new member-please talk to me

Hello Sasha

My oesophagus is stretched due to the retention of food before regurgitation.

When I told him I could eat and drink normally again he was very surprised and told me the stretched oesophagus, in my case, had no implications.

I don't know about being an inspiration, I am scared every step of the way!

Take care

Jean

Mike

fantastic to see you back. I kind of assumed that you'd got a bit fed up with my drivel :lol:

How have you been? Ok, I hope.

You'll be pleased to know that I've been taking your advice 100% and I've maintained my positive frame of mind. I've got you to thank for that- your advice and especially your encouragement has helped me a lot.

Remember the clinical psychologist? Well, my husband and my son and I did go over for lunch on Saturday. He lives in beautiful house overlooking the hills. We were all so relaxed and I managed to eat some salad, a bit of chicken and a bit of soup. Only 2 episodes of sickness. Thats an excellent result for me. You're right when you say that being relaxed helps with this problem.

Random question for all: Do you think it's easier to eat with Achalasia when someone else cooks and/ or you don't know what you're getting? The only reason that I ask is because I do all the cooking at home (husband has many household skills but cannot cook so i do it) so therfore have opportunity to panic about the food even before I start eating it. As Mike said, that anxiety cant be any good for the oesophagus.

Jean - yes i'm scared too but your fear doesn't mean that your not an inspiration. I admire you. You're very brave. I admire that everyone on here hasn't let their Achalasia destroy their life and instead, have managed to control it. Thats another reason why I've found yourself and everyone else whose been talking to me inspirational.

Can I say aswel, that my grandparents are 80 and neither have even operated a computer never mind posted on an internet forum. They justify this by saying that computers were not around in their youth so they never learnt - fair enough. You're only 6 years younger than them. Just another reason why i'm facinated with you but I mean that as a compliment. Thats not to say that I'm judgemental towards my grandparents for not learning, or think that everyone above 70 can't operate computers- you know what I mean.

Anyway, I'll stop waffling

Sasha

Hi Sasha

Just to answer one of your questions regarding who prepares the food and the effect it may have on the condition,. I dont believe it makes any difference provided that, in the meal, you are not experiencing any type of food you are not used to. I suppose,what we are touching on here is the subject of [b:c516bb35d3]rejecting[/b:c516bb35d3] eating something rather than the [b:c516bb35d3]inability[/b:c516bb35d3] to take the food in.

If Im absolutely truthful though in my own case, I make no apologies to say that I am a bit of a fussy so and so regarding what I will and wont eat.

A few examples : I only ever eat fresh butter, never never any substitute spreads ie,. Flora, I cant believe its Not Butter,.etc,. Mayonaise,...yuk, (hence never buy pre packed sandwiches)..the very idea of eating vegetable oil mixed with egg yokes makes me feel sick,. without having the condition! Tuna,. no thanks on any account,.or any cold fish within ten feet of a sandwich, unless its fresh prawns with crushed black pepper and sea salt as part of the sandwich,. but these are, after all just personal things to be fair.

Glad you got on fairly well at the clinical psychologists meal,. you were obviously more relaxed there and thats good.

As time goes on, you will find out where all your comfort and non comfort zones are in dealing with this, so take heart and keep soldiering on. Pokey and I are prime examples of doing it our own way. we both found out how to control the condition rather than it control us. Ok we both like to be out of sight out of mind when we eat, but do remember apart from the eight hours or so you sleep each day it leaves sixteen hours, of which you will use up perhaps one hour or so, at most, eating your three meals a day. Look at it that way and its only a tiny tiny bit of your whole existence.

The key to dealing with achalasia in my view comes totally (in the absence of medication and operative procedures) from being able to control your anxieties, so once you find your own personal way to do this, things really will get so much easier. There is absolutely no reason why this condition should rule you 24/7. Eating is a very small part of your life, so please make this a minority issue in your life and do not give it any form of priority at all.

regards

Mike

Hi Mike

Thanks for getting back to me. I hope your well.

