"You can’t understand until you are in that position”

Friday 17 May 2019

A 19-year-old islander has shared her experience with a chronic condition - which led her to spend weeks at a time in hospital and miss out on time with her friends - to help spread the message that not every disability is visible.

Jessie Gallay was diagnosed with ulcerative colitis, a type of inflammatory bowel disease (IBD) that damages the colon, when she was just 15.

There are about 400 islanders affected by IBD but there’s still little public knowledge about it and the impact it can have on a person’s life. Both ulcerative colitis and Crohn’s disease – the other form of IBD, cause diarrhoea, tiredness and fatigue, loss of appetite and weight loss as well as cramping pains and anaemia. 

With World Inflammatory Bowel Disease Awareness Day just around the corner on Sunday, Jessie decided to share her story to share some insight into the condition with Express...

Pictured: Jessie was diagnosed with ulcerative colitis when she was just 15.

She was on holiday when she started noticing she was sleeping a lot. “I was taking naps all the time,” the young girl said. When she got back home, Jessie started having bad stomach pains and “spending a lot of time on the toilet.” 

Tests revealed there was in an inflammation in her bowel and Jessie was put on steroids before being sent to Southampton Hospital for more exams and blood tests with a specialist. 

Vicky Barratt, her mum, said she worried about Jessie having bowel cancer but breathed a sigh of relief when the doctor said it was ulcerative colitis. “Her bowel was so damaged, it was 90% ulcered. The doctor said it was one of the worst cases he had seen in someone young.”

Pictured: "At one point, I was taking 28 tablets a day," said Jessie.

“It’s not curable,” continues Vicky. “Once your bowel is damaged it’s never coming back. So you have to find medicine that works for you and dampen down the symptoms.”

Jessie spent years on an ongoing cycle of taking drugs, her body producing antibodies to them and having to start all over again with new drugs. “I was sometimes in hospital for weeks. At one point, I was taking 28 tablets a day. There were infusions, IVs… I was constantly on and off steroids.”

Early last year, doctors were about to start a new treatment for Jessie but they warned her it could take up to six weeks to work. “My body was leaking toxins so in February 2018 they said they couldn’t wait any longer and they told me I was going in for surgery the next day.”

Pictured: Jessie's hospital days are not behind her.

Jessie’s large bowel was removed and replaced by a colostomy bag, a small pouch used to collect waste from the body. After being ill for two years and nine months, Jessie says her life is much better.

“I still struggle with tiredness but I’m never in hospital. The bag is just what I deal with now. Sometimes I almost forget I have it. I can do what I want, much more so that when I was ill.”

One thing Jessie says she would have never been able to do when ill is going to uni but she is now prepping to leave for Southampton University in September to study sport. “It’s something I can do now,” she says.

Pictured: "My life is much better now," says Jessie.

Jessie has always been open about her journey and is keen to raise awareness of IBD and other 'invisible' conditions. “When you look at someone you can’t tell they have IBD or something else. Don’t judge them if they’re using a disabled toilet or if they’re sitting down on the bus because they’re feeling tired. It’s just a level of understanding.”

Vicky says that Jessie’s college sometimes lacked a bit of understanding. “When she was ill, her fatigue was ridiculous. She would sleep 18 hours out of 24. They couldn’t understand what she was going through. They would ask if she had been partying the night before if she was tired. Many people don’t understand that with IBD there’s the chronic fatigue." 

“I had to miss out on so much,” Jessie adds. “I couldn’t go out with my friends because I was too tired. Some of them thought I was just being lazy. It’s something you can’t understand until you are in that position.”

Pictured: Lesley Pitman, the Gastroenterology Clinical Nurse Specialist at the Hospital. 

Jessie’s message echoes that of Lesley Pitman, the Gastroenterology Clinical Nurse Specialist at the Hospital. She is calling on local businesses to join in with a UK campaign to put signs on disabled toilet doors which state “Not Every Disability is Visible”. 

The campaign was launched by the charity Crohn’s and Colitis UK to raise awareness that many individuals are affected by “invisible” chronic conditions and need the use of accessible toilet facilities.

With the help of her colleague her colleague Sue McAllister, Sister Ptiman has also set up a support group for those with IBD which will provide self-help strategies to help them deal with their disease such as mindfulness techniques. 

Pictured: Crohn’s and Colitis UK's campaign aim to raise awareness that many individuals are affected by “invisible” chronic conditions.

Sister Pitman said: “Inflammatory bowel disease can be a debilitating condition, which due to its largely hidden nature, can leave those with the illness feeling isolated and suffering in silence. World IBD Awareness Day aims to inform the public about this disease and the effect it can have on a person.

“A key message that we want to get out is that not every disability is visible and it is important not to judge why someone may have accessed a disabled toilet. That’s why I’m hoping that Jersey restaurants and pubs will take up the campaign already in motion in the UK to place signs on disabled toilet doors to say ‘Not Every Disability is Visible’.”