Ian’s Story – Achalasia

Tell us a little about yourself

“My name is Ian. I’m 44 and live on the coast with my partner and our three children. I recently started a new job as a support worker for adults with disabilities. In my spare time, I volunteer as a Coastguard Rescue Officer, ready to respond to emergencies whenever they arise.”

When did your achalasia symptoms begin?

“My symptoms began around February 2022, starting with difficulty swallowing vegetables and regurgitating food. Over time, it worsened with every meal, and I lost a lot of weight quickly, which left me feeling drained.

By August, I had visited my GP, who was brilliant. She quickly arranged an endoscopy (camera down the throat) within two weeks. This was when achalasia was first mentioned, and I was then referred to specialists for further tests.

I then underwent a barium swallow test (a test that involves drinking a white liquid called barium that highlights the outline of the oesophagus, the food pipe) and a manometry test (a test that measures pressure waves in the oesophagus). I received my diagnosis of achalasia in November, about eight to nine months after the symptoms began.”

How did you feel to receive your diagnosis?

“When I was first told I might have achalasia after my endoscopy, it felt like my world had stopped. It was mentally hard to begin with. I wondered if I would ever be able to eat normally again. Doing my own research on the condition was overwhelming. Most information focused on how people who could not swallow or eat anymore. It was a complete shock to my system. It felt like a grieving period. Grieving that my relationship with food and drink would never be the same.

I get some support from friends and family, but it can be tough. They’ll ask if it bothers me when they eat in front of me but say, ‘I don’t mind.’ Going out for a meal, though, that’s hard. I’ll go but I won’t eat anything. Missing out on family meals has been the hardest part. The casual things, like grabbing a McDonald’s on the way home, just aren’t possible anymore.”

How are you now?

“It’s still quite hard for me. Overall, I’ve lost around 5 to 6 stone quickly, which has been draining my body. Eating and drinking are challenging; some days, it’s hard just to drink, let alone eat. I can still live a normal life, including working out when I can. I’ve learnt to listen to my body by taking it easy on harder days and doing what I can on good ones.

Earlier this year, I had Botox (a temporary treatment where a substance called Botulinum toxin is injected to relax the muscle fibres in the sphincter), which helped for a short while but only lasted three or four weeks. By April, my condition worsened again. Now, nearly every meal is a challenge. Simple things like porridge take me an hour to eat. I try to avoid spicy food and stick to what I can handle, even though it’s hard, especially when food is a big part of life.

My dietitian has been a great help, offering advice on high-protein, full-fat foods and providing nutritional supplement drinks to help me maintain my weight. Initially, I didn’t need them after the Botox, but I’ve had to use them again recently.”

What are your next steps?

“I feel a little apprehensive about my Heller myotomy surgery (a procedure that cuts the lining of the oesophagus and stomach), but it has to be done. I am looking forward to the first drink of water, to feel it go down smoothly without having to take tiny sips and struggle to get it down. I know there is a chance that it might not work and that my symptoms will come back. It’s a major surgery, but for me, the long-term benefits outweigh the operation.

After his surgery in August, Ian told us: “Everything is going well, and things seem to be healing nicely. I’m feeling positive for the future.”

What’s one thing you want others to know about achalasia?

“One thing I want others to know about achalasia is the daily struggle it brings. Some days are very hard, and they can feel long and dark. But it’s possible to get through them. You can manage with the proper support from friends, family and support groups. It’s important to listen to your body. If it says no, then you need to respect that and take care of yourself.”

Why do you want to share your story?

“Once you move past that grieving period, things get a bit easier. I chose to stay positive and focus on helping others in the same situation. This led me to create an Instagram account to share my journey with achalasia. Connecting with others following my journey and sharing theirs helped me find comfort and support.

Volunteering at Achalasia Action as a Social Media Coordinator has been a big help. It’s comforting to connect with others who have similar experiences, though everyone’s story with achalasia is unique. Some people can handle different foods, while others have different challenges, but we’re all on the same journey. It’s not always easy to speak to doctors as it is such a rare and misunderstood condition. Awareness is key, and sharing our stories can help others understand and find support.”

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