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
Ch-Ch-Check it Out
Two days later, my new GP joined the illustrious ranks of ‘Medical professionals who know me intimately enough for me to consider asking for their hand in marriage out of obligation’ (current population: 2), and informed me that they didn’t believe the latest lump in my testicle to be cancerous, but - to be 100% sure - they’ll request an ultrasound scan.
My GP added that if the scan was scheduled within a fortnight, the hospital considers the diagnosis to be serious; if it’s past a fortnight, then they don’t believe it to be an immediate danger. My letter arrived within a few days, summoning me to the hospital in… 2 weeks and three days after my appointment…
…so that was kind of okay, right?
In time honoured tradition, my mind instantly began to wonder about the ultrasound. I wonder if they’ll let me have a print-out, like when there’s a baby scan?
[Cut to: An imaginary ultrasound room]
Doctor: “Congratulations, it’s a cyst!”
Me: “Oh, that’s wonderful news!”
Doctor: “Would you like to know the gender of the cyst?”
Me: “Well, as it’s in my testicles, I’m pretty sure I already know the gender!”
[Laughter ensues. Doctor prints out a picture of the cyst, which I then post on Facebook later that day to confuse people into thinking I’m fathering a child. HAHA!]
What the hell does all of this have to do with your Colitis?
Believe me, this is all going somewhere. I’m not just over-sharing for the sake of it, alright?
With my balls on the back-burner for a few weeks[*], it was time to meet the IBD nurse five days later. Lucille’s[**] first words upon meeting me were, “You look pale,” which doesn’t mean much at all – I’m pretty much Casper the Friendly Ghost in non-spectre form at the best of times – but she was right. The last few weeks had seen my condition regress further; I became increasingly upset and jealous of anyone I saw wandering past our house on a daily basis[***], and spent most evenings lying down in a darkened room, occasionally interrupted by the ‘little and often’ meals that were becoming increasingly arduous to eat.
I longed for one normal, non-descript day. Of travelling to work on a typically overcast day, remembering very little of the working hours, before staring listlessly out of the train window on the commute back home. Of an unspectacular lunch hour. Of blissful ignorance. Boring work days and aimless wandering presented themselves as liberation and freedom. Lucille also noted that I’d lost weight, which, again, showed how noticeable things had become, and wasn’t being used a form of flattery and charm.
Lucille measured my rating on the UCDAI list, swiftly prescribed me with prednisolone, Calceos and mesalazine enemas, and suggested I get the “most expensive” multivitamins, as well as some special protein shakes…[4*]
...and if you’re currently wearing a blank expression on your face after reading that paragraph, then you are not alone, my friend…
Just So We All Know – First Meeting Special [5*]:
We’ve got a few to get through here, but stick with it - it’ll all (kinda) make sense in the end…
UCDAI, or the Ulcerative Colitis Disease Activity Index, is how some IBD specialists chart the severity of a patient’s Ulcerative Colitis.
The four key UCDAI areas that specialists use are:
1. Stool Frequency (how many times do you go to the toilet in a day)
2. Rectal bleeding (are you bleeding every time you go to the toilet? If so, how much bleeding is there, and what does the blood look like?[6*])
3. Mucosal appearance (signs of mucus in the stool can be an indicator of infection)
4. Physician rating of disease activity (the IBD specialists’ opinion)
Each ‘area’ is marked out of a possible score of 3. The higher the score, the worse the condition.
Once the specialist has totalled the patients’ score out of 12, the UCDAI places the patient on a scale. These are:
0-2: Patient is currently clear of any flare-ups (‘remission’)
3-9: Patient is showing a level of inflammation, and may require additional treatment
10-12: Patient’s UC inflammation is severe, and may need to be hospitalised.
Patients are normally rated on the UCDAI scale whenever they meet up with their IBD specialist. This allows the specialist to see how the patient is coping with their UC, and provide appropriate treatment when/if required.
Prednisolone is an anti-inflammatory steroid that is used in the treatment of Ulcerative Colitis flare-ups. As well as calming inflammation, prednisolone also “dampens down” the immune system, which, in some patients, can “switch off” the cause of their flare-up.
Due to prednisolone’s effects on the immune system, it can also make you vulnerable to infections and infectious illnesses, such as chicken pox and shingles. Any planned vaccinations where the vaccine is ‘live’ may have to be cancelled, too.[7*]
It is worth noting that prednisolone is a corticosteroid, which is completely different to the anabolic steroids attributed to athletes and body builders, and is prescribed in tablet or liquid form. It is possible to have prednisolone as an injection, but this is only usually given in hospitals.
There can be many side effects with prednisolone. The most common ones are: weight gain, indigestion, insomnia and sweating. Patients that take higher doses of prednisolone should have their doses gradually reduced when ending their treatment, as sudden withdrawal can cause serious side effects.
Once you start using steroids, you have to keep this card to hand for a year (Image: They're There)
Calceos are calcium and vitamin D tablets. In my instance, Calceos were given to me to ensure that my body was absorbing enough calcium carbonate and vitamin D3 to look after my bones while I took prednisolone. One of the long-term side-effects of prednisolone can be osteoporosis (a condition where your bones weaken and can become extremely fragile), so it was very important to maintain a decent level of both throughout the process.
