Sarah Donnelly, from Belfast, lights up rooms with her glowing energy. But underneath Sarah has been fighting a 7-year hidden battle against Crohn’s disease.
She describes herself as, “aged 25 factually, 65 physically and 17 mentally”. In a twist of events, 2020 became the year she finally came down from the cliff edge of Crohn’s disease.
Sarah’s now determined to show other sufferers of this life-long condition, “It does get better”.
(Sarah Donnelly, photographed by Nicole Copestake)
In 2017 Sarah was officially diagnosed with Crohn’s however, symptoms started years earlier. In a spate of denial, she put her constant sickness and increased toilet visits down to changes in lifestyle. “I was vomiting my stomach lining or breakfast most mornings…I should have done something, but I was young and embarrassed. This continued and worsened for about 2 years”, she recalls.
“After precautionary blood and stool tests it showed my inflammation levels were very raised so finally got further tests. But was again misdiagnosed for a few years…by the time I was diagnosed, I had severely active Crohn’s…I also developed extra complications of fistulas, and an abscess”.
At this point, Crohn’s can become life-threatening for sufferers. This uncertain period of Sarah’s life became a “trial and error” game of weight gaining steroids, surgeries, and infusions.
“I’ve actually never felt the same about myself since being on steroids. The uncontrollable changes to your body whilst not getting better is a bit soul-destroying.”
The first infusion; ‘Infliximab’, was initially developed as a chemotherapy drug. “Unfortunately, I then took a bad reaction to it, so was moved to a new infusion called vedolizumab, which I’m still on and thankfully working!”.
This infusion is necessary every 8 weeks for her to manage the disease and stay in remission (period of health). “I can’t move or go long term travelling”, she adds. At her most unwell after multiple surgeries, she had to move back to her parents to be looked after.
Sarah was furloughed in March. Still at a low, she propelled herself into writing as a coping mechanism.
“When I started writing it, I was in a really bad place both mentally and physically and just started writing as a release…The information I was trying to research online I couldn’t find and needed some brutally honest information.”
“A lot of people have said they wouldn’t have coped with what I have been through, but I think they could! You don’t realise how strong you are until you have to go through something.”
On her relationship with Crohn’s now she says-
“I’m totally at peace with the ups and downs of it now. I’ve definitely learned to manage it a lot better and listen to my body. None of the restrictions on my life overly bother me now either, they’re an inconvenience…but they’re not the end of the world.”
Sarah’s book, a gut-wrenchingly funny account of living with this invisible disease, entitled ‘Crohnly Get Better, The Memoirs of The Crohnically Fabulous’ is available to buy on Amazon Kindle and is due to be released in paperback soon.
