So as I have written more and more of this blog, I suddenly felt that it was really important to explain to all of my readers why I have decided to write the thing in the first place! I am no writer and am in fact severely dyslexic so it would seem completely against my nature to invest my time into something that I in fact would actively avoid doing at most points in my life. I really try and write in a very honest way and I don’t use fancy language to try and sound smarter than I am and it is really important to me that this blog is relatable. Anyway, I am beginning to ramble, so why did I decide to undertake writing a blog about my journey and my story with Ulcerative Colitis?
Basically, this all stemmed from the fact that I couldn’t find one that fitted what I wanted to hear. Stubborn/hard-headed? Yes.
When I was first diagnosed (or they were talking about it as a possible diagnosis) I did all of the “official” research on the Crohns and Colitis UK website (absolutely brilliant research don’t get me wrong) but I then wanted to delve a little deeper and find people’s personal experiences of Ulcerative Colitis and what had happened to them and how their lives had been affected. In a world where EVERYTHING is documented, you can find youtube tutorials on everything, an insta page documenting the weird and wonderful and generally find out way too much information about any given topic, I was surprised that there was a seriously limited amount of blogging or “real life” information about IBD. What was even more shocking for me in this discovery was that it all seemed like the people that were blogging about it were the people that had needed to have the most invasive and end of the line treatments.
Depending on the statistics that you read, only 2/10 or 3/10 people with Ulcerative Colitis will end up having surgery to have a stoma. I am not going to talk about what a stoma is as if I am honest, I did bare minimum research into it myself (ever the optimist). So when like 9/10 of the blogs that I unearthed were about “life with a stoma” etc, I was seriously shocked. Why was nobody talking about life with Ulcerative Colitis if it didn’t involve major surgery?
This is where the idea of MeandMyColitis was born.
As I have previously hinted to, there is a certain amount of stigma around Inflammatory Bowel Disease. People don’t like to talk about poo and their bowel habits but according to the Crohns and Colitis UK website it is estimated that Ulcerative Colitis alone affects about one in every 420 people in the UK. That means that in the UK alone 158,000 people have Ulcerative Colitis. To put that in to some sort of perspective it is like having Wembley Stadium and Murrayfield Stadium full of supporters. So two major sporting stadiums worth of people in the UK have Ulcerative Colitis. That isn’t considering people who have other forms of IBD, Crohns, Microscopic Colitis etc (again, I haven’t done my in depth reading on these topics). This isn’t an insignificant amount of people and yet as it is an “invisible disease” people don’t know that it exists and it does go under the radar.
My mission for my blog was personal and public. I really wanted to show that there was another side to Ulcerative Colitis and that there was a side where yes, you had to make lifestyle changes and things were a bit different. Maybe you got more fatigued than your mates, or you couldn’t have McDonalds EVERY day but actually, with the correct treatment plans, you could live a pretty normal life as long as you chose to manage it effectively. In this I wanted to show that as the statistics suggested, surgery was not the only option. Clearly, it is not the end of the world to be having surgery, I do also want to state that, but as someone who was embarking on this journey, I needed to hear that there were a number of options before it got to that stage and so I am hoping that my blogging and ramblings might help other people who are newly diagnosed to have some of the positive thoughts that I did.
As I started talking more and more about Ulcerative Colitis and publishing my blog, I had more people coming to me saying “I have Ulcerative Colitis and I haven’t had surgery and I live a basically normal life” (whatever normal means). These comments showed to me how important it was to get that message out there.
So this is why I decided to start MeandMyColitis.co.uk. It is by no means written from a medically correct standpoint. I don’t get everything perfect and I am by no means a poster girl for Inflammatory Bowel Disease. I am learning just as much as everyone else that goes on this journey. I started this as a way for me to talk about my experiences (highly therapeutic in my opinion) but also to give some hope to people who are newly diagnosed!
Please reach out and chat to me and I will always try and help. I am just someone that might be a couple of months ahead of you in the journey! If you are new and starting out, I know that it can be overwhelming and when consultants keep mentioning surgery it can feel a bit like that is going to be the only route that they are going to go down but it is important to keep perspective and realise that it is not the only option and this blog is living proof of that!
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Well done sweetie like yourself when I was diagnosed with Diverticular disease the focus seemed to be on worst case scenario and surgical intervention possibly resulting in a stoma – that was a number of years ago and I have managed my condition with only one flare up resulting in hospitalisation (not long before lock down). What your block is showing is that there is life after diagnosis and you are responsible for your own management. You are also proving that it can be talked about.
I am so proud of you. 👌 😁
It is so frustrating that they seem to revert straight to the worst case scenario and tell you all about it. When you think about it being 30%, it is not THAT high and I think that should be seen as the first thing to say.
It can and has to be talked about! It is so important because as with anything, the only way to remove stigma is to have discussion. I would truly rather people ask me questions about it even if they seem like embarrassing questions and learn rather than sit there and wonder and make assumptions!
Thank you so much. x