Tube Faced

“Eosinophilic Esophagitis- hard to say, even harder to live with.” 

Imagine waking up one day and not being able to swallow food. At the age of sixteen this happened to me. Food would sit in my throat in a painful lump, constricting my oesophagus more and more until eventually, I had to give up and leave my plate full. I would then spend the rest of the evening with what I now know is called a ‘food impaction,’ in which the sufferer often has to go to hospital to have surgically removed.  Gradually, over the course of hours, this impaction would shrink bit by bit on its own. Sometimes this took over twelve hours and I would go to bed with a food impaction and still wake up with it the next day.

Doctors began to run numerous tests:

Upper Barium Meal- swallowing a liquid suspension of barium sulphate and having x-rays taken of the upper digestive tract whilst being tipped around on a metal board.

Manometry Testing- finger width sized tube inserted into the nose and down the throat to the stomach. Food is then eaten and water drank to measure the muscle movement of the oesophagus.

ECG- monitored my heart beat to find any abnormalities.

PH Testing- thin tube inserted into the nose and down into the stomach to measure levels of acidity over the course of a couple of days. Attached to a machine which made a hideous accessory to any outfit.

The majority of people in my life had no idea what was going on- regardless I had no way of explaining it besides the fact I ‘just couldn’t eat.’ The tests above all returned negative. Doctors had no idea what was wrong with me and many suggestions were put on the table from dysphagia to stomach or oesophageal cancer. For a short period at school I became tube face. I rode the bus with my tube in my nose, went to lessons and answered to the gasps of my teachers and peers.

Due to my low body weight, it became a possibility to my family that I may have an eating disorder. Slyly being given magazine articles about anorexia and being followed to the toilet by my mum after meal times started to occur. There was even a point at which I started to believe I was crazy and I could have an eating disorder- especially since the tests were showing no physical problems. I started to worry that the symptoms were all in my head.

After a long time and many hospital appointments there was one test left: a gastroscopy (having a camera inserted into your throat, down into the stomach and then into the small intestine with samples taken from each). It was found that I had white plaques and damaged tissue in my oesophagus caused by Eosinophilic Oesophagitis (EoE). EoE is a rare upper digestive disorder that is triggered by certain foods, causing white blood cells (eosinophils) to rush to the oesophagus and block it, stopping me from being able to swallow food. In hindsight, I know I suffered from the onset of these symptoms from a very early age but did not take any notice of them until they became extreme. Some of my symptoms include:

  • Chest and shoulder pain on the left side that mimics a heart attack
  • Acid reflux and burning of the oesophagus
  • Shortness of breath and a crippling urge to sit down when standing for long periods
  • Food impaction and the inability to eat/swallow
  • Vomiting blood
  • Aching pain in between ribs (epigastric pain)
  • Malnourishment and weight loss
  • Extreme nausea
  • Persistent cough and tonsillitis
  • Heart palpitations
  • Loss of periods

When told this news I felt relieved, the horror of living with symptoms and no diagnosis /misdiagnosis was finally over. However, I did not anticipate the long road that was ahead of me. Very little is known about this disorder- one GP I visited hadn’t even heard of it! The foods that trigger it are unknown and also different in each person. I underwent skin prick testing up my arms to try and find a trigger but this did not reveal much.

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“Carrying around a bottle of water everywhere you go? Classic of you EoE patients.”

The above is what one doctor greeted me with upon a consultation. It then occurred to me that I was now an ‘EoE patient’ and suddenly my life changed. For two years I did not eat any of the following: dairy (milk, cheese, chocolate, yoghurt, ice cream etc), wheat (pasta, cereal, bread etc), gluten, barley, eggs, fish, crustaceans, nuts, soya, legumes (baked beans, peas, chickpeas, green beans, lentils, kidney beans, humus, vanilla etc) and guar gum. I found myself and my parents trawling through the ingredients on food packets, desperate to find something I could eat (who knew whey powder meant milk was present in a food? Or that lysozyme referred to eggs? Or that soya is in literally everything?).

In the midst of my adolescence I had to turn down dinners with my friends, taking unusual and stare worthy concoctions into college for lunch and I couldn’t even eat my own 18th birthday cake!

“Would it be easier to tell me what you can eat?”

The above joke was made to me nearly every time I told someone about my disorder and every time I used the same fake laugh. To put my new way of life into perspective, what if I wanted to stop for a quick MacDonald’s with my friends? Below shows what I could eat from their menu.

Inkedmaccys menu_LI.jpg

A fizzy drink, water, orange juice or apple juice was all I had to choose from. This was the case in most restaurants, cafes or fast food places. I lost a lot of weight during this time and became depressed- feeling isolated from ‘normal people’ who seemed to take a simple, everyday thing such as eating for granted. Most people not even giving meal times more thought than what they ‘fancied’ to eat that day.

I tried a few treatments and none of them seemed to be working, cutting these foods out still did not cure my symptoms and made me so unhappy- this was no way to live, yet I was facing the prospect of this being how I lived forever. Being tube fed was suggested at one point and so was a liquid diet. I almost gave up hope- understanding I would never again live a normal life.

Then, thanks to the research of my caring and determined mum, a miracle solution was found. A paste mixed with steroids which was swallowed and coated the oesophagus, to reduce the white blood cells, was being trialled in the US. My mum and I pushed my doctors to let me trial the medication and it worked. I still suffer sometimes from my symptoms and have to watch what I eat- certain foods such as dairy are definite triggers for my disease, which is something I have learned over time. The steroids come with complications such as thinning my bones, making breaks and fractures more likely and I still have to take vitamin supplements to replace the nutrition I do not get from foods. However, this steroid medication has enabled me to go on holiday, visit restaurants and eat a somewhat normal diet.

Unfortunately this treatment is currently not being used as an official treatment for EoE- even though it saved me from a life of misery! EoE is a very under researched disorder and little is known about it. Myself and others recently diagnosed are often used as testers to find out things about the disease. I have written this post to raise awareness for EoE and in the hopes that if it ever reaches a fellow sufferer, they know that there are options. Even though the disorder is rare, more and more people are being diagnosed with it.

Feel free to contact me with any questions, queries or advice on this disorder: l.s.harvey@outlook.com

Love,

Tube Face

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P.S. Please visit the CURED website and feel free to donate- it is one of the only charities raising awareness for my disorder!

 

 

 

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