I understand what you're saying about not letting the Achalasia rule your life. I'm trying very hard for that not to happen but there are things that I can't control. One problem is creating another.

For example, i discovered yesterday that i've lost more weight and am down to 8 stone 2. I'm gutted because I've been trying so hard as you know. I'm obviously still not getting the nutrition that I need despite my best efforts. Needless to say, I wasn't happy with this news.

I don't know how old others are on here (apart from Jean) but I would still clasify myself as a realitivly young woman. Therefore I'm struggling to accept the affects it is having on my body. I've already explained that I suffer very bad constipation and subsequent hemorroids which I'll probably have to have surgically removed - not very attractive one must admit. Now, it looks as if i'll need breast augementation surgery in addition to this as I have very little tissue left, just sagging skin which makes me look like an old woman.

Might as well say as well that my thighs no longer meet in the middle and my ribcage looks like one of those metal toast racks. I cannot believe that I'm still clasified as normal BMI. As my dad would say, i'm \"wellbuilt\" and tall, so at the moment I'm looking on the verge of anorexia.

Sorry for having a rant here. I thought I was doing a lot better - I probably am, i'm probably just having a blip. I'll probably be back to my positive frame of mind tomorrow. Meanwhile it's good to get it out on here. Thanks for being my online therapists. Your all doing a great job.

Only 2 weeks now till I see the consultant to discuss my treatment options. Just gotta keep plugging away with the fortisips and complans until then.

Meanwhile, I hope your all well. Let me know how your doing

Sasha

Hello Sasha

At the stage you are at with your Achalasia, I don’t think you have much option about how your life is led at the moment. You’re still to undertake any treatment, so I can understand that what you’re experiencing now is complete lack of control over the condition, the help you receive, the way other people react to it and most importantly over the way you feel about this and your life in general.

It’s hard to see how things can get better. Searching the Internet for encouragement is inevitably self-defeating; only the bad experiences really get posted. The good and happy stories generally don’t, so it can seem all doom and gloom. Obviously your health as a whole is suffering greatly and you can’t wait until your doctors will actually take some steps to help.

As I’ve said before, I’m surprised they haven’t had you in sooner. Achalasia at its most affecting stage is usually a priority because of the health risks. However, if you can hold on to the thought of something positive happening then soon you will start to regain some of that control.

I’ve mentioned previously that although a ‘cure’ is not realistic, generally treatment makes things better. Maybe you’ll end up like Mike (although Mike has not sought medical treatment) or myself and able to cope and lead a healthy life with strategies in place, or like others, have few symptoms and a regular life with a few check-ups and the odd procedure every couple of years or so.

Whatever route your life takes, remember the mantra that is very popular with American Achalasia sufferers, that Achalasia is a “disease you die with, not from.” Life won’t stay this bad for you long-term. The treatment you will receive will help you. Focus on that to keep you sane and strong and channel that mental strength to put it to use in making your own choices about your treatment. Don’t let yourself be pushed into doing something you don’t feel is right for you and if you know what options you want to try, then speak up and let your doctors know.

By the way, I’m 30 years old. I’ve had Achalsia since I was 10. Between the age of 10 and 12 I was living similar circumstances to yourself. I lost a huge amount of weight. I could not eat anything, I could drink very little, I was tired constantly, I could not breath, I could not sleep. My transition to high school was poor. During a long course of treatment my symptoms got easier and all of the above went away. The first dilatation that I had had the greatest impact. Since then I went through phases of being overweight, so the problem of malnutrition very much went away.

