A woman born with a rare condition says a decision she made later in life has paid off.
When Anna Hulme, a midwife from Ormskirk, was born she was rushed from Ormskirk Hospital to Alder Hey Children's Hospital after doctors noticed warning signs of Necrotising Enterocolitis (NEC). Anna then underwent an emergency ileostomy to have a stoma fitted.
This meant that Anna had half of her short bowel removed, leaving only 10 centimetres of her large bowel. Now Anna hopes to raise awareness about the condition for Ostomy Awareness Day 2022.
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Anna, 23, is campaigning to raise awareness for stomas and NEC UK, a charity centred on helping families of children who have suffered the effects of the condition.
NEC is an inflammation of the bowel, which primarily affects premature babies. According to NEC UK, one in 250 live births will be affected. This means that many babies need to undergo surgery to remove the diseased bowel and have a stoma fitted.
Anna has never let the effects of NEC hold her back, as she has recently graduated as a midwife from the University of the West of Scotland. Anna has played an active role in local sport, and even carried the Olympic torch through Ormskirk in 2012.
Anna decided at 13 years old to have her stoma operation reversed for cosmetic reasons due to bullying, however she has recently undergone surgery to have it refitted. She said: “Looking back, I can’t say I regret it, but obviously it would have been better not to do it."
She said: “(After the stoma) I was straight in the pool, I’ve done Park Run, I’ve been out to a restaurant which are big things for people with stomas."
Anna has only recently felt comfortable sharing her story due to the taboos around bowel diseases.
She said: "It’s not a glamourous disease… I wish I could’ve spoken up because maybe I could’ve kept the stoma and I wouldn’t have had to deal with the last 10 years.
"I had an absolute fight getting my stoma back. The first time I went to my consultant he couldn’t understand why I’d want this.
"Now I’ve got it back it's brilliant, I’m loving life. I’ve only had it for three weeks and all my friends have said I look amazing, and I’ve recovered so fast."
Anna is currently volunteering to raise awareness for NEC UK and is hoping for the charity to become more established.
She said: "We’re the first generation of survivors… no one knows what to do with us." It is hoped that a wider awareness of stomas and NEC that treatment in adult services can be improved.
Further information is available at: https://www.necuk.org.uk/ and https://www.facebook.com/NecrotisingEnterocolitisUK
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