Am I the longest achalasia sufferer on here ?

Posted , 10 users are following.

First of all can I say that I have read many of the accounts of all my fellow sufferers, and having done so,it has humbled me enormously to learn of the various ways in which each of you have dealt with this condition.

I developed achalasia almost 44 years ago at the age of eight. At that time, there was, as there still is , no fundamental explanation as to why this condition suddenly occurs. All we were ever told was that it could easily go away as quickly as it came, but I am the living proof after such a long time that the presumption of such is very unlikely.

I know I am a very determined person and I knew very quickly that unless I took hold of my situation, this condition would take hold of my life completely. Certainly from certain aspects it did much to upset my life. Even now, after thirty years with my wife, we have never once been out for a booked meal to a restaurant. Our wedding was based on a buffet style meal,(for obvious reasons-I could hardly be seen in focus at the table on that special day, choking because I couldnt swallow properly) and even now we will only go out and eat at our very closest friends houses, who understand what I constantly go through. Also I have never been to any works Xmas \"do\" where a pre planned sit down meal is arranged, or in fact to any other similar event,..I have no choice I avoid all of them and yes in my early years in business due to my inability to socialise this fell badly against me and surely cost me financially. But what choice did I have ?

This next section will perhaps surprise many of you. Many of you will not believe me, and I know if I were sitting there as one of you, not writing this, I too would be doubting, at least some parts of my story.

I have absolutely no idea how serious my own form of achalasia really is,..however I would ask that anyone reading this forms their own judgment,..all I can do is give you my facts and circumstances, and how I live with the condition.

As I said my symptoms started some 44 years ago at junior school. The only thing I have ever had done to me was, that I was sent for a Barium meal which concluded that my osophegus was rendered in a closed state at the base and typically had taken on a birds beak shape. I have never been for any other tests on any occasion and I certainly have never taken any medication nor had any form of surgery whatsoever.

Like many of you, I cannot ingest either food or liquid without feeling either sick or as if I am choking. I am used to that of course. I too suffer very occasionally at night from the instance of food rising back whilst I am asleep, causing the immediate sensation of instantly choking. This causes me to spring bolt upright in bed,.( something I am surprised I have not read of in my fellow suffers conditions posted on here),I have to ensure also that every trace of liquid is removed from my mouth and throat areas before I lie down to ensure that there are no pillow leaks whilst sleeping.

I know from my reading on here, that many of you have only succumbed to this condition over the last few years and I can totally sympathise with anyone who has developed achalasia as an adult. It must truly be terrifying for many of you. As a child sufferer it may be that in some ways the condition has been somewhat kinder to me, I have no idea. All I know is that I found my own way of dealing with achalasia,all be it with so many conditions attached.

Many of you will now be wondering how I have adjusted to having the condition and what I do to ensure I can eat, be it in a forced way. I have no special answers all I can tell you is how I deal with the situation.

Every working day I eat alone. I ensure that I carry at least one if not two flasks with ice cold water in each. Two litres in all. It has to be iced and it has to remain cold. I dont restrict the foods I eat, though I am very careful with beef and steak. It can never be tough or chewey. I know eating this in that form will give me severe problems which even I after all this time cannot control.

In a typical situation I will consume perhaps two normal sandwiches and whatever percentage of my drink (half my lunch) and as soon as I start to feel that sick sensation we all know of I will pour out a large cup of the very cold water, immediately taking it in on top of the food with perhaps four or five gulps of air. For about three to five seconds the food is then forced down past the restriction, and that for me is all there is to it,..that is if everything goes to plan. The usual side effect is that a small amount of water may well come back after the food is passed but this can easily be dealt with simply by spitting it out. With care and some skill it can be judged exactly how much water is needed, but one thing I would say is,..eat sufficient food to force it down, dont try this with only a couple of mouthfulls it just doesnt seem to work and the intake of water will be insufficient to fill the cavity.

I do have to add that it does not always work. Once or so a week it can go wrong and it wouldnt be honest if I didnt add that there have been occasions of projectile vomit occuring !

In the early days and particularly as a child, using this swallowing method I did in fact have for a number of years a situation where I suffered from dreadful indigestion problems. This has lessened thankfully as time has gone by. It has not of course gone altogether, I still do suffer sparse bouts of same but I find that strong mints and fizzy lemonade do tend to help tremendously on these occasions,..... in little sips,.that is !

Please let me say,..In do sincerely understand what many of you have, and do go through with this condition. I know too,.Ive lived with it for a very long time. I had years where I had to endure hiding away whilst I ate, particularly when I was at senior schooI. In fact at that time I had the sole use of a classroom at lunchtimes for almost five years, dodging every day around prefects so as to avoid telling them where I was going. Even that stress I feel sure made matters worse for me.

I have one final point,..stress. I am thoroughly convinced that any form of stress will indeed worsen this condition. I know from my own experiences that there have been times when certain matters, not related to achalasia, have troubled me, and even thinking about them whilst I am eating and particularly when I am about to take my dose of cold water will totally create havoc with my swallowing performance. I would urge everyone who has this condition to relax as much as humanly possible, start by thinking only about good things,.do try my method,..I discovered it by pure chance,.that was all,..it cannot do any harm.

I welcome any comments,.and will be delighted to answer any questions you may have. Remember I have never had any surgery or treatment whatsoever, I have had this condition for well over forty years and apart from the fact that in many ways it has had a restrictive effect on my life, I thank God I am otherwise in good health.

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  • Posted

    Very thoughtful to share your story. Thank you and may you have 40 more years without any issues.

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