It’s the first day of Crohn’s and Colitis Awareness Week – happy #PurpleFriday to you all, and I hope you’re doing well – or if you’re not, that you’re doing as well as you can be right now. I’m hoping to publish one post per day for the entirety of this week. We’ll see how it goes – but to kick-start the process, I thought I’d make it a long one, and share something I’ve never written about in full before: my diagnosis story.
I can remember the exact day it began. 31st July, 2007 – my nan’s birthday. We were having a family meal out, and I was that particular kind of excited about visiting a restaurant that only children can be. It was a Harvester, it wasn’t exactly the Ritz (no offence, Harvester, I actually love you), but nonetheless I was looking forward to it – not only to eating with my family but also doing it well. My parents always gave credit where it was due for good behaviour, and although I was a goody-two-shoes as a child and craved constant praise (which is still true, to be honest) I was flighty and had a wildly variable attention span (which, er, I still have. Nothing ever changes, it seems).
I can remember what I ordered, but not in any great detail. A burger and chips, but probably lacking any toppings, because it wasn’t until I was about 12 that I would even countenance the concept of ketchup on a burger. I know. I was one of those. Even so, I was wholeheartedly enjoying it – tearing into it as much as my tiny 8-year-old mouth and good manners would allow.
And then I needed the toilet. I excused myself politely and went. I thought that was that. Then on the way back it happened again. And again. And again. And so it was that we hustled home to get me calmed down and cleaned up. I don’t remember anything else of that day except that I cried, apologised over and over for ruining the day, and between those I lamented the loss of my burger, which I wasn’t able to finish. But nobody thought, at that point, that it was anything more than a bout of gastroenteritis.
Except it wouldn’t go away. And I was fine, except that I’d somehow lost control of my bowels. It was wrecking my self-image. I remember going to the GP, who shrugged and told my parents I should be eating more fibre and red meat, but my mum wasn’t about to rest – she knew there was something deeper going on. I can remember her on the phone to the hospital, arranging a time for me to be admitted and observed. “No, we can’t come in on the 14th,” I remember her saying firmly. “I’m not putting her in the hospital on her birthday.” So, I got a brief reprieve for my 9th birthday – although not from the symptoms. Looking back, it makes me sad that I was so terrified of hospitals that I would rather have lived with the constant diarrhoea and exhaustion than be admitted for treatment. The weight was sloughing off of me, and as I’ve always been petite, it was starting to look alarming.
The week after my birthday I was admitted to my local hospital. It wasn’t bad, in hindsight, but at the time all I could feel was dread. I had my own private room – probably because they were worried I had some sort of infection, which they’d soon learn was not the case, but I was grateful to have my own toilet at least. The food was abysmal, of course, as hospital food has a reputation of being, and not doing anything to help my steadily shrinking appetite. I stayed there, for a few days, providing blood samples and stool samples on request. “I need to poo,” I told my dad, once, while he was sat with me and we were watching outrageously expensive hospital TV. “Why don’t you go? Toilet’s right there,” he pointed out. I shook my head. “Because,” I began, “when the nurse comes she’ll ask me for another poo sample, and I don’t want to have just gotten rid of it.”
This was the only conversation I can remember during my stay. Everything else – and most everything from this point onward – is blurry, and straining my mental muscles to look back at it is like trying to see through static, almost headache-inducing. Some details are clear, but everything else skips like missing footage on a video, like it didn’t happen at all, like a process that took two months happened in a matter of days. I’m not sure if my brain decided it would be healthier to dump those memories altogether, or if they were lost after I avoided thinking about it for so long. Either way, it’s gone. I went home with a referral for a colonoscopy. I don’t know how much my parents knew at this point, but I knew they were getting increasingly upset, and I hated to see them like that. I hated knowing I’d made my dad miss work, or that I’d made my mum cry, however much it wasn’t really me that was doing it – it was still my fault.
I managed to survive another month – and survive really is the only word I can think to use – before being admitted to Great Ormond Street Hospital for my first colonoscopy and gastroscopy. The hospital does amazing work for children suffering from the worst of conditions, but I still can’t help but shudder every time I hear the name. Our experience wasn’t a positive one, although again, I can only remember snapshots:
- Brusque doctors, nurses who were lovely but couldn’t be everywhere at once, a sense of being left adrift.
