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.

Music for the mind: “it’s not just fun – you really have to think”

Can music improve your mental health? Various studies have proven that learning a musical instrument from a young age has long-lasting benefits on the brain and develops children’s intelligence in various ways. But what benefits would learning a musical instrument at a later stage in life have?

Nick Davis, 40, is a neuroscientist and a senior lecturer in Psychology at Manchester Metropolitan University. He admits that learning new skills after the age of 25 is psychologically proven to be a bit more difficult, as the brain is not as plastic and able to change after that age – however, Nick believes that taking extra effort in learning new skills can only help keep yourself mentally active.

The advantages of learning a musical instrument are numerous, but from a mental health perspective they can be split into two aspects. They are of interest to both psychologists and people who might want to learn a musical skill, because it means that different experiences and benefits appeal to different people.

First of all, there is experiencing music in an artistic and aesthetic way, which means “learning to understand a new sort of artistic feel, the same way that you can’t really appreciate poetry without sort of thinking about it”.

The other feature of music is that it is an activity, a movement, which involves training your brain to coordinate better. For instance, if you want to learn how to play the piano, you have to coordinate your fingers or if you want to learn how to play the saxophone, you have to coordinate your fingers and your breath. This type of psychological process is very useful, as Nick says that “people who want to learn a new instrument have to develop new motor skills, in the same way that learning to drive a car involves learning new motor skills. “

I was interested in how mature women see their musical instruments learning experiences and here is what I found.

Jill Bentley, 77, used to play the piano when she was a child and has been playing the violin since she was ten. But exactly 20 years ago, before she retired, Jill wanted to take on a new challenge which reflects her rebellious attitude. So she decided to start learning how to play the double bass and she admits she was fascinated by its huge dimensions and the deep sound it makes.

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“I just thought ‘this is a really ridiculous thing really to take on at my age’. I am the only one in the small orchestra that I play in, so I suppose in that way, some of my friends think I am a bit crazy.”

It was when Jill got breast cancer that she realised how isolating it felt not being able to play the double bass in her orchestra, because there is a social side to it, as well as an “artistic challenge”. “You can get sort of wrapped up in trying to make it sound beautiful, trying to fit in with everybody else.”

While she felt frightened about her life-threatening health verdict, Jill was still able to play double bass on her own. She believes that getting lost in playing the double bass improves her feeling of wellbeing. Focusing on it means she could and can stop thinking and worrying about anything else: “I like just playing it to myself, I find that quite therapeutic”, she says.

Now that her operation was successful, Jill feels like her life got back to normal by simply being able to play the double bass with her friends again: “I wasn’t aware of that at the time, but it might have helped improve my mood, just getting back to normal life really and going out and meeting people again. Playing a string instrument is very social because you can go and meet people in an orchestra and make new friends.”

Jill also admits that there are many advantages in learning how to play a musical instrument after the age of 50, but she also says she found it a big mental challenge and she still sees it as a challenge.

“You have to do a lot of working out towards where to put your fingers to get the notes. It’s like doing a crossword or something, you have to work it out. My hope was that it would keep my brain active and I think it is true.”

She is not only trying to keep herself mentally healthy, but also made resolutions about enjoying every single day without getting upset about small things.

“I am aware that it’s worth making the best of every day, especially as you get older and I think playing an instrument enhances this attitude towards living your life at its fullest.”

Seeing how passionate and excited Jill was about the double bass, 50-year-old Penny Pullan, who plays in the same orchestra, started to consider learning to play this outstanding instrument. Penny has a wonderful story about how she was separated from her first love, the violin, and rediscovered it as a mature woman. When she was about six or seven, her grandparents bought her a beautiful little violin and she loved playing it. But her mother decided to sell the violin after six months, because she believed Penny wasn’t practicing enough. “I think it was that SHE didn’t like practicing, because in the Suzuki method they had to play along with you”, Penny recalls. Vanessa Moore, a violin player who uses the Suzuki method when teaching children says this original Japanese technique means “involving the parents in every stage so that they become confident to help teach their child at home between lessons.”

Penny does agree with Jill on the benefit of clearing your mind which a musical instrument offers, because there are other things to think about when playing. Penny says that five years ago, when she started playing the violin, her then nine-year-old daughter found it easier to learn and remember music. She managed to become better than her daughter through hard work, despite admitting that her memory and concentration power are not making learning music as easy as it was when she was her daughter’s age.

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“There’s reading the notes, and then a hand has to do stuff, the other hand has to do stuff and there are all sorts of bio-mechanical things and all the things that my now 14-year-old just does easily.”

Penny admits that relaxing and practising can get a bit too much sometimes, with all the motor skills she has to use simultaneously: “it’s not just fun – you really have to think.” But she believes finding a community, be it physical or online, can be extremely helpful and the retired people in her orchestra now have connections they would otherwise not have in the community if it wasn’t for music: “you will find other people who are struggling with exactly the same piece and they might be doing the same and say ‘try this finger on this bar as it makes it easier’. If something goes wrong, other people will want to help”.

This help goes beyond musical training – the friendships that music bonds seem to help even in the most difficult situations. For instance, when one of the orchestra members fell and hit his head, everyone in the band raised money to help with his hospital recovery.

But there is more to the support you receive from learning a musical instrument, from Penny’s point of view. She found playing the violin an “escape from the full-on relentlessness of being an entrepreneur”. It also helps with going through difficult moments, as she remembers feeling incredibly sad when her family friends lost their daughter to cancer. Playing slow Scottish Laments were Penny’s perfect escape from the painful reality: “they are really sorrowful and all these feelings just pour out of you. After an hour of doing that, I feel much better.”

She admits playing solo is fun , but it can get quite lonely, while also risking getting you more nervous in public performances: “the best thing about playing an instrument, especially in a group is that it does ease loneliness for many types of people. You don’t have to be extroverted to be part of this group doing stuff together.”, Penny says.

She feels like being a violinist in an orchestra means “you’re in a mix of others so you are creating the music as a group and there is something quite magical about that.” That doesn’t mean you are pressure-free as a musician in an orchestra though: “It is harder learning as an adult, because when you’re an adult, people expect you to be competent.”

Now, Penny’s father, who is 82, is getting her a new violin to celebrate his daughter’s 50th birthday.

If Jill and Penny’s stories about learning a musical instrument don’t inspire you to try it out, maybe Nick’s advice as a neuroscientist and psychologist will encourage you to give it a second thought: “I would recommend you try to acquire new skills both because it can protect your brain from mental decline, but also because it’s enjoyable. There is something about engaging in something new that is fun. I think that could be a bonding experience if you do it with friends.”