Falling ill
So, as I sit on my bed writing this I am realising that it has been over 8 years since my journey with Crohn’s began. I had only just turned 12 years old when I first fell ill and honestly, as sad as it sounds, I cannot remember what it feels like to be “normal”. I mean, no one really remembers the first ten years of their life that well. And more to the point, no one really takes notice of their health until it’s gone. Hindsight’s a beautiful thing.
I was that child who was skinny no matter what or how much I ate. I was that child who never got ill, had every 100% school attendance certificate and seemed immune to even the common cold. The envy of many. My invincibility however proved short lived in May 2011 when I contracted a virus at school. So many other people had already caught it, had their week off and returned to school unfazed. I was a little different. After the first week had gone by, my symptoms seemed to be getting worse rather than better, and soon I was off to the GP. They told us not to worry and that it would probably sort itself out. Phew. But as more days passed, I only declined further. I entirely lost my appetite, began vomiting frequently and experienced horrendous abdominal pain and diarrhoea. On returning to the GP a couple of weeks later, I was prescribed some over-the-counter anti-diarrhoeal medicine. But the problems only got worse. Within a month or so I was going to toilet between 15 and 20 times a day (absolutely no exaggeration), I was as a white as a sheet and was practically skin and bone. After several blood tests (at which time I was terrified at the prospect of a needle, ah to be a naïve child!), I got referred to a larger hospital in Essex. I remember how terrified I was, it was all becoming rather real. Not to mention the fact that I’d been off school for months and felt like I was stuck in limbo while all my friends carried on with their lives. I’d gone from being healthy, sporty and happy to bedbound in a matter of months. I couldn’t believe this was happening to me. No one ever thinks it will, until it does.
Referral
It was during my first referral appointment that I was questioned about my symptoms. Here we go again, I thought. The same questions I’ve been answering at the GP for the last few months. Except this time, there was a new one. “Do you have any mouth ulcers?” My parents and I looked at each other wondering how on earth that was important given the plethora of severe symptoms I was displaying. But interestingly enough, the answer was “yes”. And within an instant the doctor’s facial expression changed. She told us she was going to refer me immediately to a major hospital in London, but at this point she gave nothing away as to what she suspected was wrong with me.
I had my first appointment in London on 16th November 2011, at which point the doctors told me I would be admitted to hospital for some tests. I was completely petrified. I’d never even been to a big hospital like this and the only tests I’d ever had done were blood tests, and at the time those seemed traumatic enough. They told me they would put me to sleep and insert cameras inside me (a.k.a. a colonoscopy). “How is that even possible!?”, I asked my mum. I was a bundle of anxiety on December 12th when I got admitted. And despite the mini Christmas tree on the children’s ward, I did not feel festive in the slightest. It felt grossly unfair that while everyone else was enjoying the Christmas season, I was stuck in a hospital bed feeling like death. And the fun was only just beginning! For that night I had my first taste of what I maintain to be the most disgusting thing to ever grace a human tongue: Piccolax. The nurses basically had to force feed me this hot, fizzing, bile-tasting bowel prep throughout the night, meanwhile I was constantly running to the bathroom and throwing up into an endless supply of kidney bowels (sorry about that lovely image!). The next morning, in my silk pyjamas and pink fluffy dressing gown, my stuffed tiger Tigy in hand for support (I got him when I was 6, so please excuse the slightly uncreative name…), I was walked down to theatre with my mum. I was a complete wreck of tears the entire way down what seemed like an endless number of stairs leading to my eventual doom. Then they asked me to lay down and put the oxygen mask over my face and through my tears I just saw my mum crying with the distress of seeing her once healthy child in this sorry state.
Diagnosis
Okay, so waking up from your first anaesthetic is weird. I felt so detached, drowsy and like I wasn’t really there. But soon reality crept back in. The first thing I saw when I opened my eyes was my mum crying hysterically whilst consulting one of the doctors. Not a good sign. After I’d come to, they sat my mum, dad and I down and explained that I had Crohn’s Disease. I’m sorry, what? None of us had never heard of that, but anything with the word “disease” in the name automatically seems cause for concern. They explained that I had “severe oesophageal, gastric, small bowel, pancolonic and perianal inflammation”. Naturally that meant nothing to me. But not to worry, after the colonoscopy they had some delightful visual aids to help explain. (If you’ve ever seen the internal imaging of a Crohn’s patient you’ll know that it is NOT a pretty sight…) “So how do I get rid of it?”- that was my only thought, other than being entirely grossed out by the look of my own insides of course. Then they explained that I couldn’t, not exactly. They told us that this was a chronic condition, in other words that I’d have it for life. WHAT?! We were all just completely blind sighted by this. How did this happen? How did my life fall apart so quickly? Will I never feel normal again? Can I go back to school? How do I tell my friends? My brain was in overdrive.
My parents then asked what we were going to do about it and the doctors explained that I had two options: steroids or an exclusive liquid diet. Naturally, my parents, who knew nothing about the condition, were against the idea of pumping their child full of any medication at all, let alone Prednisolone a.k.a. “the death drug” (now we laugh about our naivety in this department, having since been on steroids so many times I’ve developed a resistance). They refused to put me on steroids and made the decision for me, I was not to eat for a minimum of 6 weeks and only drink Modulen supplement shakes to allow my bowel to heal. The doctors wanted to keep me in hospital to begin treatment then and there, but my mum didn’t want me to miss out on Christmas at home. And I wasn’t about to go without Christmas dinner, not a chance! So, much to the disgust of the hospital, we postponed starting treatment until January 1st, and that’s when my new life with Crohn’s really began.
Looking back
I am a firm believer that when you go through something traumatic, your brain does its best to forget. I don’t remember everything, but throughout this whole period I kept a journal. I started it for fun really, but I suppose deep down it was more of a coping mechanism and a way for me to process all the struggle and confusion.
“I must say it was probably (definitely) the worst experience of my life, but I just hope we have caught it early and the supplement diet works so I can feel normal again.”– 14th December 2011
“I think I’m starting to get used to the idea of having a disease for the rest of my life, as mummy said she would handle it and it wouldn’t ruin anything.”- 16th December 2011
Now 20 years old, reading this back both saddens and humbles me. I was so naïve, but somehow also so strong. Maybe it’s because I didn’t understand the implications of the diagnosis or what was ahead of me. I didn’t even know how to spell my disease (in my journal I attempted to spell it “chromes”), let alone what it meant for my life. I thought my parents could protect me from everything, so did they. Accepting you are going to have an illness that you can’t control for the rest of your life is hard, there’s no denying that. But staying positive, as hard as it can be when things are tough, is the only way forward. It may seem alien at first but living with a chronic illness will become your new “normal” and you’ll be stronger for the hard times and appreciate the good times so much more.
Me and My Crohn's 