health

What it's like to live with ulcerative colitis.

Sam Cleasby, 33, is a UK-based blogger, photographer and activist who started sobadass.me – an online journal where she documents a tumultuous journey living with ulcerative colitis (which symptoms include inflammation occurring in the rectum and lower colon).

Millions have flocked to her site curious about this woman’s mission to demystify the illness that almost took her life.

“I started the blog as a way to journal my illness, surgery and recovery,” says Sam Cleasby.

“I quickly realised that people were interested in my story and so I began to blog about more than just my doctors appointments. I write about chronic illness, self esteem, body image and general lifestyle pieces,” says Cleasby.

She wears a colostomy bag and poses with it, and her various scars from surgery, on her site – in fact look twice and you’ll miss the bag because she’s preened like a pin-up and lying on a couch looking unpretentious and beautiful.

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Add to this a dose of toilet humour (as only she can from her personal experience) and you’ve got a self-help and esteem building site that has become more popular than she ever anticipated.

She’s already up to two million views worldwide and has started writing her first book.

Sam openly writes about her journey on her blog. Image via Instagram/samcleasby

 

Cleasby’s health scare began in July 2003 when she was pregnant with her daughter and began experiencing renal bleeding. She assumed it was part of the pregnancy and didn’t look into it. Six months later she collapsed and was diagnosed with ulcerative colitis.

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“I had 10 years of treatment and medication until 2013 when the medication stopped working,” says Cleasby of trying to navigate her way to good health with the use of steroids.

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“I was told to have an operation called a subtotal colectomy and ileostomy - this is when the large intestine is removed and the small intestine is brought out through a surgically made hole in your stomach,” she says.

“I had to wear an ileostomy bag to catch the poo for months before having further surgery to connect my small intestine to my anus,” says Cleasby.

Cleasby during one of her hospital visits. Image via Instagram/samcleasby

 

Instead of wallow in self-pity (ok, that did happen for a while, she is human after all), Cleasby decided to take control of her situation, write about it and educate others who might be in a similar position.

“I realised it was as important to write about the bad times as well as the good times,” says Cleasby.

“I never wanted a fake, cheerful website. I wanted to write something real, honest and something that people could relate to. On the days where I feel down, I remember the messages I get from people all over the world and I keep writing for them,” she says.

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Aside from her love of running the Sobasass site, she is a busy mother of three (Charlie, 14, Ellie, 12, and Thom, 10). She also runs a photography company with her husband and works for an arts organisation.

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She grew up in Sheffield with her mum and two sisters (one of them now lives in Australia) and became a mother at 19. She’s happily married to Tim for 11 years – they’ve been together for 16. When he quit tour managing the Arctic Monkeys, they started their own photography business together.

Cleasby and her husband, Tim. Image via Instagram/samclasby.

 

“All I have ever wanted is to help others, to make my terrible health situation into something positive. I feel I shine a light on living with chronic illness and this leads those behind me down the difficult paths we face,” she says of the strength she gains from interacting with others online.

For someone who used to poo up to 30 times a day, humour has been her ticket to freedom. Writing about the painful journey has not only inspired others who face similar circumstances, but she’s also helped encourage other women to embrace their bodies and appreciate themselves for who they are.

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Life has vastly improved with the arrival of the J-pouch. “After the initial huge shock, I got used to my bag,” she says.

“Once you learn how to clean and change it and as long as you have well fitted bags that aren't leaking, you even forget about it from time to time,” she says.

“Of course it isn’t great, but compared to going to the toilet 30 times a day and bleeding so badly I required blood transfusions and was in agony, it was a pleasant change,” she says.

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