointment with the GP (everything was fine) and finally grabbed a blood test for the IBD team while I was there. Upon returning home, I slept for as long as my bowels allowed me (which wasn’t long enough), removed another ECG pad that I’d previously missed, and counted down the hours (46) until I’d be back at the surgery to check to see if I had testicular cancer.
Two problems down, two to go…
* As I was always being called on the home phone, it meant a lot of additional walking/running up and down stairs that I really could’ve done without. It later transpired that the reason why the hospital kept calling the house phone was because they didn’t have my new mobile number – and by ‘new’, I mean, ‘mobile number that I’d owned for eleven years’. [Top]
** For once. [Top]
*** Steady now… [Top]
4* Yeah, I know… Sorry… [Top]
5* Because it was the early hours of Monday morning, and not a Hollywood film. [Top]
6* Not his real name. [Top]
7* But we’ve only just met…! *Blushes* [Top]
8* You’ll be hearing that I’ve got a heart rate of 100+ beats per minute (BPM) quite often… [Top]
9* I know you haven’t asked for it, but I think it may be due to: A) Social conditioning – you always see people do it on TV, etc, so you follow suit, B) Your thumb and ring fingers can feel really awkward to hold out steadily, your middle finger is a bit rude and the pinky would really hurt, right? C) You point with your index finger, so it feels natural to do so. [Top]
10* Not its real name. [Top]
11* In reality: A print-out of my ECG for my GP to check. [Top]
Relevant links to places that are far more important:
THE SONG SUPPOSITORY
To shake rears, apply liberally to ears.
Heralding another bumper crop of Sound Suppository entries this week are:
The ‘probably too on the nose’ combo of Sheer Heart Attack (Queen) and John Cafferty’s Hearts On Fire (from Rocky “I must break you” IV), Tor Miller’s piano-lead beauty (Midnight), Roll Deep’s “Feeling sharp pains in my left tit” banger The Avenue, Maroon 5 and The Police’s musical nudges (Harder To Breathe & Every Breath You Take respectively), as well as Guided By Voices’ Game of Pricks.
Get clicking below and dive into the full Stool mini-soundtrack experience!
Added This Week:
Hearts On Fire
Added This Week:
Sheer Heart Attack
Added This Week:
Added This Week:
Added This Week:
Harder To Breathe
Added This Week:
Every Breath You Take
Added This Week:
Guided By Voices
Game Of Pricks
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