Calceos can also help the body absorb phosphorus, which is also required to keep your bones strong.
Mesalazine Liquid Enemas are used to treat the lower parts of the colon and rectum that can be difficult to reach with oral mesalazine, such as Pentasa. (There’s more about enemas in the next article.) The job of mesalazine is to calm and reduce inflammation in the colon and rectum, and comes in both oral and rectal form.
A Pizza The Action
Having to take steroids concerned me. The image I had of the drug consisted of stunted growth, extreme anger issues, and shrivelled penises. The people I’d known who’d had a ‘proper’ steroid all seemed to live with a side effect, and the people I’d seen on TV all seemed to have messed their lives (and possibly their penises) up.
Despite the Freudian misgivings, my biggest concern was mental health. Having danced with depression and anxiety during the years, the idea of birthing a giant, mind-shattering brain bastard to combat my fiery innards wasn’t something that agreed with me. It would be like swapping the Daily Mail for the Express: either way, you’re going to end up as an even bigger arsehole.
Lucille explained the corticosteroid vs. anabolic steroid scenario, thus informing me that while my penis wouldn’t shrivel up (hooray!), I’ll have to keep an eye on any major changes in mood. There was no sure-fire guarantee that I would have any major reaction to the prednisolone, but the likelihood was nowhere near as certain as I’d originally feared.
The rest of the drugs seemed relatively fine: the Calceos immediately made me think of George Ezra’s Cassy-O', and I’d been pre-warned about potential enema usage by the nurse on the Endoscopy ward, so that wasn’t a big surprise - if I had to stick some liquid up my bum every night for a few weeks to get back to normality, I’d happily take it.[8*]
And then, a remarkable thing happened.
Lucille then informed me that, while on steroids, my diet was to consist of “pizza and Ben & Jerrys”.
What just happened? What glorious porthole did I just discover that brought me into a world where I was supposed to eat as many tubs of ice cream, pizzas (and cakes) that I could possibly ingest? Had I fallen into a parallel universe where the minds of six-year olds are dietary gospel?! What on earth was going on?!
Obviously, there were still limitations: curries, high-fibre foods and things that are “tough to eat” were still out of the question, but foods like tuna with mayonnaise were – sweet, sweet merciful Christ in yummy Heaven – back on the menu.
Inside Lucille’s small, non-descript, windowless office, while sat on wonky, worn, plastic chairs, I threw my hands up in the air and celebrated like I’d watched Super Saturday at the 2012 Olympics all over again – only this time, (Sir) Mo, (Dame) Jess and Greg (MBE) were successfully running and jumping to win me access to Domino’s, McDonalds... and John West (with Hellmann’s mayonnaise, of course).
But like all good battles, there was to be a caveat to the moment of joy: I was to avoid eating fresh tomatoes and onion at all costs. Their tough skins, pithy innards and citric, powerful juices can be like kryptonite to someone with UC, and as someone who loves a homemade spag bol and indulges in a dopiaza on curry night, this was to be a difficult sacrifice.[9*]
I nodded, and accepted my culinary cut-down.
Lucille then asked me about what foods I’d been eating during my current flare-up. I described the loathsome White Rice Therapy, like the one in the leaflet that I’d been given by this very hospital, to which she responded:
“Why are you eating that?”
In hindsight, I may have been the first person Lucille had encountered who was sticking to what the hellish rice-obsessed leaflet had enclosed within. I can see why this may have happened: Upon my diagnosis in December, no IBD nurses could be found to talk me through UC, and there were no leaflets to give to me, because the leaflets they’d been using were being replaced with new ones. The first meeting with my specialist GP the following week had ended with these brand new ‘Hooray for Congee’ leaflets being sent out, which turned out to be my only piece of advice available when my flare-up started soon afterward.
This would also make sense as to why the phone call from the hospital about what I could eat a few weeks ago seemed so out of sync with just about everything I’d read in this bloody leaflet. (PLOT TWIST: It turns out Lucille was the person I’d talked to on the phone.)
Despite repeated gripes, I’d been trying to do what I was told by various GPs and specialists. The only piece of information I had about UC flare-ups told me that I was to eat congee, so of course I followed it. I knew no better - I mean, why would I? I had no reason to believe that this rice diet wasn’t going to work, and I sure as balls wasn’t going to listen to a random “health and wellbeing” page on an errant Google search. Lucille tells me to stop with that diet immediately, and to download the Low Fibre Diet list online.[10*] I take down the web address and immediately make a vow to never eat congee again…
…I then make a second vow to download all of the fast food menus I can possibly find, so that I’m ready to take advantage of all the food as soon as I’m ‘roided up…
Just So We All Know – ‘Please Don’t Sue Me’ Leaflet Special:
The author of the leaflet has been removed, as they're not involved with the investigations below. (Image: They're There)
This is the White Rice Therapy leaflet in question. In the top left-hand corner of the leaflet, it states the name of the company who helped fund (but not write) it: Actavis – or to be precise, Actavis UK Ltd.
