About me
Hello! I've wanted to write about my condition for a while now, however, I've never known where to write it until now! My name is Paige Dease, I'm 17 years old and I've lived with Crohn's Disease for nearly 12 years. I love music, singing and playing guitar is my passion, and I love doing gigs around my amazing city of Manchester.
Crohns disease- the nitty gritty
My condition isn't visible, my condition isnt kind, my condition isn't for the faint hearted. Crohns disease is a condition that effects my digestive system. I get flare ups resulting in severe abdominal pain, sickness, internal bleeding, inflammation... the list goes on and on! My immune system attacks itself, leaving my body highly at risk to infections and bugs etc. There is no cure for Crohns and although medication is effective it doesn't always work for everyone, there's not many options for meds either. The last resort is surgery, a stoma bag is the route some people take/are forced to take. This is where a part of your bowel comes out of a hole in your belly and a bag collects waste from there instead of running to the toilet every 5 minutes.
My Crohns journey
When I was 5 I started getting symptoms. I had bruises and boils all up my legs, due to my body attacking itself. I had ulcers from my mouth all the way through my digestive tract and out the other end. I couldn't eat, drink or sleep because of the sheer amount of pain I was in. I spent most hours of the day on the toilet, if I wasn't on the toilet I was waiting for the next time I would be on there again. I had no friends, no one understood me, I was just "Paige Disease". My quality of life was next to nothing, without my mum it would have been at 0 but she kept me going and strong!
My crohns was diagnosed 2 years later, it was uncommon for my age, at that time, to have such a complex disease. My mum had a hard battle with the doctors before they took any notice of me. I have spent most of my childhood in hospital, undergoing many operations and treatments. When I was little, my doctor said I was the worst case he's ever seen, throughout adult and children. The doctors have been surprised I've survived, having being so dehydrated, malnourished and anemic. My mum has had to say goodbye to me a few times in my short life! Yet here I am still fighting.
At 16 I decided I'd had enough! I'd had every treatment, been through so much pain for so long and I didn't want it anymore. So I pleaded for a stoma bag. It was the hardest decision I've ever had to make, but it's been worth it! My stoma surgery was hard to get through at the time, it felt like all my 11 years of pain all bundled into that period of recovery. But I got through it and I've not been in pain for a year! I've had a bit of a blip, spent most of my summer holidays in hospital and now I'm being tube fed because I have a narrowing due to inflammation and my body can't process food. However, I know that I will get better.
The fun stuff!
The real reason why I'm writing this is because I want people to know that it's not all hospitals and pain. If you're reading this and you live with something that is classed as 'different' in society, I hope you read this part and listen to what I'm about to say! Just because your life is not like everyone else's, just because you're not like your friends, doesn't mean you can't do anything! I have the most wonderful life, yes, I may be in pain, yes, I may have a bag full of poop on my belly... But it sure as hell won't stop me doing everything I want to achieve in life! I go out and gig as much as I can, I want to be an event manager one day, I've successfully planned a few events already! I ended up in the Manchester Evening News with one charity gig too! My condition and everything I've been through with my condition shows me I can. It shows me that through out all the bad there's got to be some good! You've just got to find it for yourself. Only YOU can stop YOU from doing what YOU want to do. As for the people that try and get you down, call you names and exclude you... you are so much better than them, give yourself credit, you're strong and you tell yourself that even when you're not!
The future
I'm hoping to do more events in the near future, I want to be able to raise awareness for charities that have helped me and raise awareness for my own condition. I did a 10k walk for Crohns back in May 2017, I hope to be well enough to do that again next year. Fundraising is my main goal, however I'd love to be able to travel and eat wonderful food from around the world when I'm better and am not being tube fed! I have this for life, but it certainly doesn't have me. Thank you for reading my story❤
