My journey with Colitis all started in July 2016 when I began to notice some abnormal bleeding after going to loo. After a week or so I started to get serious stomach pains but I was so frightened by the fact that I was bleeding every time I went to the toilet I tried to ignore it and thought it would go away.
But after about a month I went to a GP, told her about the symptoms and her first response (without doing any tests I might add) was ‘’I think you have bowel cancer’’. There was no mention of IBD, UC or any other problem for that matter. I saw a gastroenterologist and underwent a colonoscopy. Thankfully I didn’t have bowel cancer, but the tests came back inconclusive, so without much of a plan I just carried on as normal and pretty much tried to forget about it all (stupid mistake).
I went back to uni to start my second year – buzzing to get back to the life that I loved! What I didn’t count on is what followed. Starting in September I had moved into a new flat, was partying and meeting new people just like any average 20 year old. That was until November 2016 two months into what is supposed to be the best time of your life, and I was bed bound. Without having any clue I was in a flare up I didn’t know what was going on and was waiting to see another specialist. I went from weighing 8 stone to almost 5 in two weeks, had severe anaemia that meant I couldn’t even stand in my own shower and was just living in the bathroom.
I finally saw another specialist in December 2016 and underwent lots of tests that finally led to my diagnosis of Ulcerative Colitis in January 2017. At the time this didn’t really mean anything to me. I’d never heard of UC, Crohn’s or IBD and I didn’t know what to do. So my coping mechanism was to ignore it; I didn’t realise how serious the diagnosis was and wanted to carry on as normal. I was prescribed a course of strong steroids in the attempt to rapidly get the UC under control, and get me to the state where I could stand up. However, after being on the steroids for two months not much had improved and my GI had to admit me to hospital. This is the moment I realised the severity of the disease when the first words that came out of my doctors mouth echoed, ‘’life changing surgery’’ and ‘’colon removal’’ as he greeted me at the door. He was talking to surgeon and discussing the possibility for me to have emergency surgery. Thankfully they pumped me with a cocktail of very strong IV medication to try to get my colon to chill out! I left hospital colon intact, rattling from all the meds I’d been given and a plan of IV drug therapy for the rest of my life; all with the hope that I’ll end up in complete remission.
In spite of this, UC is a waiting game to hope the medication is strong enough to keep you under control. Three months out of hospital and things started to get messy again as I came off my safety blanket of steroids. My UC had relapsed. I was back to bleeding, rushing to the loo in the hope I didn’t ruin my favourite jeans and waking up in the middle of the night drenched in a cold sweat. To top it all off I violently throwing up due to one of the drugs they’d given me. So it was back onto steroids and given an early hit of my IV therapy in the hope of getting it back under control… Again. It felt like a million steps back.
June 2017 and still not in remission. It has almost been a year that I first went to that GP and I’m still discovering so much about myself and how my life has changed with a chronic illness. Colitis is all about what drugs work and what don’t, how to handle the diagnosis and what it all means to me and my family.
Regardless of how morbid that all sounds I am now part of a community of the strongest people in the world. The illness takes strength: To fight the flares, to fight the day-to-day changes of medication and doctors appointment, to fight your whole life. It has helped me to grow as a person and accept that this disease doesn’t define me or control me but it makes me a stronger version of myself.