Am I the longest achalasia sufferer on here ?

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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.

1 like, 15 replies

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15 Replies

  • Posted

    I've had achalasia for about 28 years, so you beat me. Like you my oesophagus just went in to permanent spasm (i.e. like the birds beak on X ray you mention) but I was losing too much weight (I'm 6ft and went down to 9 stone) and had to have an operation. I had the cardiomyotomy in 1984. That brought almost complete relief but over the years the problem has returned, but not as badly as before. The food often has trouble getting into my stomach and my peristalsis has stopped I think. But if I don't overeat and sit up straight then I generally manage OK.

    But on one point I agree with you. Stress makes it worse.

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  • Posted

    Hello William, thankyou for your input to my initial posting.

    I sometimes wonder just how severe my own condition is,.and I say that having taken into account the huge amount of information posted by other sufferers.

    I have noticed that many of them are able to swallow some foods but not others, and judging by the content written some dont have difficulty with liquids only food. Some are affected by things like rice and bread, but in turn find no difficulty with harder things like crackers etc,... I even noted that one person has to have drinks that are slightly tepid but never cold.

    In many respects I am totally the reverse of all of this,..it is most odd.

    For instance I cannot eat anything or drink anything which stays down on its own AT ALL ,..period ! I always have to force everything down with stone cold or chilled water. I dare not even consider cold water out of a tap,. especially in summer (winter is fine as long as its really really cold) or even fresh off a non refrigerated supermarket shelf,.I just wouldnt get anywhere at all with that. As for food, with the exception of steak or chewy meat( but not always) I can eat just about anything,. another thing,..unlike so many who have mentioned this,..this condition has never caused me to lose any weight,..ever !

    My only huge downside is the cold water situation,.if I dont have that to hand,.always I am totally at the mercy of the condition.

    regards

    Mike

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  • Posted

    Hi Mike

    wot an inspirational story..with no intervention.

    I had the op last year and have had post op pain for a year. 24/7. unsure why despite tests all normal.

    my swallowing is deteriorating, which im dissapointed about,but your story made me feel i might be able to manage it long term without further intervention.consultant talking about dilation already which after major surgery,im reluctant to undergo.

    I decided to post cause ive never lost weight with this condition and you are only person ive come across who hasnt either,its amazing that i can manage chocolate and ice cream with no difficulties.oops. ive felt that i was wrongly diagnosed (tests show i havnt been)cause ive always manged to eat something and maintain weight.

    S

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  • Posted

    I have every sympathy with someone suffering from achalasia for 44 years, I have had it for 14. I only had it for one year before I had the heller operation in 1997, and there is a very marked difference from before I had the op and after. I thank my lucky stars that a surgeon was able to do this procedure and basically take me from the nightmare I was in. I cannot contemplate not taking advantage of the help out there. I can now go out for meals, eat my lunch at work in front of my work colleagues - no one would know there is anything wrong. Before the op a meal could take two hours to go down with horrendous pain. I still get food stuck occasionally, I have to be very careful what I eat because of heartburn, I have to drink a little water whilst eating and occasionally the heartburn gets out of control and I have to take prescribed medication for a little while. I urge anyone out there suffering so much that their life is affected badly to think about having the operation, its the best thing I ever did.
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  • Posted

    Thankyou to both Ellis & Tracey for their input. I'm always grateful to hear anything at all about other peoples experiences, cause I believe that with such a rare condition we share, the more we know, the better all of our understanding will be.

    I totally applaud anyone and everyone who has gone through surgery and I can see from all the postings how each person has responded to the variation of treatments available. I simply chose not to do anything medical at all, and in turn I have had to live with the turmoil of denying myself the social side of eating out,.but for me the most positive aspect in all of this is the fact that[b:ec97cb4448] I[/b:ec97cb4448] [b:ec97cb4448]took control of the condition[/b:ec97cb4448], not the other way round,. and so, have continuously worked my life around it. I believe had I not done so then my situation would be entirely different.

