The next part of the journey, begins here.
To be honest, one of the most annoying thing about Crohns Disease is the fact that every computer/phone wants to auto-correct it. The fact that technology doesn’t even identify it as a known word is in line with how little knowledge or information there is out there; not reassuring when you’re trying to work out what your body is telling you.
On 25th August 2015, I was admitted to the gaestronology department of the Hospital for a Colonoscopy, following an initial bowel cancer screening. I kept relatively quiet about all of this to my friends and family; partly because I didn’t want to provide false information and partly because I was terrified. I knew I had been ill since October 2014, but I put it down to stress of running my own business and general poor diet. Anything to do with your bowels or toilet terrors still seems to be such a taboo subject, and definitely not something I was a fan of talking about; despite how ‘trendy’ gut issues seem to have become. So I suffered in silence for 7 months, not knowing what was wrong and not knowing how I could make myself better.
In the end, Will and I made the important decision to shut our business, so that we could each invest more time into ourselves – something that had become so crucial with my deteriorating health. I was nearly completely absent from social media and increasingly more anti-social, swapping days out with the girls for days unable to move from my bed. I tried cutting out gluten, cutting out dairy, cutting out caffeine and alcohol – but still no improvement. I took medicines for IBS with little success and eventually my doctor said I needed to be checked out for bowel cancer; not words you want to be hearing at 23 – but progress. People were finally beginning to accept that there was something deeper than just having a ‘dodgy stomach’ and in a way, I was relieved.
The screening itself was traumatic; it’s bad enough sitting in a clinical room, plastered with ‘How To Make It Through Cancer’ and ‘Call Macmillan Nurses for Support’, metal implements, gloves and jelly staring you in the face, but to have two male doctors and a student nurse greet you and carry out a highly personal, trousers down, knees up, let’s pump you full of carbon dioxide examination trumps most experiences I’m sure people have had. The results? Cancer free – the most likely outcome given my age, so I was told. What this did mean, however, was that it was something else. Which meant being referred for a colonoscopy.
Now, unlike an ear problem or an eye infection, a bowel disease is hard to see. And unfortunately, the only way in, is a way that is normally your body’s way out. Getting over this fact, and the matching robe and shorts (with hole cut out the back) they give you when you go into the surgery ward is the first part. Having the physical examination is the hard bit; 53 minutes of having a long camera tube shoved through your insides, all whilst you lie there, drugged up as you like, watching it on a monitor, as they take biopsies throughout your various tubes and passages. Having small parts of your bowel cut out feels like someone pinging an elastic band on your insides by a tiny, irritating school kid.
And that brings me to today, October 21st 2015 – a whole year since this saga began.
I have now been officially diagnosed with Crohns Disease, and am on a cocktail of anti-inflammatory tablets and steroids to keep myself in check and to reduce the number of severe flare ups I encounter, until I am back in hospital with a specialist. My weight is constantly fluctuating, I feel fatigued most of the time and am constantly dehydrated or on the verge of a migraine due to the loss of blood and fluids. I’ve been able to reduce the number of times I go to the toilet from 20 daily, to 2 and most of the time I am able to be pretty lenient with what I eat and drink.
I am only at the start of an uphill battle, and although this condition does not affect huge amounts of people, once it’s hit home, you realise how alienating it can be to have a life-long illness that currently only offers the options of steroids or surgery for any form of long-term fix. I’ve only been able to classify myself as a sufferer of an Inflamatory Bowel Disease for two months, but I am already suffering the stigma of having an internal illness; how everyone thinks that because your face isn’t green or you’re not sneezing and spluttering, that you must be fine; that it really can’t be that bad. So on weeks like this week, where I can’t sleep at night because I am constantly on the toilet, unable to digest any food, throwing up bile, suffering from shakes, chills, cramps, fatigue and unable to move from the severe inflammation to my joints, I invite you to sympathise. Just because you cannot see something, doesn’t mean it isn’t there; and if there is one thing I have learnt very well throughout the course of my life and through others, a brave face hides a thousand sadnesses.