Since using this leaflet, Actavis UK have been accused on two separate counts of deliberately overcharging the NHS for a lifesaving drug. The first allegation claims that Actavis UK inflated the price of 10mg hydrocortisone tablets by more than 12,000% between 2008-2015, leaving the NHS with a bill that rose from £522,000 to £70 MILLION.
The same company is also accused of increasing the price of 20mg hydrocortisone tablets by nearly 9,500% by March 2016. This price hike saw NHS spending increase from £1.07 to £102.74 per pack.
The second allegation by the Competition and Markets Authority (CMA) claims that Actavis UK and a second pharmaceutical company – Concordia – agreed a deal that saw both companies drive up the cost of 10mg hydrocortisone tablets during a three-year period, which saw NHS spending increase from £49 to £88 per pack.
Hydrocortisone tablets are most commonly needed for Addison’s disease: a rare, life-threatening disorder of the adrenal glands that prevents the production of natural steroid hormones. In the past year alone, the NHS has supposedly distributed around 943,000 hydrocortisone packs.
At the time of writing, there has been no final verdict into either investigation, and no company has been formally charged of any wrong-doing. Full details of the current investigations can be found here (Dec 2016) and here (March 2017).
I had planned to write a full section about my personal opinions of Actavis UK and their leaflet in this piece, but as there is an ongoing investigation, I’ll wait until everything is finished, just to be safe…
Taking The Pee, Poo… and Blood
Walking out of Lucille’s office, a mixed feeling of relief, delight (and a hint of betrayal) bubbled beneath the surface. I wasn’t finished with hospital business yet, so I went to pick up a stool sample kit[11*] on my way to having more blood tests:
Phlebotomist: “How many vials are we taking from you today?” *Looks at blood test form* “Ooh, seven…”
Len Goodman: “SEVEEEEEEEEEEENNNN!”
Phlebotomist: “There was an elderly lady in here earlier on who had eleven…”
Me: “Christ... Was there anything left of her?!”
The phlebotomist and I spent a fair bit of time discussing what types of fast food I should eat first (McDonalds, followed by KFC – not on the same day, though), and a litany of other fast food-related topics that heavily hinted to us both that it was nearly lunchtime, and that we should probably find something to eat.
Upon returning home, I immediately ate a bourbon biscuit in celebration of my diet liberation, for missing Christmas dinner, and in defiance of this stupid, shit-obsessed disease. The drugs (of which, there were quite a few) would start in the morning. Things appeared to be getting back on track again: we’d began to fine-tune some of the ‘fine margins’ that could be the difference of making it to the bathroom in time, so keeping certain doors open, the toilet seat up, the landing light on in the evenings (but not when sleeping) and swapping button-fly trousers for pretty much anything else were implemented like an F1 team looking to shave milliseconds off a pitstop.[12*]
Later that evening, the news of Eagles singer/guitarist Glenn Frey’s passing began to break. My gut instinct (no pun intended, for once) told me that I had to find out the cause: Glenn had died due to “…complications from rheumatoid arthritis, acute ulcerative colitis and pneumonia,” according to a statement issued by Eagles.
I decide to tell no-one.
It was probably for the best, as within two weeks, I would be admitted to hospital.
* Not literally… [Top]
** Not her real name [Top]
*** There were no bad feelings toward anyone I saw. I just yearned for a basic semblance of normality. [Top]
4* The “most expensive, top quality” multivitamins, with as many vitamins and minerals in it as possible, was the general gist. We were told not to scrimp on cheap versions – I’ll need it all. The protein shakes weren’t your standard gym bunny juice, either; they were to be bought from the chemist. The reason? Protein helps to repair your body – and it’ll help keep my weight on/put back weight on, too. [Top]
5* Definitely not to be confused with First Dates. [Top]
6* That may look dumb, but what your blood looks like (and whether it is mixed in or separate from your stool) can help determine where the bleeding is coming from, and what action is required. [Top]
7* Always check with your GP if you are taking Prednisolone and need any vaccinations. [Top]
8* Feel free to add your own joke here, if you wish… [Top]
9* I may be over-playing it a bit much… but it did genuinely bum me out. [Top]
10* The website in question was overly complicated and difficult for a layman with minimal IBD knowledge to figure out, but after a few repeated looks (and choice words muttered under my breath), I downloaded the list and unearthed a plethora of foods I could finally eat again. [Top]
11* One of these:
It’s a small pot with a tiny shovel/paddle added to the lid, so you’re always prepared for whatever shit metaphor is flung your way... (Image: They're There) [Top]
12* Shitstop. [Top]
Relevant links to places that are far more important:
THE SONG SUPPOSITORY
To shake rears, apply liberally to ears.
Careering into your Sound Suppository earlobes this week are:
The Glenn Frey-led Lyin' Eyes by Eagles, the 'Oh, this is the one from the Formula 1 TV programme' tune by Fleetwood Mac (The Chain), an obligatory shout-out to George Ezra (Cassy-O') and Little Richard (Lucille), and a classic ditty by the one-and-only Iggy Pop (I'm Bored).
Get clicking on the monochrome pictures below to dive into the full Stool mini-soundtrack experience!
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