I started experiencing my first symptoms about a year out of school. I’ve always been a perfectionist and an over-achiever, and I suffer from an extreme fear of missing out, so I was really frustrated when I started experiencing what I thought was just persistent and unrelenting gastro. I was in my second year of University and had just started dating my first serious boyfriend. I was insecure and shy and didn’t want to draw attention to the fact I had bathroom issues, let alone used the bathroom for anything other than a wee in the first place (because I’m a girl and god-forbid we poo) so I didn’t tell anyone what I was experiencing and covered my dramatic weight loss with a lie that I was shredding for summer.
It wasn’t until I went on an annual family skiing trip to New Zealand that my parents witnessed the extent of my diarrhoea and my mum urged me to see the doctor. Assuming it was just a tummy bug my doctor prescribed me an antibiotic. Well, 3 courses of antibiotics later and the diarrhoea was still just as bad, if not worse than when I first started them. I was too self-conscious to go back to say they hadn’t worked for a 4th time so I ignored my symptoms for a further few months. It was only when I started seeing masses of blood in every bowel motion that I went back to tell my doctor.
……And just like that, I went from a carefree 19 year old with the world at her feet to a walking pharmacy forever fighting her own body.
I woke up from my very first colonoscopy and was diagnosed with Ulcerative Colitis in April 2012. I remember feeling completely overwhelmed, isolated and helpless. I’d never even heard of Ulcerative Colitis before and here I was being told how I’d never live a normal life again.
Massive doses of prednisone and chemo drugs managed to mask my symptoms for a good few years and I was able to return to some sort of normality until November 2014 when my health rapidly declined again and I began a 2 year long colitis flare.
You can run away from a bad situation but you can’t run away from a bad body, you have to stay and fight it. So that’s what I did. I stopped studying and dedicated 2 years of my life to healing myself. I tried everything from steroids and biologics to faecal transplantation, medical marijuana and cabbage juice, but every day I woke up I was sicker than the day before.
I’d love to stay I remained optimistic despite everything, but the truth is I didn’t at all. I had bad days. Really bad days. Days when I’d just sit on the bathroom floor with blood and stool running down my legs because I hadn’t made it to the toilet in time and cry hysterically at the life I’d be dealt. What I learned was that if you just change your mindset everything bad doesn’t seem so terrible. I found comfort in thinking that either way these diseases are rationed out by the Universe and someone out there was bound to get it, so in a sense I’m saving someone else from having it – almost like I’m doing a stranger a favor.
In September 2016 I had my first near death hospital admission where I was so malnourished that my body had started eating away at it’s own muscle and tissues for energy. I had my next stroke of death two months later when unbeknown to me my body had stopped producing it’s own hemoglobin and I was rushed to hospital for blood transfusions. At this stage I had exhausted all my options in both Western and alternative treatments and surgery became my only option. However, I’m incredibly stubborn and was completely opposed to having an ostomy bag. I remember saying I’d rather die than have surgery. But in December of 2016 I was actually faced with that decision….obviously I chose the latter. One year later I underwent my second surgery to create a j-pouch: an internal pouch with my small intestines. Now all I have to show for what I’ve been through are 10 very little scars on my tummy.
I always thought losing a part of me would make me lose who I am as a whole, but I’m actually more myself now than I ever was with my large intestine. I’ve learned to stress less about the little things, love myself as I am right now and always search for the positives, because almost every situation has them. Having IBD has shaped my life in weird and wonderful ways and even if I had the chance I’d never change what I’ve been through because it’s made me who I am today.