It is a truth universally acknowledged that invisible illness can plague any healthy-looking, smart-talking millennial underneath our tough exteriors.
But one disease, suffered by at least 115,000 young Brits and millions more worldwide, remains hidden behind closed doors and undisclosed in the media, partly due to public squeamishness and something known as the ‘poo taboo’.
Now, Loïs Mills, just your regular sharp-dressing 25-year-old Account Manager at a design agency in London, is determined to debunk the derriere and has taken to the world wide web to talk about her illness: Crohn’s Disease.
Loïs was diagnosed with Crohn’s in October 2015 after a year of emptying her bowels anywhere up to 20 times a day, passing mucus and blood in her stool, an inability to keep down any solid foods, flu-like fever, severe cramps and constant fatigue.
Speaking exclusively to UNILAD the young professional explained she thought the symptoms were ‘down to life changes, stress or the amount of coffee I was consuming’.
When I started to pass blood through my stools, I realised that something was really wrong – all you need to do is Google ‘blood in poo’ to freak out!
— GUT INSTINCT (@gutinstinctblog) September 27, 2017
Crohn’s is notoriously hard to diagnose, and after initial shyness about going to the doctors followed by a cancer scare, she was put on heavy steroids, with a side-dose of insomnia, extreme two-stone weight loss and subsequent instant ‘ballooning’ and swelling of the face and body.
Despite the ongoing ordeal, Loïs now feels comfortable to lament, laugh and declare her Gut Instinct – namely, that having Crohn’s is literally crap that causes ‘your bones to ache, your muscles to throb and your stomach to feel like it’s being ripped apart’.
Instead of shying away, Loïs took to YouTube to ‘talk sh*t about sh*t’:
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Mills recalled her ‘lowest point’ in December of last year:
My friends and I had tickets to see Loyle Carner, which we had been looking forward to for months and I had been doing quite well with my health.
Halfway through the night, I realised that my body wasn’t responding well to the food and drink, and within the space of an hour I had thrown up five times.
People just thought I had had too much to drink, but by the time we got home, I knew something was wrong. I was stuck on the toilet for over an hour and lost countless amounts of blood.
Loïs described the ‘agony’, saying she feared for her life:
I lay awake the entire night, shivering, shaking, in agony and it got to a point where I couldn’t even leave my room and I was now losing blood through my back passage without even going to the toilet.
I’m a dramatic person, but I was scared that I was going to die, and so at 5am, I called 111. An ambulance was called out to me, and when they arrived, I was inconsolably crying from the pain.
Although the then 24-year-old praised the treatment she received that night, she couldn’t help but feel it was ‘a massive wake-up call that my life wasn’t the same care-free string of Friday nights it used to be!’
To treat her Crohn’s, Loïs explained that she’d been served a cocktail of medicine over the past few years, from Asacol to corticosteroids called Prednisolone, by way of Budesonide and the immunosuppressant, Azathioprine.
She continued, ‘let’s never forget the dreaded diagnostic colonoscopy’, adding:
Having to starve yourself for a day, take a ridiculously strong laxative drink and then have a camera shoved up your bum whilst they take biopsies from your gut is not your typical glam Wednesday!
No matter how long you’ve had Crohn’s, the frequent requests of ‘pants off, knees to your chest’ never gets any more comfortable.
Loïs told UNILAD:
I learnt very quickly that I couldn’t hide from my disease. One of the main day-to-day effects is fatigue – I could sleep all the hours under the sun and still be tired!
I can’t eye roll enough when people joke that I’m ‘just being lazy’, and that is my main agg with the reality of this illness – because people can’t physically see it, it’s hard for them to process, understand or remember that it’s there (and will be there forever).
Although it’s an invisible illness, and I’m bored of hearing that I ‘look fine’, the toll it was taking on my body was unavoidable.
Today is World IBD Day ? Here is an unseen picture of me in September 2015, the day after my colonoscopy exam. You would be fooled by the smile in thinking I was absolutely fine but if you really look into my eyes you might just work out that actually I'm so unwell. This is exactly the problem that people with IBD suffer with daily – the struggle of an invisible illness is not only a physical one but an emotional and mental battle too. To be constantly misunderstood or not offered the help we need because we 'seem fine' is the stigma I'm trying so hard to break, and this can only really be done through awareness. Conversations are key, so if you're a warrior like me then please keep talking. It's okay not to be okay ?
Crohn’s is messy. It’s debilitating, life-changing, chronic, incurable, it can be ‘isolating’ and it certainly doesn’t fit in with most 20-somethings’ idealised perceptions of existence. But it’s very real and it’s with you for life, if you’re diagnosed.
Loïs, like any other person suffering with Crohn’s, knows that:
Accepting you have an incurable chronic illness is a tough pill to swallow. Having to try and maintain a sense of normality in your life and continue as you were is very hard when your body is no longer as it was.
The simplest tasks like going to work can be a challenge – there are days when I wake up exhausted, throw up on the tube and then have to leave the office seven or eight times to ‘go to the toilet’.
But the brave woman copes ‘with humour and honesty’, adding, ‘it’s not gross, and it’s something that makes people fighting it daily incredibly strong and amazing.’
For Loïs, ‘It’s just a case of trying to find a new normal’ amid suffering ‘moon face’, extreme fluctuating weight, hair loss, living in a bedroom that looks more ‘like a pharmacy than a makeup cupboard’ and unrelenting new dietary requirements – not to mention the other countless damaging side effects to her mental and physical health.
All the while, she is determined not to let the Inflammatory Bowel Disease beat her, much like the thousands of other 16 to 30-year-old’s it predominantly attacks.
Crohn’s and Colitis UK offer a platform on which you can get information and support to help cope with your IBD, and Lois is determined to dispel the ‘poo taboo’ among young people through social media forums like InstaCrohns.
You can also get emotional support from Samaritans on their 24-hour free UK hotline on 116-123.
Diagnosis is the first step, so please don’t suffer in shyness or silence.