- “Please don’t leave me,” I begged my mum, “I’m scared, I can’t do it, please don’t leave me.” As heartbreaking as the scene was for both of us, every parent has to leave their child at hospital overnight at some point, and my mum knew – with wisdom I had yet to acquire – that it was best if I got used to it early on.
- Sleeplessness, and gut-wrenching sobbing, the kind that forces its way out of you in full-on wailing. That night I cried harder than I ever have before or since. It’s difficult to remember, more painful than I thought it would be. There was only crying, and the TV suspended from the ceiling at such a height that I could change the channel, and in-between, dreadful silence and the distant sound of a baby crying. Once during the night I slipped out of my room and into the corridor, to see if there were any nurses around, anyone, who could maybe help me with either the crushing dread I was feeling or, failing that, a grown-up tall enough to switch off my TV so I could sleep. There was no-one around, the corridor was dark, and the sound of a baby crying made me feel oddly sick with guilt. I returned to my room
- “There’s been some shuffling of the schedule, so you’re one of the first on the list this morning,” said the nurse who came to make sure I was awake. Panic
squeezed my heart with bony fingers. But my parents weren’t there yet. here
were they? I didn’t want to be taken away without my mum and dad there, but I was just a kid, there wasn’t anything I could do to stop them if they came for me. (They arrived just in time, and I had never been so relieved.)
- “Look,” my mum chirped as I was waiting to be wheeled into the endoscopy suite. “I bet that boy’s just had his done. Doesn’t look bad, does it?” Except it did. He was heavily sedated and looked as though he had no idea where he was. From the outside, it looked harrowing. The sick feeling in my chest mounted another few notches.
The scopes themselves I remember nothing of, thankfully. I do know that they only took half an hour, since the first thing I did upon resurfacing from the sedation was to squint at the clock on the wall. 9.30am. Somehow that seemed important, and I sagged back into the hospital bed in relief as they started to wheel me back through the corridors.
At this point, something happened that mortified me but was hilarious to everyone else, and has remained a family in-joke to this day. So, as anyone who’s had a colonoscopy knows, it’s perfectly normal to be gassy after the procedure. All that carbon dioxide they inflate you with has to come out eventually. But I didn’t know this – I’d been unconscious for the last 35 minutes, and my brain wasn’t exactly firing on all cylinders. So when my colon spasmed uncomfortably, I caught the eye of one of the nurses walking by the side of my bed and told her that I needed the toilet. She was understandably bemused. I’d had my bowel flushed out (although not very well, but it was passable enough, I presume) and was supposed to be empty – was I sure I didn’t just need to pass wind? No. I was adamant that this feeling was that of a full, post-dinner poop, just waiting to be unleashed. I was insistent. I needed to go. I was handed a bedpan. And I promptly lost it.
(See, I don’t like bedpans. I think they’re horribly undignified and not even fit for purpose. Why ask patients to defecate into a vessel that’s clearly not large enough? All it does is cause them anxiety over the volume of their stool and run the risk of it overflowing, a fear that lurked in the back of my mind constantly during those dark hospital days. And what about toilet paper? It’s all a horribly unsanitary and embarrassing system. Down with bedpans. We deserve better.)
I took a deep breath, and my drug-addled brain decided it was time to get loud, because nobody was listening to me. “No!” I hissed. “I want a PROPER, FLUSHING TOILET!”
A pause, as everyone around the bed looked away and tried not to laugh, and then my parents turned on the charm and spoke soothing words at me until, exhausted by the effort and still feeling the sedation, I dropped back off to sleep.
I don’t remember much of my departure from the hospital. (Wow, this is shaping up to be a great account – all I’m doing is telling you that I don’t remember anything!) But thediagnosis was confirmed: inflammatory bowel disease. At the time, the doctors weren’t sure of the exact type – it was probably Crohn’s, but not definite, and they pushed for more testing to be done. “Will it affect the treatment plan?” my dad asked. He was told that, at this stage, it would not. “Then no,” he said, “I’m not putting her through any more if it won’t make any difference. Not right now.”
And so I went home with my diagnosis and my Pentasa, to come to terms with the fact that I had a disease that would never fully go away – a bitter pill for a 9-year-old to swallow. But secretly I was relieved. We now knew what was wrong. We could do something about it. I could start to get my life back.