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  • Posted

    Hello all

    I also have decided to post as I too have not lost weight - even though I was diagnosed with achalasia quite recently really about 2 years ago I suppose. I applaud the techniques everyone goes through to manage to eat - I will not eat without some drinks - I find MOST drinks are okay - warm or very cold - but if I get a problem I resort to fizzy ginger beer which usually works.

    I am amazed that some of you have had this condition for most of your lives and have not had surgery - wow!

    I have had a balloon dilation only - but hope to go on some while longer with whatever techniques work to swallow

    Many thanks

    Sandra

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  • Posted

    To fellow sufferers

    After failed botox injection, failed balloon dilation, I referred to Newcastle and within a month was scheduled for surgery, cardiomyotemy. This was carried out last Thursday by one of Newcastle's wonderful surgeons and I cannot believe I have already got my life back. It is early days and I'm still on soft foods until I see my surgeon again in one month but my first cup of tea was better than a glass of champagne and mashed potato, swede, butter with gravy yesterday was better than caviar to me. Don't wish to see the Newcastle surgeons overworked but I would advise anyone suffering with achalasia to seek out their expertise.

    On a visit to my GP yesterday I wasn't recognised as the frail old lady she had last seen at home. Bring on my life again!

    Jean (Northeast96)

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    • Posted

      Jean Northeast 96

      I was just recently diagnosed with achalasia the first part of December 2016. I had symptoms in September but didn't think anything of it. It progressed it got a lot worse mid to late November and then found out that I had it. In 6 weeks I lost two and a half stones roughly 35 pounds not the healthiest way to lose weight. I'm scheduled for a barium swallow Friday and next week I'm going to have a manometry 2 test the pressure in my esophagus or rather if there's any peristalsis. The more I hear from people about the Heller myotomy the more I want to go that route. I'm looking for more of a long-term solution. The less I have to go back for surgeries the better I will feel. How are you doing? Are you back to a more healthy life? Please let me know thank you.

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  • Posted

    As a child I lost loads of weight, dangerously so. After many dilatations I was able to begin managing the problem safely. Unfortunately after finding ways of effectively getting food back in me and loving it because I'd missed it for so long, I actually put loads of weight on. Obviously this wasn't helped by my method of swallowing in the early years involving copious amounts of sugary fizzy drinks. Happily I'm much fitter and healthier nowadays.

    Except for the above, in my twenty years of having this disability I can't say that medical attention has ever provided any positive change in my personal circumstances. For those who experience the opposite I would always encourage you to pursue medical possibilities as far as possible, but to never feel pressured by anyone to undergo treatment you don't think will be beneficial. I just hope that stories like MJDee's, my own which I recently posted and those of others help to show that even if you can't get very far that way, there are still other methods to try in continuing to enjoy a good quality of life.

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  • Posted

    Interesting reading.

    I suffer a load of similar symptoms to you. I have had problems swallowing for the past 6 years or so, my condition has changed in those 6 years from bringing up undigested food first, to now bringing up water or liquid with small food particles 20 mins or so after I have eaten.

    I am on the waiting list for a hellers op. Which I really hope will happen soon (I was given a date of late Nov 2010, but due to pre op complications this has been pushed back)

    Has anyone else not had a problem with weight loss? I am a healthy 13.5 stone, and, providing I have plenty of non fizzy liquid to force food down with, I can pretty much eat anything.

    I share your pain with having the contents of my oesophagus trying to empty themselves in the night, although I find by \"clearing\" it before I go to bed, and sleeping on my back, propped up on pillows I have reduced this occuring.

    Also, I find bringing up liquids embarrassing when I'm in a public place, and I worry about the long term effects on my heath of having liquids festering at the bottom of my throat.

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    • Posted

      Hi i was diagnosed with achalasia in 1981 I had the hellors myotomyand this helped tremendously.However 5yrs ago i began to struggle with food sticking again. In january 2016 i went to my gp because of recurrent idigestion, i was given lansoprazole which helped, however mt gp insisted on an endiscopy and this revealed my achalasia had returned.Also I had megaesophagus. I was treated by dilation 3 sessions ending in August. I am eating really well with no problems and gained a little weight. I am still taking ppi's. I agree stress aggravates this condition and due to recent family stresses I have found a tightness in my throat happening. I am hoping this is just stress and nothing to do with my achalasia. Have you heard ofanything similar. Maz Maz

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  • Posted

    I was diagnosed with GERD some 14 years ago (aged 19) and managed to control this pretty easily with PPI medication and diet. However 9 months ago (March 2010) my symptoms changed.

