Clear­ing stigma of the ‘se­cret surgery’

AFTER YEARS OF SUF­FER­ING WITH UL­CER­A­TIVE COL­I­TIS, BRÍDE EVANS HAS BEN­E­FIT­TED FROM LIFE-CHANG­ING SURGERY

The Kerryman (South Kerry Edition) - - FRONT PAGE -

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

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