A brave teenage schoolgirl has revealed her battle against a debilitating stomach condition that may leave unable to eat or drink ever again.
Lily Tock told how she last ate a proper meal in January this year and is now forced to rely on tubes to feed her essential fats and oils, as well as vitamins her body cannot absorb.
The 16-year-old, speaking from her hospital bed , said she wanted to raise awareness of gastroparesis after symptoms including dizziness, nausea and severe stomach pains began at the age of 14.
After being born 11 weeks prematurely, she was tube fed and suffered with asthma, but her symptoms reappeared as she reached puberty.
She was not diagnosed with gastroparesis for two years.
Lily, of Brough, told the Hull Daily Mail : “I’d do anything to eat. It’s like sitting there with something you really want in front of it but you aren’t allowed it. It was very hard at Christmas not able to eat when Christmas is all about food and it’s hard going out for meals with friends and family and just seeing all the nice food.
“I often try to avoid meal times because I just want to eat. I miss many foods like pizza, chicken, chocolate, even roast dinners and vegetables. If I did eat it would cause days in bed vomiting, awful pain, nausea and could cause a life-threatening bezoar, which is where the food can’t move and causes a blockage.”
She is now hoping a gastric pacemaker in her stomach can be fitted to allow her to eat again, but there is a chance the operation will not be successful and she may only be able to eat a very restricted diet.
The South Hunsley student said: “I have to be tube fed through my heart because my stomach can’t cope with food. One of the symptoms of gastroparesis is vomiting and tube feeding means it decreases my chances of being sick. There is also a tube going into my small intestine. My body doesn’t absorb vitamins very well so doctors measure my blood and find out what my body needs. I am also fed fats and oils.
“It took two years to get my diagnosis and these illnesses are very rare so GPs can sometimes miss out on detecting them. I want people to be able to ask their doctors for the tests so they can catch this awful illness early.”
Lily has been fed through a tube since February, which means she misses out on going out for meals and socialising with her friends in restaurants.
As well as gastroparesis, Lily suffers from gastrointestinal dysmotility and postural orthostatic tachycardia syndrome. This means her bowels do not work properly and food cannot pass through her small intestine and her vital organs do not adapt when she moves positions, causing her heart rate to increase to dangerous levels.
“I have to take morphine and Tramadol every day to stop the pain in my stomach, which can make me very drowsy, and when I get tired I rely on my wheelchair,” said Lily, who had to sit her GCSEs while in hospital. “I also suffer from fainting, nausea, dizziness, malnutrition, bloating, feeling full and fatigue.
“I have missed a lot of school by being in hospital and I’m struggling with my A-levels. I had a tutor for my GCSEs but there doesn’t seem to be anything for A-levels.”
Lily is connected to wires 18 hours a day and can lose up to four litres of water during that time from a drainage tube in her stomach, something that has caused great distress for her family.
Karen Tock, Lily’s mum, said: “Trying to look after Lily’s 13-year old-brother Elliot, run a full time business and get to various appointments in Sheffield and Hull is very stressful. It’s very upsetting seeing your daughter in so much pain. It was important to finally get a diagnosis as doctors where starting to say it was psychological or in her head when actually she had a very severe motility disorder.”
Lily said: “The tube going into my heart is called a Hickman/Broviac line, which is used for total parent nutrition (TPN), and is known as a last resort to feeding. It is very risky and can cause serious problems such as liver failure, which means I also have a tube going into my bowel. The TPN solution is made exactly to an individual’s needs, so for TPN a pharmacist will go by what the individuals blood results show they need and they will make the TPN to suit them.”
Her dad, Paul, said: “Trying to manage a full time job and dealing with the illness has proved difficult especially working away with the Royal Navy at times, leaving Lily’s mum to deal with trips to A&E. The diagnosis has been important but has been a long struggle getting there pushing doctors and specialists who don’t really have a huge awareness of gastroparesis.
Last year Lily was hospitalised with sepsis, a life-threatening condition that can lead to organ failure and death. She is currently waiting to see a surgeon regarding a gastric pacemaker, but it is unsure whether the operation will be successful due to her bowels not working.
“Due to these illnesses I have spent nearly 20 weeks in Sheffield Children’s Hospital this year, but I have also met two of my best friends who have the same illnesses as me. We set up a gofundme page and managed to raise £300 for charity Gpact.
“We just want people to be aware of the condition because when we say we have people just go a bit blank and shrug it off. The testing is very expensive and I have had to spend a lot of time in Sheffield, but I am urging people to go and get a diagnosis.”
To donate to Lily’s chosen Gastroparesis charity, visit www.gofundme.com/2ynu33dw. Lily also writes her own blog, which can be found at lilytock.blogspot.co.uk
What is the condition?
Gastroparesis is a long-term condition where the stomach can’t empty itself in the normal way. Food passes through the stomach more slowly than usual.
Can Lily eat or drink anything at all?
Because Lily’s stomach is paralysed, it can’t cope with any food or drink at all, meaning she can only be fed through the tube in her heart.
Is there any ‘cure’?
There are hopes a gastric pacemaker can be fitted to encourage her stomach to work, but even so she will be very restricted and there is a chance it could not work at all.
Is it painful?
Lily is prescribed morphine and Tramadol daily because of the pain in her stomach and she requires a wheelchair when it becomes to difficult for her to walk. Drinking water or even swallowing a tablet can cause unimaginable pain in her bowels and stomach.
How common is it?
Only 6 per cent of he UK population have Gastroparesis, meaning it is a rare illness and can often be overlooked by GPs and specialists.