Crohn’s and Colitis Awareness Week: What it’s like to live with Ulcerative Colitis

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By Nadira Begum

Monday 1st December sees the start of Crohn’s and Colitis Awareness Week – a week that aims to break the stigma surrounding the two diseases of the gut and take action to support the millions of people affected worldwide.

Crohn’s Disease and Ulcerative Colitis are the two main forms of Inflammatory Bowel Disease that affect more than 300,000 people in the UK alone. Despite so many people being affected there is still very little media coverage about these diseases, with few people actually wanting to talk about it openly.

Along comes 19-year-old fashion blogger Lucy Smith-Butler, armed with a fierce determination to help herself and others fight the disease. Lucy was diagnosed with Ulcerative Colitis almost two years ago and has since spent ample time raising awareness about the disease through her blogging and social media.

Along with her family and friends, Lucy has taken part in multiple charity walks to raise money that will go towards funding essential research, while also working hard to encourage open and honest discussions about Crohn’s and Colitis.

We speak to Lucy about what it’s like to live with Ulcerative Colitis, the struggle of finding your feet again post-diagnosis, and how increased public awareness of the disease will help break the stigma.

How long have you had Ulcerative Colitis?

“I started with symptoms in January 2017 and was diagnosed in March 2017, so almost two years.”

How did you feel when you were first diagnosed?

“At first I was just really confused. My Nana suffered with the disease so I knew what it was but I never knew the details. I don’t think I really processed it for a long time as for the first few months I don’t think I had access to the best information and didn’t know where to look. I was scared and didn’t really want to open up about it, but once I started to really understand my disease I was less scared and a lot more accepting.”

Do you think there’s sufficient media coverage about Crohn’s and Colitis in the UK? Would access to more information about your disease in mainstream media have eased your fears?

“Honestly, I think the media coverage on Crohn’s and Colitis is so poor. I recently did a poll where I asked ‘Do you think you’d know more/have more interest if the diseases were seen more in mainstream media?’ and 92% said ‘yes’, which proves my point. There is so little public knowledge of the disease and this is because you don’t see adverts or campaigns or anything at all for Crohn’s and Colitis.

“It affects over 300,000 people in the UK alone and yet nobody knows about it. If more information was shown in mainstream media, I do think it would’ve eased a lot of my fears. I’d have felt less alone, felt like I didn’t have to justify ‘being ill’, and the more public knowledge, the more public funding so may be I’d have felt like a cure would soon be out there!”

How long has it taken you to find treatment that works well for you?

“Nearly two years down the line and I’m still on that journey now! I’ve been through so many treatments. I started on Octasa, Prednisolone (steroids), a variety of enemas, Infliximab, Humira, more steroids, and now I’m finally on a treatment called Vedolizumab, which seems to be working. I’d say I’m 80-90% back to normal which is the most incredible feeling ever!”

Has the disease interfered with your social life or any future plans?

“This disease has been like a rollercoaster ride. I’ve had so many ups and downs, it’s crazy but I wouldn’t change it looking back. If you’d have asked me a year ago I would’ve spoken so much about the negatives, I had to defer my plans for University which are still on hold, I stopped having a social life and I basically lost all sense of myself and who I was. Being in a position now where I have a much more positive outlook, I’d say it has affected my life in so many good ways. I’m a thousand times stronger than the person I was, I wake up everyday feeling a thousand times more grateful for life than I ever did and I cherish everything I do and everyone I see so much more. The disease did knock me down lower than I’ve ever been before but it made me get up, get on and reach way higher.”

If you could go back in time to the moment you were diagnosed, what would you say to yourself?

“I think I’d say ‘Just keep on hanging in there because things WILL get better’.”

And finally, what does the future hold for you?

“I think the future holds a lot of me doing whatever makes me happiest. Right now I’m just working in retail but I still want to get to the University for the Creative Arts and study Fashion Management and Marketing, as before being ill I was set on going there and was SO excited to start that new chapter so I think I want to follow that dream. I’d love to keep blogging about my style, sustainable fashion and also raising awareness about my disease, as it’s something I adore to do. I don’t really know what the future holds but one thing I’ve learnt from this disease is that things can change in an instant, so focus on the now and live life as fully as you can!”

You can find out more about Crohn’s Disease and Ulcerative Colitis at the Crohn’s & Colitis UK website.

About the author / 

Nadira Begum

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