Clearing stigma of the ‘secret surgery’
AFTER YEARS OF SUFFERING WITH ULCERATIVE COLITIS, BRÍDE EVANS HAS BENEFITTED FROM LIFE-CHANGING SURGERY
IN September 2015, Lios Póil woman Bríde Evans underwent surgery that paved her way back to a decent life.
She had battled an inflammatory bowel disease for years, but she and her shattered immune system had nothing left to give. It was time for an ileostomy – but while that was the outcome she had most feared, she has never since looked back at that surgery, which brought an ostomy bag into her everyday life, with regret.
Now, two years on, the 22-year-old says it’s time to talk about what was once known as “the secret surgery”, the procedure she underwent after a lengthy battle with Ulcerative Colitis. Saturday was Ostomy Awareness Day and, to mark the day, she felt it necessary to share both her story and a photo of her ostomy bag on social media. It’s an action worlds removed from her earliest struggles with Ulcerative Colitis, when she was afraid to tell her even own family of her struggles due to the stigma that surrounds such illnesses. But by taking actions like the one she embraced last weekend, she says she “might make it a bit easier for someone else to be honest”.
“I was diagnosed when I was 14, and it stole my confidence and my ability to live a normal life,” she says. “I’d kept it a secret up to then, even from Mom and Dad, because I was too embarrassed. Telling someone that you constantly need to run to the toilet isn’t an easy thing to share with anyone.
“It has improved [the attitude towards ostomy bags and inflammatory bowel diseases] because more people know what’s involved now. Before, people might have said ‘Oh… she has a bag?!’ If someone had an ostomy bag, they didn’t want anyone else to know. Thankfully, that attitude has changed – but it needs to improve a good bit more.”
Her description of what she went through during those years emphasises the importance of that point.
“Even from the age of six or seven I had pains in my stomach. The effects of Ulcerative Colitis can include weight and blood loss; tiredness; and being unable to control your bowel, and the effects I had started to get really bad when I went to secondary school.
“I started off on a low dose of medication and steroids, but two tablets became four, and they became eight. I also had to go through fortnightly infusions for my immune system; they used to take anything up to four hours to administer. The treatment used to ease the pain and symptoms for a week or two but then, in my case, everything would crash.
“I’m not bashing medication or anything, because everyone’s different, and what didn’t work for me might work very well for someone else. For that reason, I’m not trying to worry anyone who might be starting off on the kind of treatment I underwent. I would just encourage them to listen to their own body and look out for what they find works and doesn’t work – it depends on the person.”
Weight gain and skin problems began to rear their head in the years leading up to the operation that changed her life, and with her immune system in decline, Bríde went through two bouts of shingles before a battle with Meningitis in May 2015. Unable to take on her summer exams in St Angela’s College, Sligo, she knew the time for an ostomy had come.
“At the back of my mind, I’d always felt that I was going to have to go for surgery,” she says. “I kept telling myself, ‘No, it won’t come to that’, but when I got sick in May 2015 I knew what I had to do.
“I was scared. I didn’t know how people would react. I didn’t even know what clothes I’d be able to wear. But I had no choice, really.
“The surgeons removed my colon and they made an opening on my abdomen for waste to pass through. Afterwards, I woke up in the theatre recovery room; I had the oxygen tube in my mouth and I remembered where I was, and I put my hand on my stomach to feel it. I was afraid to look at it.
“I looked at it for the first time the day after when the nurse was changing it, and that was the hardest part. But it all got easier from there, largely thanks to my family, my friends, my boyfriend, and his family – they all made it easier.”
Since then, regret hasn’t come into the equation. It’s not always easy, but it’s a vast improvement on the sickness that plagued her throughout her teenage years.
“You might have a leak some days and sometime I feel like cracking up, but then I remember how I suffered,” she says. “I had no life; I couldn’t plan anything – sure I didn’t even know from day to day if I’d be able to go to school. I was sick maybe every two weeks.
“Now I can do whatever I want, whenever I want. I have a life now. That’s why I don’t feel I need to be scared of people knowing that I have an ostomy bag; that’s why I posted this to Facebook. I want to make it a bit easier for the next person to choose life.”
NOW I CAN DO WHATEVER I WANT, WHENEVER I WANT. I HAVE A LIFE NOW, AND I DON’T FEEL SCARED OF PEOPLE KNOWING I HAVE AN OSTOMY BAG
Bríde Evans at home in Lios Póil