I’m very careful with my fitness now; I have to be to guard against the side effects of my Achalasia. I have found through observation that I have an exceptionally slow metabolism. I believe this is a result of the long period of malnutrition I experienced growing up. I don’t get hungry at all, even if I don’t eat all day. As eating can understandably be something of a hassle sometimes, I may be tempted to go without all day or just not even think about getting something to eat. I end up feeling very light headed late in the afternoon and wondering why; then realising that I haven’t eaten or drunk a single thing all day. This means that my metabolism stays very slow, and I can put on weight unbelievably easily even though I’m eating very little.

So I make an effort to eat breakfast and to eat healthily and regularly throughout the day and I start the day with an hour exercise. All this raises my metabolism and keeps it up for the rest of the day. As quickly and easily as I can put on fat I’m happy to say I can get rid of it again as well. I’m now much fitter and healthier than I was as a teen and in my early twenties. I lift weights and I run; I’ve been encouraged to take part in marathons and competitive runs but I can’t because I can’t stay hydrated during the activity because I can’t swallow still water. It’s strange but it shows that although I was v

Hi Sasha , If I can just reflect on a couple of comments that Pokey has made. The first (Pokey) is interesting about you dehydrating and

accordingly not taking part in sports. The summer months have always been an utter bind in this respect for me too, until, so dehydrated one afternoon

I substituted a quantity of food with cold water, and holding it in the normal way then used my second dose of cold water to force the first lot down.

Interestingly and rather surprisingly both lots went down ok. Previously to this I always had to eat so that I could take in enough liquids to

combat the dehydration problem, so Pokey perhaps you could try and do the same ???

The other point I was going to make, and please forgive me for mentioning,.... this is the category

in which achalasia falls. A surgeon explained

this to me. Achalasia is not a disease, because you do not contract it nor can it be

caught or passed on as with other diseases ( ie is not contageous). [b:f967c4f76b]Achalasia remains a condition

whilst the sufferer does not occasion (by having it) any additional health problems or bodily deterioration, and is noted by the

persistent swallowing difficulty being overcome or controlled by the sufferer without medical aid.

Once treatment is given for other medical problems arising from having achalasia then the condition may be considered

as part of one of a group of patient problems within a total illness situation. [/b:f967c4f76b]As the surgeon said \"very few people actually know

how to define achalasia and where to place it in medical terms - its a strange one and very often understandably goes mis-diagnosed\"

regards

Mike

Mike

As you've described, I can drink something and then use carbonated water to push that down in the same way. Unfortunately this means a lot of fluid hitting the stomach at once, so while it can be useful for relieving dehydration to a point, it will cripple you with cramp and bloating if you are taking part in sport at the time; especially running. Hydration is better maintained by gradual watering, certainly during sport. Obviously this is not possible for the likes of us, which is why I use fruit as much as possible.

I completely agree with you about the nature of Acahalasia as a condition. As I have stated in previous posts, I very strongly believe Achalsia to be a physical disability. However, I recently had a number of conversations with American sufferers of Achalasia. Their perception of the condition is extermely frustrating for me personally; the majority refuse to recognise Achalasia as a disability and refer to it as a disease. This seems to me to be rooted partly in an American definition of disease which is wholistic and captures physical and mobility disorders as well as infections and viruses. It also seems to reflect a poor and oppressive perception of disability: many tell me that Achalasia is not a disability because people can still work and cannot draw social security disability benefits. For me this attitude is extremely oppressive and assumes that disabled people cannot work and must be looked after. The mantra so often repeated by American Achalasia sufferers of a 'disease you die with, not from.' is in my opinion inaccurate in that Achalasia is not a disease, but accurate in that it is not a disability that well end your life prematurely. I only quoted it in my previous post to highlight the latter fact.

Hi Sasha,..( in reference to Pokeys input today). Excellently put in all respects. I have to say though, Ive never considered myself disabled at all in any way. Achalasia for me has been far more of an inconvenience rather than anything else,(the biggest being the non-participation at social eating events)- but looking at it conversely I dont carry any excess of weight ( Im exactly right for my age and height) because I cannot physically take in anything more than a standard plateful per session, so perhaps my ability to cope comes purely from the fact that Ive had it since childhood and for well over forty years and learnt to take with it the other inconveniences from time to time which it has thrown at me (ie,.never forgetting my chilled water 24/7,. making sure Im always close to the loo,.just in case,.staying away from others so I can eat in peace).

