My experiences.

I would like to record my own story here, not because I think it will be helpful to others but because I feel I should. I warn you, once I get started I will go on for a while - there is twenty years worth of experience behind this first post - so there will probably be a lot to read. I understand if readers don't want to read it all. Having lived with Achalasia for so long, you can imagine that I have a lot to say for myself on the subject but I am by no means any sort of expert on the condition or on anything other than my own personal experience and thoughts.

I have lived with Achalasia for twenty years since I was ten years old. Since the Internet made it possible, now and again I take a look online for groups and forums and have found a few; most notably an American Yahoo group. However, in all that time, I have never met another person living with Achalasia face to face. It has been a few years since I last looked and I was quite surprised to find a UK presence online.

The first and most important thing I have to say about Achalasia is that I don't consider it to be a disease. It is a disability. It took me many years to change my way of thinking and resist the medical attitudes and models determined to 'cure' me as much as possible. Experience of working directly with other disabled people helped me realise that I did not have some sort of incurable disease but a disability as valid as those of the people I worked with.

In 1990, at ten years old I began to find swallowing food difficult. Every meal resulted in bouts of hiccups to force food down. Eventually the hiccups weren't enough and I needed pint glasses of water to help. Swallowing was still possible but very difficult and it became more and more so. Then it became painful and I needed more and more water. After a while it became agony. I could swallow nothing without pints of water for every few mouthfuls. Amazingly I somehow managed to hide this from my parents, family and friends for over a year. I don't know why and I don't remember how I achieved what was such an amazing feat of deception. Obviously, as my condition became worse I couldn't hide things any longer; I lost weight, was frequently vomiting undigested food, choking at night and crying in pain trying to eat anything.

My GP was useless and didn't take it seriously. My parents persisted and he referred me for tests. I had the barium meal first, which wasn't too bad until it needed to come out the other side; like passing cannon balls! My GP gave me the results. I had Achalasia of the Cardia, which according to him, meant that my esophagus had become too narrow at the bottom and drew me a diagram of an egg timer to explain visually. Unfortunately my current GP also knows absolutely nothing about Achalasia.

A meeting with the head honcho consultant - I can't remember his name from back then - obviously enlightened me to the reality. He was fascinated that the condition had turned up in someone so young. He advised us that the balloon dilatation was the way to go and that it would probably sort everything out and things would then return to normal. If they didn't, there was always an operation but we didn't need to talk about that just yet.

Of course, like any eleven year old would be, I was petrified at the thought of having a big tube shoved down my throat in hospital. In actuality the experience was bizarrely quite pleasurable. I was away with the fairies due to the sedation and enjoyed every moment. Following the procedure, I vaguely remember giggling at the horrified look on people's faces as an eleven year old zombie was carried out by hospital porters and slumped into a wheelchair. I was sent home with painkillers after coming round and we went straight to the chip shop. I could eat and swallow with no pain like anyone else. That lasted for just a month.

We went to the follow up appointment with my parents demanding to know why all the symptoms were returning. The consultant then decided to tell us that it would probably keep coming back and that I would need repeat procedures. Despite my parents and myself feeling mislead and promised things that were not deliverable, I underwent a lot more of the same dilatations. With each one the time that I enjoyed eating normally decreased until they had no effect whatsoever.

With each one I had also began to experience strange pains during the night. I did not know then that this was acid reflux, as it was never even mentioned as a possibility by either my GP or the consultant. This was before access to the Internet, so there was no googling the symptoms. It was a mystery to me and something I again kept to myself, but I knew it had to be as a result of the ongoing procedures.

At that point I and then my parents refused to consent to anymore repeat dilatations, to the frustration of my consultant. He became genuinely personally hurt and angry with us and began to press for my parents to consent to the operation. This wasn't the laparoscopic Hellers Myotomy back then, this was the full open surgery and the consultant delighted in giving us a graphic description of the process. I was thirteen by that time and no thirteen year old would readily agree to put themselves under that. The consultant brought us back a few weeks later hoping that we had reconsidered, but we hadn't and we then cut all ties with the hospital.

