By Nathalie Bonney @nathaliebonney
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Videographer / director: Tim Szewczyk
Producer: Nathalie Bonney, Ruby Coote
Editor: Beth Angus
When Amy Lee Fisher goes out to eat it’s not uncommon for complete strangers to come up and start talking to Amy about her health. Because of her feeding tube and slight frame, Amy has got used to people assuming she has an eating disorder - when in fact the 22-year-old suffers from gastroparesis, a condition that makes eating incredibly painful and causes sickness and even seizures.
Amy told Barcroft TV: “I feel like if there was somebody in a wheelchair with no arms and no legs like you wouldn’t walk up to them and go: ‘why are you in that chair?’ So I feel like why do people feel the need to come up to me and assume that I am anorexic or have any eating disorder or some type of cancer?
“The amount of people that come up to me and say things like that, I feel like there needs to be more awareness for feeding tubes and the reasons why people have them – it’s not just eating disorders.”
Immediately after eating, Amy says she experiences nausea: “I feel very, very, very sick. Sometimes it’s so crippling, I just have to lie there. The vomiting comes hours after eating. But in between the point of consuming the food and being sick, I have extreme pain, like crippling pain, crippling nausea, bloating to the point where you look pregnant.
“What foods do I miss the most? Everything, literally everything. At the start it was more junk food but I just miss like a home-cooked meal. You know like meat, vegetables, gravy, like a Sunday roast.”
Currently unable to work, Amy started vlogging in the hope of educating others about living with a feeding tube 24/7 - and to prove that it’s still possible to live a full and active life.
Amy said: “I get hundreds of comments from people saying: ‘you have inspired me’ but I think they don’t realise that they are like my family. Everyday I wake up and I go to YouTube - it’s my first good thing before anything else and I read these comments and it just lifts my spirits and it keeps me in a good place.”
From Manchester originally, Amy spent her teen years living in Australia and after a stint back in the UK now lives in Perth with her boyfriend Tom. Her parents and sister also live locally.
Amy first experienced stomach problems in her late teens – but it wasn’t the only health issue she was battling. At age 15-16 she started to notice pains in her legs.
She explained: “I went to a few doctors and they kept saying that it’s just growing pains and then as I got older things just kept going downhill I suppose - so by the time I left secondary school my health was at the place where I had to get admitted the hospital for the first time."
Amy was eventually diagnosed with Postural Orthostatic Tachycardia Syndrome (or POTS), a heart condition where a change from lying to standing can cause the heart rate to abnormally accelerate.
She said: “After my first diagnoses of POTS, it started to happen pretty quickly. My health went downhill after that and I started gaining new symptoms like feeling sick after eating things and it was then the doctors took a step back and said: ‘hang on a minute there is something else going on here’ and we started looking into other things and getting all these tests done.”
As well as being diagnosed with gastroparesis, essentially a paralysing of the stomach that makes digestion difficult, Amy was also told she had genetic disorder Ehlers Danlos Syndrome type 3 - explaining Amy’s stretchy skin and her joints dislocating up to five times a week. And despite being diagnosed last, doctors realised it was the EDS, which had in fact caused Amy’s POTS and gastroparesis.
With her weight dropping, doctors told Amy she needed a feeding tube to ensure she didn’t lose any more weight.
Amy said: “I was trying pretty high calorie supplement drinks that I drink a few times a day and even with that I stopped tolerating them and I couldn’t keep my weight up.”
Even Amy’s dad Bruce admitted to being concerned by his daughter’s appearance and inability to eat without being sick.
He said: “When Amy first stated to lose weight, I was a little bit concerned
“I did think it was an eating disorder. I really thought that was the case. But realising that it wasn’t. We just had to deal with it.”
At first doctors tried an NG tube, which goes into the stomach, but after her stomach remained unsettled they switched to an NJ tube that goes into the intestine.
Amy explained: “It goes past the stomach so it’s harder to vomit and that went really well.
“My feeding tube stays in 24/7. I can’t take it out because it is one hell of a hassle to try and get it back in.
“I get a lot of stares from the public. You would be surprised how many people say little comments or point.
“I have to understand that when you do see someone that is different you do look or you might give them a second glance.”
In spite of her feeding tube, Amy is determined to lead an active life, wherever possible.
She said: “A lot of people think that you can’t do things with the feeding tube - that you can’t swim, you can’t shower. But that is not the case. You can do everything, everyone else can do. There’s nothing you can’t do with the feeding tube.
“I eat and drink by mouth most days because I don’t want my stomach to just pack up and stop working completely. I want it to keep trying.”
But in spite of her efforts, Amy’s body often reacts badly when she tries to eat food in this way. As well as having to prepare herself for the physical discomfort, she also has to be ready for the looks and stares that come with it.
She said: “When I put myself in a public situation where I go out to eat, if I do have to be sick, then I have got to deal with not only me feeling ill but people’s opinions of me when they have no idea the real reason why I have a feeding tube.
“If I have to go to the toilet while I am out and vomit, I come out of the cubicle and I have had many people say things like: ‘why do you do that to yourself? That’s disgusting. Like - just eat. It’s not that hard.’ When they have no idea that I would love to try and eat a cheeseburger. You know I would love to able to eat and digest food.”
Missing out on her beloved Sunday roast, one thing Amy’s stomach thankfully doesn’t reject is tea - “It’s probably my favourite drink. As a child, being English of course, I grew up drinking tea. And it’s something that I do tolerate very well.”
Together with doctors, Amy is looking at the possibility of getting a gastric pacemaker fitted, although Amy admits this is “experimental” and because of her EDS, she may not be the best candidate: “Because of my Ehlers-Danlos syndrome. My skin is very stretchy, which means the pacemaker is probably not going to stay in place.”
Still going out with family and friends, still drinking tea every day and of course updating her YouTube channel regularly, Amy is proof that having a feeding tube shouldn’t be a reason to stop doing anything in life that you want to.