Yes I want to talk about my Crohn’s disease, but not 24/7
UK blogger, vlogger and filmmaker Thaila Skye is on a mission to annihilate stigmas around life with an ostomy. But she also wants to talk about planning a wedding, BBC’s Sherlock and her peculiar addiction to tea.
This young Brit with trendy oversized eyeglasses and quick wit might strike the casual observer as just another overzealous millennial YouTuber oversharing the mundane details of her everyday life. Sure, Thaila likes to muse about rediscovering old records and her fondness for Oatabix cereal, but her onscreen charm draws viewers in and they soon discover that Thaila has more going on in her life than the average twentysomething.
Thaila, now 28, was diagnosed in 2009 with Crohn’s disease, an inflammatory bowel disease (IBD) that can affect any part of the gastrointestinal tract which starts at the mouth and ends at the anus. On her blog and Youtube channel she thinks back on the time leading up to her diagnosis. “I was in excruciating pain” Thaila says in a video post, “I lost a lot of blood, my nails were brittle and my hair was thin from malnourishment. I was tired all the time and I couldn’t think rationally because I had no energy. I didn’t want to eat, because it hurt.” Crohn’s is an autoimmune disease – meaning the body actually attacks the digestive system. And as Thaila points out, “no one really seems to understand why.”
And in case you’re convinced that you know exactly what IBD is…it may not be what you have in mind. People often mistake IBD (Inflammatory Bowel Disease) for IBS (Irritable Bowel Syndrome), and are quick to dismiss it as something that can be cured by changing your diet. “It can be quite frustrating for an IBD sufferer to be told that a change in diet will ‘cure’ their condition.” says Thaila, “it may help relieve some of the symptoms, but it will not cure it – there is no cure for IBD.”
To make matters worse, Thaila’s weakened bowel was perforated after a colonoscopy in 2010, which led to emergency surgery and the removal of two pieces of her large intestine. Doctors created two artificial openings, or stomas, which allow her digestive system to function in as normal a way as possible. To collect output from the system, Thaila uses two ostomy bags.
Thaila says her recovery was a tough one, but she didn’t spend much time feeling down about what most might consider a major setback. “At first it was difficult to deal with, but my parents had bought me an iPhone whilst in hospital and I was able to go online and research all about it and was able to come to terms with it.”
“After my operation I recovered very well,” she says with a mischievous grin, thinking back on the days when she finally felt like eating again and couldn’t resist the temptation of Haribo sweeties, crisps and chocolate. Indeed, it was the operation that had suddenly made her life more liveable. “I was able to reduce the medication I needed to take and as time went on, I realised I had no more pain.”
Straight talk on ostomy
That’s not to say that life is simple with an ostomy. The challenges are abundant, but that’s what the world’s ostomy community has Thaila for. In her Ostomonday video series, Thaila deals out dating advice, talks about stoma-friendly foods (things like nuts, seeds, popcorn and tomatoes can be a no-go for some ostomates) and shares her experiences of travelling with an ostomy.
She also provides product reviews of the ostomy bags and other medtech made to make ostomy care more manageable. Good technology can make life a bit easier, by minimising leakage, masking odours and allowing for greater discretion. In an interview of the Imagine Being Different blog (run by fellow IBD advocate Stephanie White), she talks about her search for the right combination of bags and accessories to deal with complications likes leakages.
She talks to her peers openly and honestly, without skimping on the embarrassing details that her fellow “Crohnies” and ostomates might not want to discuss openly but actually really want to talk about. Thaila says she started to talk about her condition in a bigger way because that was the kind of open discussion she felt was missing in her own life.
“The lack of openness and support in previous years means that nowadays, people want to talk about their experiences in the hope that they can help others who are going through what they went through.”
Sure, people may want to talk about life with an ostomy but ultimately, it’s just one part of their lives. “I like to think of myself someone who shares their IBD and ostomy story and raises awareness,” Thaila says, “but I don’t bang on about it 24/7. You can tell that from my Twitter feed, really – sometimes I’m talking about ostomy-related topics, but then again I’ll also be talking about how much I loved the latest season of BBC’s Sherlock.”