Fortunately, during this time, I had begun to get a handle on things myself. The numerous repeat procedures happily had some small lasting effect. Although the muscle had healed each time, it had unavoidably become a little weaker and I accidentally discovered that if I drank a whole can of Pepsi and resisted against the pressure that built up inside my esophagus it would push itself down. I decided to experiment using it to push down food and to my delight found that it worked perfectly, without pain. To this day, this is still my method of management - although I do not use sugary soft drinks anymore.

I carried on like this until 1998 when I was 18. I grew completely accustomed to my methods and it became the norm. For each meal I would stand to eat and when I felt the pressure build to a significant level, I would gulp down enough fizzy stuff to push the food down. Sometimes it was easy to do, other times it was hard work and involved hiccups, tears and lots of snot but, thankfully, never the agonising pain I suffered as a child. You can imagine, downing that much sugary soft drink and a love of food borne from an experience of going without for so many years, I put on a lot of weight. I was an active teenager, so that helped but I still hit over 18 stone. So obviously my methods worked for me.

That was the good. The bad was that I had continued to suffer the strange pains that hit me quite randomly, usually at night but increasingly at other times too. As an early adopting geek kid I had the Internet by then and used to it discover what I by then already suspected, that I was experiencing a form of extreme acid reflux, GERD, due to the weakening of the LES muscle. I cannot explain to people who haven't experienced it just how painful acid reflux is. So many times down the years when I've explained it to people, they enthusiastically explain how they get bad indigestion too. But this isn't indigestion. It's like swallowing acid - which in a way it is, but the acid enters your esophagus from the other end. My stomach cramps unbearably and I get pain all the way up my back which feels like a mix between being stabbed and burned. It comes in periodical attacks which last for a day or two. Earlier in my life it was totally debilitating. Over the years I have developed methods to deal with it more effectively.

At that time, my increasing weight and the experience of reflux took me back to my GP looking for a resolution. I had discovered that the operation I had been so fearful about so many years before was now possible using keyhole surgery. This cued more meetings with the consultant, who was happy to see me again - without parents this time - and dismissed my argument that I could live with Achalasia if it wasn't for the weight gain and the reflux as simple denial. More bariums, endoscopies, PH tests, manometry tests and pointless balloon dilatations followed. The consultant became even more fascinated with my case; not only was I the youngest case he had ever seen, the manometry tests also showed that my esophagus was completely paralysed (usually at least a third of the esophagus still works in cases of Achalasia). The tests obviously did me no good physically; after each one I began to experience severe ear infections and I was on antibiotics half the time, developing an allergy to penicillin. The sedation no longer worked at all now, so I was wide awake throughout each endoscopy; horrific at first but I quickly got used to it. When I asked about the possibiity of the laparoscopic Hellers Myotomy, I was told that it would be unlikely to work in me at such a young age as I would heal too effectively and I would need it done again, in which case it would not be done laparoscopically . The consultant thought it best to wait until I was at least thirty and to keep trying other methods. His explanation struck me then as unlikely and still does now, especially considering his previous keenness to rip me open as a child.

Coincidentally or fatefully - whichever you believe in - during this time I had begun to do voluntary work, part of which brought me into contact with politically motivated disabled people. They opened my eyes to the issues and politics of disability, especially to the medical approach to disability as a disease or handicap to be cured and experimented with at any cost as opposed to a social model of thinking about disability as society creating barriers which in fact disable people with physical, mental and learning impairments. I began to feel that the actions of my consultant were not in my best interest and that I was being pressured to continue with tests and treatment which did me no good, because of the philosophy of the medical world. I'm not saying this philosophy is wrong. When something is curable, then I would see it cured. But there comes a time to stop and just get on with living life.