It is true of course, once you fall foul of the condition you have to re-tailor your lifestyle to suit it. Its a bit like owning a Dobermann Pinscher,..it doesnt learn to live with you,..you learnt to live with it !

Pokey, yes I would agree on the water on water issue,. I too have found that it does cause additional bloating, but fortunately I dont get it excessively thank heavens, though when I first tried it, it did cause indigestion which if I get it now is fairly quickly dispelled with sips of ice cold lemonade or Seven Up or similar. Funnily enough I can also use chilled Seven Up as a swallowing aid but I mix it with about 40% chilled water (similar to the quality you get from McDonalds !! lol )

regards

Mike

That more disabled people should feel their 'disability' to be more of just an inconvenience would be wonderful. The medical model of disability sees the condition or disorder of a person as the cause of their disability and the thing that must be cured or made better so that the person is able to take part more fully in society. In contrast the Social Model of Disability states that it is not the disorder which disables a person, but the structures and cultures of society which force those people to be excluded because they are constructed only to meet the needs and expectations of the majority. The most obvious example would be the lack of 'disabled access' to buildings. It is not someone's inability to walk up stairs that disables them, but the building itself. They would be perfecty able to access and negotiate a building if it was built with their needs in mind.

The same is true for Achalasia sufferers. An incident from last year comes to the front of my mind. I was in Stratford with my family. The weather was great and we found a pub with a beer garden which was very quiet. We chose a relatively secluded table and ordered some food. Obviously I had some carbonated water with me and usually, if we were inside, I'd be leaving the pub to go swallow outside. As we were in the beer garden I decided to just get up and swallow whenever I needed. As I did this I was noticed by a member of staff who came over and informed me that I could not drink my own drink on their grounds. I explained my condition fully, she either didn't understand or didn't believe me. So I asked to speak to the manager. Her line was that there was carbonated water for sale in the pub. I explained again that this was how I coped with my disability - the word 'disability' sorted it; good businesses are sometimes quite wary of breaking discrimination legislation. The point is that I would have been perfectly able to eat and enjoy a meal in the sun if I'd been considered and allowed by the systems in place to manage it in my way; I would not have been disabled. However, if they'd insisted on me not using my carbonated water, then I would have been completely disabled. I would not have been able to eat my food, or I could have tried and would have to deal with the consequences.

Sasha,. please accept my apologies for hijacking the thread (not intended) but must respond to Pokeys last posting.

I find it utterly amazing Pokey that you were able to stay within the confines of the garden at the Stratford pub to take your carbonated water in, in front of anyone. Let me say that in over forty years not once have I ever attempted that with my cold water in anyones presence who would have had a direct view of me. Not even at home, in front of my wife or children, not in my earlier days at home with my parents or brother have I ever done this. I applaud your utter strength of character to be able to do so,..it takes real guts, which I admit I could not compete with. I will pull no punches and say that I would be far too fearful that my nerves would get the better of me (for fear of my food sticking and having to vomit in public) in such a situation and that in itself would disrupt my normal ability to get my food down. As Ive always advocated, if you can relax things will always be so much easier,. to be put in that situation would wipe my relaxation away totally.

regards

Mike

Mike

The beer garden was really much quieter than going out onto the street. There weren’t many people in the garden and those who were there were at the other side. I can swallow using carbonated water in public as long as people aren’t too close. I always keep a good distance away and turn away from people so I can’t see them and so that they’re unlikely to notice me. I tend to focus on something nearby, like a big wall or a tree to make me feel more comfortable, I might even go over and face it in a bid to hide the surrounding world from my perception – otherwise I start to experience feelings similar to agoraphobia: I panic being out in the open while I swallow. I try to stay as relaxed as possible firstly to ensure that that I don’t panic and secondly to concentrate on relaxing my throat, as the less I try to produce a swallowing action with my throat and the more I rely on simply pouring the fizzy water down the easier and more comfortable the experience is.

