My journey with Ulcerative Colitis started in June/July 2016. My first symptoms were bloating and a general feeling that something wasn’t right. That was quickly followed by blood in my stool. I tried to ignore it and thought it would go away.
A month of trying to hid it, I went to a GP. I told her about my symptoms and her first response (without doing any tests I might add) was ‘’I think you have bowel cancer’’. A few weeks later, 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. I had moved into a new flat, was partying and meeting new people just like any average 20 year old. That 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 6 stone in two weeks, and was just living in the bathroom.
I finally saw another specialist in December and underwent lots of tests that finally led to my diagnosis of Ulcerative Colitis on 6th January 2017. At the time this didn’t really mean anything to me. I’d never heard of UC. 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 prednisolone steroids in the attempt to rapidly get the UC under control. However, after being on steroids for a few weeks and nothing improving, my GI had to admit me to hospital.
The first words out of my doctors mouth when I walked into hospital was, ‘’your symptoms are so severe, I might have to get a surgeon involved. You might need surgery in 3 days” . He was talking to surgeon and discussing the possibility for me to have emergency surgery. They pumped me with a cocktail of very strong 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 remission.
UC is a waiting game. You hope the medication is strong enough to keep you under control. Three months out of hospital and things started to get messy again. I was bringing the steroids down slowly and 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 putting the steroid up 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.
But I have been lucky enough to find 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 appointments. To fight your whole life.
8 thoughts on “How it all began.”
Thank for sharing your story,sounds a lot like how my uc started way back in1971 . I went through pretty much the same thing for 8 years. In 1980 I had my colon removed and a koch pouch made. Have Ben very happy with it ever since.
Hi Mike, thank you so much for taking the time to read my little story! I’m so glad that all has worked out for you. It’s good to know that there is light at the end of the tunnel!
Just wanted to say it takes such bravery to write something like this and to be so honest. I also suffer with UC, t felt like my whole world had been turned upside down when I was diagnosed at 18, I am now 23 and in remission. All I can say to you is keep fighting and carry on being so strong.
Hey Sara! Aww thank you so much for your kind words, it means a lot to me that you took the time to read my story! It is so sweet of you to say such lovely things! We all go through so much & wish you all the best! I’ll be posting every few days, so if you’re interested keep an eye for new stuff!
I strongly believe in the power of the gut as well Billie. Good luck with everything! Lots of love, Molly
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You are an inspiration to many – incredible strength and no doubt you will pull through this.
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I just want to say thank you for sharing your story. It is really comforting to know I’m not alone and that I’m not limited to my illness. I am currently 15 and was diagnosed with UC in 2017. I’ve always felt like nobody really understands what it’s like and feel quite isolated and left out with not being able to go on school camps and trips.
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Oh im so pleased you find the blog helpful±! You’re defo not alone – there are so many people out there to support you that are going through the same thing