Thaila Skye: Candid Crohn’s disease blogger overcomes stigma with squeamish stories

Bright, young and witty, Thaila Skye is breaking down barriers with her blog about her life with two stomas

Thaila Skye was involved in the Get Your Belly Out campaign featuring colostomy bag selfies

When it comes to brave confessions, it’s hard to match blogger Thaila Skye: the 29-year-old’s candid tales about everyday colostomy bag mishaps open up a world of intestinal intimacy that most people would want to keep well under wraps.

Skye’s speciality is squeamish stories about the surgery that left her with two stomas, artificial openings into her large intestine. But whether it’s about her bag leakages, hand-sized belly wounds, pus explosions or gut blockages, her adventures are helping shake the shame from bowel conditions, build a community, and push medical technology companies to respond to patient power.

“This is not a traditional blogging topic,” Skye says. “There is so much stigma about anything bowel or bladder-related. They are taboo subjects. When I first got the symptoms, I was embarrassed to go to the GP or talk to my mum. But if someone talks about it openly and honestly, it can make a difference.”

Skye is petite and perky, with outsize glasses and a fast wit. She began blogging, tweeting and recording YouTube clips in 2009 after surgery following treatment for Crohn’s disease. Her posts talk of her everyday routines, including how she does sports, and what she eats and drinks (alcohol is fine, sweetcorn can cause blockages).

She is upfront about the bewildering and terrifying feeling of waking up after the procedure with two bags attached to her internal organs, as well as drains, drips, tubes and catheters. “It was like I was hooked up to the Matrix,” she says. Yet her chirpy style soon earned her an online following and helped forge a confederacy of fellow “Crohnies” and “ostomates” facing similar – hitherto unspoken – challenges with inflammatory bowel disease (IBD).

IBD is an autoimmune disease and a lifelong condition that affects the gastrointestinal tract in one in 250 people in Britain. Like many sufferers, Skye has to deal with a nagging fear of leaks and toilet rushes, not least for her recent wedding. “The problem with poo is that it’s not exactly subtle, and the worst colour to wear if you’re worried about having a leak is white,” she says, adding that if there was ever a zombie apocalypse, she would try to hide in a colostomy bag factory.

Skye is part of a growing army of patient activists. Her critiques of bags and other equipment are heeded by the medical sector, and her feedback led to the world’s biggest ostomy bag maker, Coloplast, changing its designs. “You can’t make a product and not think of the person using it,” she says. It was after she explained the arduous, half-hour effort after a shower to dry her bag with a hairdryer that Coloplast developed a water-resistant bag.

Her frank accounts have reached a wider audience too: she was recently noticed by the Hollywood actor Joseph Gordon Levitt, who included her in his television series HitRecord on TV – appropriately, the episode was titled “The Number Two”. And last year, she was part of the Get Your Belly Out campaign of colostomy bag selfies that also featured the fellow Crohn’s sufferer and aspiring model Bethany Townsend.

Skye had a tough recovery from her ostomy surgery, taking seven months rather than the usual four weeks. She is now protective of her stomas, giving them names: Stan (the ileostomy) and Colin (the colostomy).

But she winces when she is described as a patient. “I felt like a patient for a long time,” Skye says. “We are all patients at some point, but I want to get back to as normal as possible. I am a person with an ostomy bag.”