What living with oesophageal stricture is like

I was four months old when my mum made changes in my baby diet, feeding me food rather than just milk , so she made apple and biscuit mash. My dad was in another room, when he heard my mum’s terrified call – “CATALIN!”. He rushed to the bedroom, where my mum was looking at my face turned purple, with a powerless yet horrified expression on her face. They thought I was dying, if not already dead, during five minutes which seemed to last forever. In the heat of the moment, he grabbed one of my tiny legs, with my head facing downwards and gave me a strong slap on the back, after which I spat the food out.

After that, everything was alright for the next few months. I didn’t choke, but my mum would only give me fluid food, fearing I could choke again. My dad would push me in a pram and see that I was foaming at the mouth. At the time, they had no indication that I could have a medical problem, so they thought the choking was an accident. Only to realise that, as a one-year-old, I was unable to swallow types of food they would hand me and would normally dissolve in the mouth or just easily slide down my throat.

When I was a bit over one year old, my parents felt something was wrong and sought medical advice. It was when doctors started investigations that I was finally diagnosed. A scan revealed my oesophagus had an hourglass shape. The conclusion was prompt – I had oesophageal stricture, a condition which meant I had a narrow area in my oesophagus creating swallowing difficulties, according to Specialist Doctor in Gastroenterology Cristian Costea.

After that, the scurry began – plenty of visits to different doctors for investigations, a clear diagnosis and solutions. But many years later, the cause of my stricture remains unknown. It could be something I was born with or a medical mistake from my first days of life. This means that when gavage was used, a tube through which I was fed as a newborn, the nurses could have carelessly pushed it down my delicate throat and caused a wound which developed into a stricture.

Since my stricture was discovered and up until I turned three, I was having a dilation done monthly. Dilations are one of the common types of oesophageal stricture treatment and helped expand my oesophagus more so that I can eat more normally. This was done through tubes of different sizes inserted down my throat, under general anaesthesia, which wasn’t only bad for my physical wellbeing, but also for my mental health – I was living the trauma of wanting to take the mask which would knock me out off my face before I was falling asleep or when suddenly waking up once the anaesthesia’s effect was gone. I was always restrained by my parents and doctors or tied to the bed. My mum realised how badly this was affecting me and decided on interrupting the dilations indefinitely.

One of the alternatives to dilations was plastic reconstruction of the oesophagus – this meant I would have had the problematic part of my oesophagus cut out and replaced. This surgery could have saved me two decades of choking, but the recuperation would have involved a long time of me being fed through my stomach, so my parents refused it.

So the long-term plan was to wait and see how my condition would develop and seek treatment depending on that.

Until I turned seven, everything I was eating had to be mashed, something which was always done manually by my mum, using a grater. No wonder her fingers are now curved – her hands tell a history of pain, care and love.

Most of the time, I would eat and vomit half of the food because of one of the most common oesophageal stricture causes, GORD (Gastro-Oesophageal Reflux Disease). GORD is commonly encountered in people and it involves having stomach acid flowing into the oesophagus. It affects a significant amount of people according to Dr. Costea, and although not all untreated GORDs develop into oesophageal strictures, a lot of strictures could be prevented if people did not ignore symptoms such as recurrent retrosternal pain.

As a teenager, things were somehow worse, because I became more aware of my medical condition. My oesophageal stricture left me with strong anxiety. I would have a meal with someone and suddenly I would have to run to the toilet without any explanation. They would be left confused, not knowing about my condition, and that in those moments I panic so much that I’m unable to speak. In some situations I would say no to food, to avoid choking. Alternatively, I would just chew very slowly, which also made me uncomfortable – I hated seeing someone waiting for me to finish my meal ages after they did. Over the time, I learned to live with my social anxiety, but it was difficult to teach myself to only worry about my wellbeing and realise my problem was nothing I should be embarrassed of.

As years passed by, I was choking daily during at least one of my meals, because the dilations I had until I turned three were only temporarily beneficial. My oesophagus narrowed again (having never actually been at a normal size) and my care while eating was diminished. It inevitably became a routine activity in my usually stressful life, which I would do quickly because of hunger and occasional time pressure. This meant that whenever choking I was always making trips to the bathroom, to try and get the food out, because drinking water to push it in would often be an ineffective solution for me.

One of the most terrifying experiences I have been through was in my first year as a Journalism student at the University of Sheffield. This was the first time in my life when I had been away from home for a prolonged period of time. I was in exam period, excited to have finished my first exam and expecting really good results. To celebrate, I cooked pork steak for dinner. Although hard to swallow, it was a food type I did not want to refrain myself from because of my condition and thought I could simply chew carefully. As I was having some, I accidentally choked on a steak piece and rushed to the bathroom.

