By Nathalie Bonney @Nathalie Bonney
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Videographer / Director: John-Paul Steele
Producer: Ruby Coote, Katie Mercer
Editor: Grant Hanson-Vaux
Suffering stomach aches so painful she would curl into a ball, it took 13 years for Shelby Kiniry to finally receive the correct diagnosis for her digestion disorder - Superior Mesenteric Artery Syndrome (or SMAS).
Prior to that, the 20-year-old was accused of suffering with eating disorders and even wrongfully transferred for psychiatric treatment.
It was only when Shelby’s weight plummeted to dangerous levels that doctors finally correctly diagnosed her with SMAS - a digestive condition that results in the small intestine compressing between two arteries, causing a partial or complete blockage.
Now on the road to recovery, Shelby relies on a feeding tube to receive her daily fix of meals and nutrients in liquid form.
Shelby, from Dallas, Georgia, has a love-hate relationship with her feeding tube - hate because of the restrictions it puts on her life, and love because it is helping her to get better.
Shelby told Barcroft TV: “I didn’t want to look in the mirror at first when I had a feeding tube.
I would be fine as long as I had my clothes on.
“Just because you have a feeding tube doesn’t mean you have to stop living your life.
For a while I did, I didn’t go out, I didn’t go on dates with my own husband.
I literally didn’t want to leave my house and my therapist helped me realise that that is no way to live a life.
“My feeding tube is my lifeline.
It’s how I survive; how I live everyday.
How can I be ashamed of something that literally saved my life?"
It took several months for Shelby to come to terms with her feeding tube, eventually posting a picture on Facebook, which went viral.
She explained: “I did it for myself because I knew how many people would see that and I just wanted to be open and honest.
“There were only two or three people that said some nasty things but 98 percent of the response was incredible and super supportive.
“If some other girl had the feeding tube and is struggling - maybe being bullied about it - I thought maybe her seeing my post about my feeding tube might make her feel better and inspired.”
Shelby is now managing to maintain her weight and after having to give up university and work, she is now back working as an administrative assistant – all remarkable progress after the earlier years of her life where Shelby not only fought her own body but also the miss-diagnoses so many doctors gave her.
She said: “I first noticed that there was something wrong when I was about eight or nine.
I always had stomach ache, I was always nauseous.
It was always something but countless doctors, countless tests couldn’t tell me what was wrong.
They didn’t see anything and just kind of brushed it off like they thought I was crazy.
“Every time they did the new tests and [I’d} get my hopes up and it would come back clean.
“They thought I was crazy, they thought I was anorexic, anything you could imagine I had a doctor say it to me.
I knew I wanted food. I was a chunky little kid!
“I was almost to the point where I believed them.
I looked at my mother one day like: ‘Ok, am I crazy? Is this something that I am making up for attention?
“It’s hard to stay strong when you are doubted by 20 plus doctors.”
But as much as Shelby came close to believing the doctors, the agonising pain she endured after eating was proof she wasn’t making it up.
She said: “I was shaking all the time.
I get light-headed, dizzy, headaches – you name it I had it.
The only way I can describe the pain is that it is like the hook inside my stomach with an iron fist gripping and squeezing my guts.”
In spite of her poor health, Shelby played basketball at high school and had started to compete in beauty pageants before she reached her lowest point health wise.
“Back in 2015 I lost almost 40-45 pounds in a matter of two months.
They admitted me to the hospital for 16 days for dehydration and malnutrition,” she said.
“I went from being 160 pounds to 117 in two months.
“I looked bad.
I looked really sick: my face was sunken in and I was a grey colour. I was skin and bones.”
Even after another round of tests, Shelby still had no answers.
And as her health deteriorated she had to drop out of university and give up work.
But eventually, 13 years on, Shelby finally has the diagnosis.
For the first few months Shelby was put on to a liquid diet, made up of protein shakes and smoothies but she couldn’t keep the food down and was eventually told she would need a feeding tube.
“When I saw how long it was my heart dropped.
I mean I did not expect to look like that.
I didn’t expect it to be so big,” she said.
“It was hard to get used to, especially with something that long.”
“Having something hanging out of your stomach obviously isn’t the most attractive thing in the world but you shouldn’t be ashamed of something that’s saving your life."
On a practical level, Shelby had to adjust how she did everyday tasks like blow drying her hair and even getting into bed at night.
Her daily routine is also dictated by her tube: every day Shelby comes home from her job at 6.30pm and connects to her feeding tube.
She admits to allowing herself to eat foods occasionally, taking pain medicine beforehand to deal with the consequences.
She said: “Pizza is a weakness for me. I will eat pizza at least once a week.
“I have good days, I have bad days.
Oddly enough coffee is the one thing that always helps my stomach feed better.”
For now, Shelby is happy to be well enough to work again and is hopeful she will return to university to complete her degree in public relations, thanks to her feeding tube.
She said: “It’s my least favourite thing about me now but it’s also the one thing that can make me healthy again.
“This feeding tube doesn’t define who I am. I’m still me with or without the tube.”