I have been sat in front of my Macbook for hours, wondering what to write and how to write this post, knowing that after years of wanting to talk about my Crohn’s to a wider audience, I still don’t have the words to describe everything. Now, I’ve come to the conclusion that if I don’t write this post now I’ll probably end up never writing it at all, and that would be an even bigger shame. Alas, here I go – I have an incurable, lifelong disease. And I can’t eat chocolate.

WHAT IS CROHN’S DISEASE?

To put it simply – Crohn’s Disease makes you sh*t. A lot. Classified as a form of IBD, your body is constantly attacking and trying to reject all the healthy cells in your body (from the digestive system to the eyes, mouth, etc) by mistake. No kidding. No one knows what causes it, but it makes your intestines inflame and tries to ruin your life. I try to stay away from Google as I’ll tend to come across a bunch of stories with titles such as “It’s not classified as terminal, but…” and people talking about how their lives are over and how they’ve developed bowel cancer and perforations and other horrible things because of Crohn’s. Honestly though, so long as you can cope with all the side effects (from hair loss to rashes, constant fatigue to malnutrition)  and the like, you’ll be fine. It’s frustrating and exhausting, but liveable.

MY STORY

It turns out that I’ve always had Crohn’s, but it was only diagnosed in 2014 after I went through an insane amount of testing with almost all the doctors putting it down to stress. I was on a crap ton (haha) of drugs for a while, averaging at about 16 tablets a day for a bit, eventually having to leave school because my attendance was way below even 10%. I wouldn’t be able to summon the energy to leave my bed most days, as despite the medication and diet plan I was on, my body wasn’t absorbing anything and I was coming out pretty malnourished.

MY FAMILY THOUGHT I WAS GOING TO DIE

After a while of being high on meds, I stopped falling into decline and started steadying out a bit, until another bout of tonsillitis hit and my GP told me to take Erythromycin. I had such a big reaction to the medication that before I knew it I was hospitalised again, growing more and more ill each day. I tend to overdramatise a lot of things, but my family’s concern isn’t one of them – my mother recently confessed that she thought I was going to die during the worst week.

The medication made me see things and stop feeling things, and for a while I was numb and walked about in a zombie-like state. I can’t really recall what happened during those days, but I remember wondering why I felt so disconnected from the world, dropping to a weight nearly two stone lighter than I already was.

RECOVERY

LOOKING BACK

The worst part about my journey with Crohn’s (ignoring, you know, having Crohn’s) was that I was constantly turned away from doctors who didn’t even believe me. It took months of debilitating illness until one doctor clocked one of my notes and finally brought me in for testing. If by writing this post even one person reads my words and goes “wow, that sure does sound a lot like my sister” or the like, then it’s been worth sharing such a deep part of myself on the internet.