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 a case of persistent and unrelenting gastro. I was in my second year of university and had just started dating my first serious boyfriend, so my health was certainly not a priority and I tried my best to ignore my worsening symptoms. With such a stigma associated with anything related to bathroom issues, combined with being an insecure nineteen year old, I didn’t tell anyone what I was experiencing and covered my dramatic weight loss with a story about how I was simply shredding for my summer body.
It wasn’t until a year later when my bathroom visits increased to up to fifty times a day and I had blood gushing from my rear end that I finally visited a doctor. Assuming it was just a tummy bug, my doctor prescribed me an antibiotic. Three courses of antibiotics later, and with diarrhoea still just as bad, if not worse than before, I was eventually booked in for a colonoscopy.
And just like that, I went from a nineteen-year-old uni student with the world at her feet to a walking pharmacy fighting a battle with her own body.
I woke up from my very first colonoscopy and was diagnosed with Ulcerative Colitis in April 2012. I remember sitting in my new gastroenterologist’s office being bombarded with brochures and pamphlets outlining everything from medication side effects to diet restrictions and how I would struggle to fall pregnant. As you can imagine, as a teenager who up until this moment hadn’t even heard of Ulcerative Colitis, I was completely overwhelmed and overcome with an anxiety I can’t even begin to put into words.
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 condition rapidly declined again and I began a two-year long colitis flare that spiralled my health to the point of battling for my life.
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 two 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 say 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 poo running down my legs because I hadn’t made it to the toilet in time and beg to the Universe that I’d just fall asleep and never wake up. Life had reached a point of simply becoming too hard to continue living. What I learned was that if you just pivot your mind-set 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 favour.
In September 2016 I had my first near death hospital admission where I was so malnourished that my body had started eating away at its 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 its own haemoglobin 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 choice.
Despite being completely against the idea of surgery, in December of 2016 I was forced to either choose between either an ostomy bag or my life….obviously I chose the latter.
In short, my ostomy bag saved my life. I quickly grew to love my bag, in a way I didn’t think possible. It freed me from the prison Ulcerative Colitis had trapped me in and let me live my life anxiety free. My life stopped revolving around blood tests, hospitals and where the closest bathroom was and I became so grateful for the little things in life like being outdoors, waking up for sunrises and indulging in a cup of coffee. I totally fell in love with life again and learned to appreciate the little red and gooey looking critter sitting on my tummy like a blossoming rose bud.
I always thought losing a part of me would make me feel as if I lost who I was as a whole, but I’m actually more myself now than I ever was with my large intestine. I’ve learned to not 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.
Do I wish I could start life again and live without Ulcerative Colitis? Never. What I’ve been through has made me who I am today and I’m utterly grateful for the weird and wonderful ways IBD has shaped my life.