    It started off with heartburn and hiccups when eating, then nausea and feeling full after only half a meal.

    Over time it became chronically worse, nausea turned into vomiting which eventually led to regurgitation of my food. I would only manage a few mouthfuls of food before it was regurgitated. Cold drinks would send my eosophagus into spasms, causing pain and a burning sensation in my chest. I would be awake at night due to heartburn and acid reflux in my throat. At it's very worse I was unable to tolerate ANY FOOD OR FLUIDS for days at a time.

    I lost two and half stone in weight during this time (from a healthy 13 stone to 10 1/2 stone in 6 months)

    I managed to maintain this weight by using meal supplements and soups and only eating a soft diet, but this too would be prove difficult to keep down on bad days.

    I saw a consultant mid september 2010 who immediately diagnosed achalasia, and sent me off for various tests (Barium swallow, oesophageal transit scan, OGD, Manometry and PH study) over coming months.

    I was unable to tolerate some of these tests due to my dysphagia but the ones I did manage were pretty conclusive of the condition.

    I had balloon dilatation 2 days ago, the procedure was done twice in succession as the first dilatation did not open the muscle enough (only 25mm) and the doctor performing the procedure was concerned that it would not be effective, so with my consent he performed it again with a larger balloon to 35mm.

    He also performed an x-ray 3 hours post op to rule out any perforations etc.

    It's been 48 hours and although It is still early days, I am managing a soft diet with relative ease. There is some nausea first thing in the morning, but I know this is reflux and will take some time to settle down. I have re-commenced Omeprazole this morning to control this.

    I would say that there is hope for people with this condition, the past 9 months have probably been the hardest of my life - apart from the weight loss and symptoms - I used to love socialising and eating out with friends, but this all stopped due to my illness. I could not eat out with my children, and could not go out with colleagues from work.

    I know this condition will be with me forever but hopefully the dilatation will control my symptoms for some time and I can live a relatively normal life again. My diet may need to be altered but that is a small price to pay.

    I have learned how to manage the illness and make changes to my life, so should my symptoms return I can live with them easier until I can receive surgery again. The team have told me already that if symptoms return it is simply a case of contacting the department, make them aware that I am an achalasia patient post dilatation whose symptoms have returned and you get seen within 3-4 WEEKS, which is a far cry from 9 months.

    I find it fascinating that in this day and age of medicine a permanent cure for this disease cannot be found, and applaud anyone who has to live with this disabling illness.

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    • Posted

      I was just diagnosed with achalasia with an EGD. Since Thanksgiving I've lost 35 pounds roughly two-and-a-half stones. Very miserable, I have a barium swallow this Friday and they manometry next Wednesday. The manometry test for pressure levels in the esophagus. I'm very skeptical about surgery but I've been hearing good things about surgery. I am one that does not like to go under the knife. There are two options one is a dilatation which generally can last anywhere from 6 months to 5 years or another option is heller myotomy that is somewhat invasive but the results last longer. The only thing I'm nervous about is that you can rupture the esophagus if the surgeon does not know what he's doing. And how have you been? Have you had to go back for a repeat dilatation? Good thing is I don't have cancer so the doctor says.

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  • Posted

    I'm 58 years old and just got diagnosed with achalasia with an EGD. Since Thanksgiving I've lost 35 pounds. Very miserable, I have a barium swallow this Friday and they manometry next Wednesday. The manometry test for pressure levels in the esophagus. I'm very skeptical about surgery but I've been hearing good things about surgery. But I am one that does not like to go under the knife. There are two options one is a dilatation which generally fails anywhere from 6 months to 5 years or a heller myotomy that is somewhat invasive but I've been hearing good things about it. Is there a reason why you do not want the surgery done? I'm at a loss right now. Good thing is I don't have cancer so the doctor says.

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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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