So I did. I continued my long journey of acceptance and adaptation to Achalasia, which was now firmly in my mind as a disability to be lived with and managed, not a disease to be cured and frightened of. People die with Achalasia, not from it. A simple switch from regular soft drinks to diet soft drinks helped solve my weight problem almost overnight - I couldn't fathom why I hadn't tried it before, although my weight did behave very strangely after this, bobbing up and down. Achalasia even had its good points. As a young man, going out with friends, I found I could neck a pint of fizzy lager in the same way that I could down a can of fizzy drink in about eight seconds. This became quite the immature party piece. I developed my swallowing method to be even more efficient. I trained myself to gulp air and use my diaphragm to create convulsions, 'hiccups on purpose' I would explain them as, to help swallow when it was difficult even with fizzy drinks. I got to the stage where I could even go to pubs for meals with friends as long as I was careful to choose something small and easy, which I could swallow standing up quickly necking a pint of lager, something I then enjoyed shocking other diners with. I also found that my resilience to the effects of alcohol was abnormally high. I could drink anyone under the table. I can only assume that it was a result of some sort of strange side effect of the Achalasia. I quite enjoyed it when I was young, but eventually I realised it was doing me no good. Now I hardly drink at all.

The acid reflux was still the most major problem. By this time my larynx had been damaged by the acid and my voice is to this day very weak and quiet. It disappears quickly if I have to talk continuously for any length of time; so not great at job interviews or presentations or for debating issues in meetings. People think I'm a naturally quiet, softly-spoken person. I'm not, I just have to save my voice and when I do speak, it often lacks the strength it should have.

I went back to the medical establishment a third time when I was 27 after getting married, when my wife and I discovered she was pregnant. I had some idea that it was the responsible thing to do now that I was becoming a father. A different consultant now, but he gave me the same run around and the same test after test and the same severe ear infections. As a result of the manometry tests, this time they gave me medication, Proton Pump Inhibitors, to decrease the amount of acid my stomach produced. I took these consistently for a while and they did work very well. However, the stomach makes acid for good reason. My coping mechanisms for dealing with reflux had evolved well over the years and I decided that complications that the medication might cause weren't a price I was willing to pay in later life. This contact with the medical establishment was even shorter. I had adapted to living with Achalasia too well and was happy.

I am now 30. I live with Achalasia every day and it has become a normal part of my life. My many different methods for swallowing and for dealing with acid reflux have developed over the years. I don't think I have a problem any more with swallowing; I just do it differently from everyone else. I now use carbonated water to swallow after doing research into the sweeteners I was consuming in large volumes everyday. I switched to carbonated water and suffered severe caffeine withdrawal for a week and then what I believe was severe withdrawal from Aspartame, a very common sweetener, which I believe had been affecting my behaviour and health for years, although this is a controversial issue. I had also been dehydrated constantly for all my adult life, obviously not drinking regularly and suffering a consistent headache as a result. Using water means I now get more than enough water and am now hydrated; the headaches have gone, I am much healthier, I sleep better and my weight has levelled off. I have developed a great degree of control over my strange swallowing ways. I go out for meals with my wife, family and friends and simply pop out to the car park every now and again to swallow - not so much fun in winter though - using one of many bottles of carbonated water I carry around in the boot of my car.

I have also refined the art of managing acid reflux and attacks are now rare when they were once common. My bed is raised at the head and I sleep on a wedge, so I am almost at 45 degrees when sleeping which makes a massive difference. I can feel when an 'attack' is coming and can take pre-emptive action; apple sauce, bananas and dried apricots are brilliant at fighting acid. Hot showers and hot water bottles are great for relieving symptoms. Anyone experiencing reflux should avoid milk though; it seems to help but just results in the stomach producing even more acid to compensate.

I am happy now with where I am and how I live my life. My only concerns are for my daughter - as there is some hint of a hereditary factor to Achalasia, but I pray that she will not have to make the same adjustments in her life as I have in mine - and what will happen to me when I get much older.

I do wonder if I should now try again and press for the operation. But at the same time, I am quite happy to live as I am. I can keep my disability hidden when needed but I am always happy to discuss it with people and create awareness of Achalasia. I am aware that I am very lucky and that other people with Achalasia continue to suffer as I did in the past. I am also aware that developing Achalasia as a child meant that I was able to adjust more easily than someone developing the condition as an adult, which must be very difficult, especially at an older age.

At the same time I would like to think that I am proof that Achalasia does not necessarily mean an end to a decent quality of life. It takes a lot of adjustment and overcoming pain and challenges, but it is possible to overcome the effects of Achalasia.

Thanks for reading all or whatever part of this you did. I hope someone is able to take something positive away from it. I shall be trying to stick around on this forum as I have failed to do on others and make a contribution which will hopefully be useful and productive.

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