James’s Story – Achalasia

Achalasia is a condition that affects the nerves and muscles of the oesophagus (food pipe), mainly at the lower end where it meets the stomach. Achalasia hinders the passage of food and fluid down the oesophagus and entering the stomach which results in difficulty swallowing.

Tell us a little bit about yourself

“I’m James, I’m married with a 3-year-old daughter. Before my achalasia journey I did karate for 8 years and even managed to become an intermediate dan grade! Now, I’m a keen cyclist. My wife and I also renovated our house, which was a long journey taking 2 years to complete, but it was worth it!”

When did you notice your first symptoms?

“On my birthday last year, my wife (Julie-ann) and I decided to get a takeaway. Julie-ann noticed me struggling to finish my burger. This wasn’t like me, I’m normally the first person to finish. But I was struggling and felt sick.”

“If I’m honest, I didn’t take much notice that I couldn’t finish meals at first. But then a strange ‘chest pain’ started and I rang 111. From this point on I knew something was wrong. But it was really difficult as achalasia is invisible. When I rang 111, they were asking me questions like ‘are you bleeding?’ I didn’t know what was wrong, but I knew something wasn’t right.”

“I had a phone consultation with a doctor midway through the lockdown in 2021. NHS services were delayed, and no one saw me face to face to see what was wrong or how much weight I was losing. My mum rang the surgery pleading with them to take me seriously saying ‘he’s wasting away in front of us’. At the time it was hard work getting a doctor to understand, having someone else in my corner helped.”

How long did it take for you to be diagnosed with achalasia?

“It took 5 months of referrals until I got my achalasia diagnosis. Those 5 months were hard. We were living with my parents whilst renovating our house. We’d sit down for dinner, I’d have a couple of mouthfuls and I’d have to go be sick.

I found these 5 months frustrating. I was hungry, tired, and fed up. I just wanted to eat normally again. The only thing I didn’t struggle to eat was jelly babies.

I also have a manual labour job, so I was exhausted. I would come home and sleep. I even had to take extensive time off work.

How did you feel when you finally received your diagnosis?

“I ended up having an oesophageal manometry (a test measuring the pressure waves in the oesophagus).

After this test, I was finally given the diagnosis of achalasia. I felt relieved. They’d finally figured it out and something was going to be done about it. I had dilatation treatment, where they stretch the narrowed part of my oesophagus. This helped for a day or 2, which led to another trip to the hospital to discuss having the heller’s myotomy operation. (This procedure is performed using keyhole surgery, it is used to cut muscle fibres of the sphincter, aiming to permanently improve swallowing).”

I was also referred to a dietitian as I was becoming too weak for the operation. It’s safe to say they weren’t happy with my Haribo jelly babies’ diet! I was booked in for a feeding tube.”

How is your day-to-day life living with achalasia?

“When I was first in hospital, I had a lot of hope for the future. I was even planning a family barbeque in August. When I told the doctors and nurses this, I received a lot of blank stares. I wasn’t prepared for what was yet to come. 

When I was in recovery, it was hard for my daughter Jaz to see me like that. We’d say “Daddy’s not well, he’s got a bad tummy.” Trying to explain to a 3-year-old that Daddy can’t eat and has to have a feeding tube is difficult. Understandably she was intrigued by my feeding tube, but she would want to touch it.

When we’d go to the park Jaz would proudly tell other families, “This is my Daddy and he’s not very well; he’s got a bad tummy.” People would stare and have questions. I don’t mind. I’d rather people know about feeding tubes and achalasia. 

Now though, I don’t think people would know I had been so unwell. I am doing much better. I can struggle with foods like bread, but I avoid them and eat slowly.  If not, my food becomes stuck.”

Two months ago, I had to go for another endoscopy (camera to look at my oesophagus). They found a viral fungal inside of my oesophagus which apparently is quite common.”

What do you wish people knew about achalasia?

“I wish people knew about achalasia in general. I was at work once with my feeding tube and someone asked, “Are you not going to take your bag off today? It’s dinner time”. I had to explain that this bag was my dinner. It’s important to educate people then maybe others can be diagnosed quicker and not have to suffer for as long.”

Why did you choose to support Guts UK?

“What I can do is ride a bike! In September I’ll cycle 100 miles around the Peak District for Guts UK. Riding a bike is easy for me, I just needed to do something to help other people. 

It meant a lot to me to find other people going through something similar through Guts UK. I took part in the #GUTSelfie campaign. Now when I see others who have feeding tubes, some people for life, it takes me back. I don’t miss those days. But to be able to support each other is the best way forward, rather than suffering in silence. People deal with things in different ways, but to be able to talk about it to someone who’s been through it, is better than being alone.”

Guts UK can only continue helping and reaching people like James with your support. Please donate to Guts UK today. Together, we will get to grips with guts! Thank you.