I could not simply stand up in the middle of a beer garden and throw the water down. I would be totally overcome by panic and the agoraphobic feelings and probably end up in a bit of a state. As long as I feel that I’m not being watched or noticed by other people in the vicinity or as long as I can turn my back on them and pretend they won’t notice me, and they are a suitable distance away, I will usually be OK. It’s resulted from refusing to miss out on things like being able to go and eat in a beer garden with my wife and daughter on a nice day. It’s the same reasons I trained myself to cope with going to restaurants and nipping out to the car park several times during the visit, rain or shine. It was difficult to start with, but in the end it just becomes another of the many coping mechanisms I’ve established and come to rely on.

Hi Pokey,. The explanation you have just given I can relate to totally,.indeed all the mannerisms you have gone through, the turning away, the avoidance of stares,.I too have experienced but I believe my fearfulness of being discovered with this condition is proabably just a little higher than your own.,.otherwise you could swap us over and the casual reader wouldnt, I believe, be able to tell from our accounts, which one is addressing the room !

Perhaps you can also relate to a situation which recurs such as this. On social days out if I have to take someone with me in the car (such as my wife or a friend) and we stop to have a lunch break, make tea etc. I will keep my water flask in the boot of the car, but stand with my back to the tailgate while I take my water. In this environment I feel comfortable but I certainly couldnt sit in the car to do the same. No matter who I was with it certainly wouldnt be a possibility.

Mike

My boot is one of the things I focus on while swallowing sometimes, if we're eating in or around the car. I open the boot (hatchback) and hide behind it and pretend there's no one behind me.

Hello everybody!

Glad to hear that you're doing well enough to have a good debate. I'll join in at a later date. I just wanted to update you with whats happening.

I saw the consultant this week and I'm happy to say that things are moving forward. he informed me that I do need the hellers myotomy as the dialation alone is unlikely to give me any long term relief (my manometry report said that the pressure in my oesophagus is 33 where as normal pressure in a non sufferer is 5) Not good.

He wanted me to wait for the hellers but i refused as he could not tell me how soon. I stressed the state that I'm in and he therfore agreed to the dialation anyway as a temporary measure. Apparently some surgoens don't like to preform the hellers if a dialation has already taken place. I've no idea why. Does anyone else know? Anyway, i'm willing to take the risk. I'm therefore booked in mid july for a dialation- 3 weeks away.

My plan is therefore this: have the dialation, see how I am. Meanwhile, have the appointment with the surgeon and see how how long I have to wait for the hellers. If my symptoms have improved after the dialation, I will be happy to wait a while for the hellers. If not, and I'm still in this state, i'll enquire about paying private. Not something I can really afford but I will do anything to have relief from this.

The eating and drinking have not gone well recently although I'm still trying very hard.

How is everyone doing? What happened to Jean?

Sasha

p.s) I'll repsond to your comments asap. Just wanted to give you an update

Hello Everybody!

Just had to post to give you an update. I have very postive news

I am now a post operative hellers myotomy patient and have been discharged from hospital today.

Yes, I'm eating and drinking with no restriction and no vomiting. I can't believe it. Yes, I look like I've been shot in the stomach 6 times and am very swollen but it's been so worth it.

You're probably wondering how everything has moved so quickly so I'll fill you in:

I saw the surgeon early this week and he managed to fit me in for surgery the following day. Its all happened very quickly but not a minute too soon (if that makes sense)

Mostly though, i wanted to thank you all for your support as your input has been helpful in motivating me along. Thanks so much for everyone who has taken the time to speak to me. I really appreciate it.

sasha

xxxxx