Kim’s Story – Achalasia
Achalasia – My story
My name is Kim and this is my story after recently being diagnosed with Achalasia. My hope through writing this, is that it helps someone else who is suffering with the same thing or is waiting for a diagnosis and has similar symptoms.
My story starts in June 2016. I’d been living in Spain for 6 years, working as an English teacher, loving both my job and the Spanish life style. I was always busy with teaching and lesson planning, but also found time to go to Zumba classes twice a week and go out with friends at the weekends. One day, a completely normal day at home, I had lunch and then was suddenly sick after eating. I didn´t think much of it and continued with my normal routine. This being sick went on for 3 days but I finally gave in when it got to the point that I was being sick after sipping water and went to A&E in Spain. There I was told I had gastroenteritis and I was admitted to hospital for 3 days as I was severely dehydrated and the doctors seemed worried that I was living on my own. After 3 days on a drip in hospital, I was discharged and told to keep an eye on my symptoms and if things flared up, to go back to A&E. Over the next 3 months, I was in A&E 10 times due to vomiting, dizziness and fainting, only to be told each time that it was gastroenteritis and it would clear up on its own.
In September 2016, I felt my symptoms weren´t clearing up on their own, so I saw my Spanish GP. She gave me a prescription for paracetamol and ibuprofen for 6 months and to go back in 6 months’ time if my symptoms weren’t any better. Things seemed to get a bit better, I was only having a bad day of not being able to eat anything at all once a fortnight, so I got on with my life. At this point I was still teaching every day and going to Zumba classes when I could. December 2016 was when things really started to get worse. I was now being sick nearly every day, so I went back to the Spanish GP. She told me I was stressed and she could prescribe me antidepressants. I kindly refused and got on with things on my own. However, from December 2016 to March 2017, the sickness got worse, resulting in various hospital trips, and now I was being sick 3 times a day, every time I ate. Again, I went back to my GP, who this time said it might be a food intolerance so we went down the route of lactose and gluten testing, which came back negative. I was told I had to figure out on my own exactly what I was allergic to. I knew it wasn´t an allergy, as everything was making me sick. It didn´t matter what I ate, or how much, I would be sick after eating or having a drink. At this point I had to drastically reduce my hours at work, as I was being sick, feeling dizzy, and was so tired all the time. I also stopped going to Zumba classes. Eventually in August 2017, I’d had enough with Spanish doctors and being on my own, so I came back to the UK and saw a doctor here.
The first step in returning to the UK was getting through to doctors here. The first doctor I saw at my local doctor´s surgery again told me it was all in my head and that I was imagining these symptoms, or it could be stress-related. However, I wasn´t stressed, just frustrated that no-one believed me! I gave up with the GP. Move on a few weeks down the line and I saw another GP at the same surgery. The day I saw him, I´d been in bed for 4 days previously, having been sick every day, suffering with abdominal pain, feeling very dizzy, fainting, and sleeping so much as I was so tired. This GP believed me that something was wrong as I could barely walk from reception into his room for the consultation. He made some calls and sent me straight to hospital for further tests and investigations. I was admitted for 2 and half weeks. During this time, I had an endoscopy, colonoscopy, a CT scan and a 24-hour heart monitor, due to fainting episodes while I was on the ward.
After this hospital stay, the second step, since giving up work, was to sort out some financial support for myself. I was first put on Job Seekers allowance, but about 2 weeks in to the process, I saw a very helpful woman who was a benefits advisor. She understood straightaway that I couldn’t hold down a job, or even be looking for a job and attending interviews. She said my health had to come first. All she needed to move me onto ESA (currently Universal Credit) was a sicknote from a doctor. The nice GP who I’d seen, kindly obliged, and I was moved onto ESA, meaning I didn’t have to worry financially and could focus on looking after myself instead of looking for a job.
After being discharged from hospital, I was now under gastroenterology and had a list of pending tests. This was the start of many, many tests and appointments with the gastroenterologist, each to no avail and only to be told they would do more tests. All in all, from December 2017 to October 2018, I had 2 gastric emptying studies (after not being able to complete the first one due to throwing up), another endoscopy (during the first one, no photos were taken, so I had to go through the whole thing again), 2 MRI scans, 2 CT scans, and 3 ultrasounds. Yes, the doctors were very thorough, and every 3 months I´d have a follow-up appointment with the gastroenterologist, only to be told that nothing was showing up on the tests. I was pleased when they kept saying it wasn´t anything serious and nothing to worry about, but I was still worried as I knew something was wrong but doctors didn´t know what. Even my GP called me his favourite mystery patient and was running out of tests to do. At this point I was desperate as I was suffering with abdominal pain, feeling very tired all the time, and being sick after eating and drinking. I was able to tolerate breakfast without any problems but after that, no matter what I ate during the rest of the day, I was sick. I´d been prescribed medication to help with the acid reflux and heartburn, which seemed to be under control, but I was losing weight due to not being able to eat properly. When I was discharged from hospital, I was prescribed Fortisip drinks but all I really wanted was to be able to eat a meal without being sick afterwards.
In October 2018, I went to a hospital in Leeds to have a manometry (swallow function test) which wasn´t the nicest of tests, but it turned out to be the test that led to my diagnosis. Later this month I saw the gastroenterologist who told me I had Achalasia as the muscles in my oesophagus don´t work properly. After nearly 2 years of hospital visits, tests, going round and round in circles, being told it was all in my head, I finally had a diagnosis and a name for my disorder. This was a huge relief. Now I am trying to find a way to manage this disorder. I am currently taking antibiotics, before returning to the consultant in 3 months to see what other options there are. I have a feeling it will be a case of managing the symptoms on my own and researching the disorder the best I can, with little support from the doctors. It´s a wait and see game.