“So what is Crohn’s disease, babe?” – a question that I get asked regularly. As a naturally loud and vocal person, I am more than happy to share with any Tom, Dick or Harry exactly what Crohn’s Disease is and how it is has ruined my life (joking). The problem is, most people don’t actually want to know the answer.
Let me break it down for you; Crohn’s Disease is basically an incurable illness where your insides are inflamed. Any part of your gut can be affected and causes chronic problems for your digestive system and gut. From the great camera footage I saw when I was sedated up last year, my small intestines and areas of my colon are damaged – imagine a really bad, bleeding, sore, mouth ulcer. That’s kind of what my insides look like. The result is, my body can’t handle eating or drinking. One mouthful of pie and I’ll be on the toilet all night. Can you imagine how shit that is, to want to eat a nice, gluttonous meal, but knowing that if you do, you’re literally kissing goodbye to any form of health for the next 24hours?
So what are the symptoms? During a flare-up, I can be going to the toilet close to 20 times a day. And yeah, we’re taking Number 2 here, except completely liquid based. Mixed in with blood. Lots of blood. And probably parts of shredded intestine mixed with undigested food. It’s glamorous, really. I’ll lose so much fluid that I’ll probably develop a migraine and my body will start shaking uncontrollably through a state of shock. It will be impossible for me to warm up and I will be bent over in half in pain. I won’t be able to lie on my side, because aggravating my body in any direction immediately makes me need to go back to the toilet and I’ll lie awake most of the night in pain. My skin will get shit, my hair will fall out in clumps in the shower and my nails will be weak because I can no longer absorb any goddamn nutrients from food. The solution? Food supplement shakes and steroids. So I’ll be bloody starving and have a massive moon face.
It’s hard to explain all of the above to someone, especially when people’s reactions are often less than reassuring. It’s not a sexy thing to talk about and it’s not an easy topic for people to understand either. Whilst it affects nearly every aspect of my life now, I think it is hard for people to try and relate or empathise when it’s not a visible illness. If I wasn’t so graphically vocal, most people would miss that I’m suffering or be oblivious to what having Crohn’s entails – and to be honest, that is the hardest thing to get your head around. To know that unless you have it, no one really gets it.