After two hours of struggling to get back to normal, I decided to go to Northern General Hospital. I was exhausted from how hard I had been trying to clear the passage.

Although I drank liquids at home to push the piece down, I was told to have more fizzy drinks despite me insisting on it not working. This is how I spent five hours in the A&E reception, unable to drink anything because the passage was fully blocked. I couldn’t even swallow my own saliva – I basically had to spit every other few seconds. Since I couldn’t drink, my mouth was drier and drier but my body was still producing saliva. After those five hours which felt like an eternity, I was injected with a substance which was supposed to enlarge the oesophagus, thus helping me have the steak piece sliding to my stomach. I was feeling already exhausted and anxious, hoping that the doctors were right and the substance would work.

But that didn’t happen.

What it did though, was push the piece further down my throat throughout my hospital stay. This made it more unbearable and scary, since the deeper it goes, the more difficult it is to take it out. And my visit to the hospital was going to be longer than I expected. I was scared, alone and tired. I didn’t want to scare anyone back home, because what was the point? They would have probably been unable to get a flight while I was struggling and maybe by the time they arrived the problem would be sorted. Or they would have just ended up worrying, crying and unable to sleep.

I was desperately looking for a friendly face or a few comforting words, but was unable to find any. I asked the nurse if they could bring someone to help me, to which I received a cold “We can’t treat you as a priority when other people come here suffocating”. I started crying and asked myself: “Are some emergencies more ‘urgent’ then others? Isn’t the whole point of having an emergency to have it treated as soon as possible?”. This proved to be more serious than it was taken – on top of the obvious inability to carry even basic survival activities out, although rare, complications include pulmonary aspiration, infections and perforation, Dr. Costea said. According to him, aspiration happens when a foreign liquid or solid body pervades the lungs. Luckily, this didn’t happen, but the risk was there.

After waiting for hours in the hospital ward, someone came to see me. It was about 5am when I saw a woman and asked if I can finally have the piece of meat taken out. She looked at me with sympathy: “I’m not qualified to do this. A team of specialists will visit you in the morning”. She didn’t know an exact time so all I was left with was hope, as I was watching other people in the ward sleeping through their pain. I wanted to do the same but couldn’t, because I had to continuously spit in a bowl. This meant I was unable to sleep, eat, drink and even utter more than a few words at a time.

The doctors only came to me in the afternoon and announced another terrible night ahead because they were searching for doctors from another hospital to carry the intervention out.

The second night was even worse. I asked the nurse to at least put some intravenous liquid for me, because I was getting dehydrated. She told me she didn’t have any news about the doctors and left me in the dark and silence of the night, in a hospital ward where I had no motivation left to endure that suffering.

Next day, a doctor visited me and said: “I don’t feel qualified enough to do the intervention.” I was in pure agony , so I replied: “I’d rather take the risk than endure one more minute of this.”

Throughout my hospital stay, my mum called at least once a day, so it was hard to avoid picking her calls up, as I would have probably ended up bursting into tears or unable to talk. So I kept lying to her that I was studying in the library. But after I came out of the intervention, I called her and told her what I went through: “How did this happen? Are you okay now? Why didn’t you tell us?”, she said in a wave of questions and started crying.

When I went home, my mum insisted on preventing this from reoccurring while I was at university, without their support. So, I had another dilation like the ones I did throughout my childhood, but technology had improved meanwhile – the endoscopy this time was more than just having multiple tubes inserted. The new technique involved an endoscope inserted through my mouth towards the stomach and a balloon at the end of it expanded my oesophagus.

I was given a special diet and omeprazole, a medicine which my doctor told me would help treat GORD, and heal and prevent strictures. I might need another intervention in the future, but I am optimistic that my oesophagus won’t narrow again for as long as possible. I still have to chew carefully whenever I eat because I don’t know when or if my oesophagus will narrow again to the size it was, and I do get the feeling of choking sometimes.

This latest intervention has helped me to eat normally for about four years now, the longest time I’ve ever enjoyed food without choking on a daily basis. I did have a recent choking incident at a party, which left me shattered for the rest of the night. I now cherish every day of eating normally, which most of us take for granted – and what a remarkable feeling this is.

2 thoughts on “What living with oesophageal stricture is like

  1. ” Difficulties in your life do not come to destroy you. But to help you realise your hidden potential and power. Let difficulties know that you too are difficult ” A P J Abdul Kalam. Don’t worry. Every thing will be OK. GOD BLESS YOU.

    Liked by 1 person

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