How I cope with Achalasia

January 7, 2003

I thought I'd share some of my tricks for dealing with my particular case of

Achalasia and also share about some of the aspects I experience. After all,

I know we are all different, but I hope some of this helps someone out

there. Firstly as background, I'm 46, female, had quick onset from 'normal'

to total inability to swallow anything within 10 months, and had a Hellers

Cardiomyotomy in 1976, so I have had the condition/disorder for 27 years

now. I've learned to live with it and adapt my life around my peculiarity

successfully, while still dealing with the condition on a daily basis.

Dealing with REFLUX - I have an immediate mouthful/drink of water (I carry a

bottle in my bag at all times) and then start sucking/chewing on a Gaviscon

tablet. Mylanta has never done anything for me, I need the stronger

Gaviscon, although it doesn't work all the time either. Sometimes I need

some pain killers and while they are kicking in, I have as hot a liquid as I

can swallow and I swallow it as slowly and constantly as possible (really

little sips) and also sometimes have to have a hot water bottle on my chest

to help with the pain. Sometimes it comes back again soon, and I've now

found that I have overeaten or had something which stirs up the acid in my

stomach, like onions. I now don't eat onions in anything at all (a

sacrifice on my part but a worthwhile one) and I don't eat large meals.

That isn't worth it either.

Dealing with SPASMS - I used to think the reflux was the same as spasms, but

in recent years I worked out they are different things. I used to wonder

why some were so hard to move! Sometimes the drink of water heads off the

pain, but that is usually just a reflux pain which onsets suddenly and

strongly, fooling me into believing it is a spasm. I always need pain

killers for this and while they are kicking in, I have the hot liquid as I

have mentioned before and also the hot water bottle - sometimes it has taken

40 minutes before everything relaxes or begins to. When the pain is very

strong (fortunately it is even more rare than it used to be, meaning I

haven't had a super bad one or even a bad one for over a year now) it

radiates into my temples and sends me crazy. I really am irrational and

can't think of anything or do anything without being panic stricken and

beside myself with the pain. My family are very supportive during these

times, but are helpless (as you know) to help in anyway except running

around reheating the hot water bottle or boiling the kettle again. I am

always extremely exhausted after this and usually like down and go to sleep.

I also used to find when I was having them often, that they came in cycles.

I would have them on and off for 2 or 3 weeks and then be free of them for a

few months and I never could work out what the trigger factors were. I

think now though that having cut down on food intake and cutting out acid

foods, I've managed to ward off the events.

CLOTHING - another helpful thing I found was that I don't wear things with

waist's in them, or if I do, I wear them very loose so that they only just

sit on my waist enough to stop them from falling down! I make my own

clothes a lot so it is easy to make them to fit, or not fit as the case

would be. My skirts are loose at the waist and sit on the hips nicely and I

wear tops which don't tuck in so they cover the waist. The same goes for

pants / trousers whatever you American's call them and shorts.

What can I eat? I can eat virtually anything now, but every mouthful must

be followed by a mouthful of liquid or it just sits in my oesophagus.

Having a second mouthful without liquid will bring absolutely intense

incredible pain and totally blockage with the excruciating pain. Having

liquid after this one increases the pain until the blockage is moved. I

don't 'forget' to drink very often but if I do, oh boy. It is so absolutely

incredible I shudder thinking about it. Things like Chinese which often has

soft or liquid with the meal I don't always have to have it after EVERY

mouthful, just when I can feel a build up happening.

How many times a day do I eat? About 5 or 6 times a day, small meals so I

don't overfill my stomach, but by the end of the day, I have a reasonably

sized meal for a 'normal' person. Always the liquid after every mouthful.

I also don't eat large meals because my sphincter is totally opened (I had

the Heller cardiomyotomy in 1976) so having a full stomach leads to overflow

and reflux, plus any bending or pressure on my stomach pushes its contents

straight up the oesophagus. See my comment above on clothing.

Can I have a full meal? Yes, but the liquid also takes up some room so the

meals are smaller. I learned a long time ago to not bend over within 1/2

hour of eating (or drinking)

How often do I visit the Dr? Only when something goes wrong, and I haven't

seen a doctor about my achalasia for several years, since I had a narrowing

from scar tissue and sought help. I had a dilatation and it made everything

good again.

Do I have tests done on a routine bases? No, but I've often thought I

should have a gastroscopy regularly to avoid having anything go wrong like

cancer forming. I know I have a much greater chance of that happening than

'normal' people. However, by having liquid after every meal, I don't have

any food stuck in my oesophagus for any length of time, so this also cuts

down the risk to cancer or ulcers or anything else forming from stuck food.

What tests have I had done in the past.

Barium Meal X-ray (for final diagnosis in 1976, although I was blessed in

that the 2nd doctor I went to knew what was wrong straight away (ain't that

just wonderful? I had a torrid time before that though... That's another

story entirely which a lot of you are living right now. " All in my mind "

etc. etc.)

Barium Meal Video! I had scar tissue build up about 16 years after my

Hellers which caused a narrowing affect, so the video allowed them to see

what was happening. I got to see it afterwards too! What a thrill to see

how your oesophagus just doesn't work! I had a marshmallow (imagine how

that got through - NOT) and then watched the barium swallow put pressure on

it until it all went flowing into my stomach. That was the biggest buzz

I've ever had from this condition!

Gastroscopy. Had 2 failed ones in that my gagging reflux would not allow

the incompetent doctor to get the thing down so he deduced it was all in my

mind, and I shouldn't get married (6 months out from my wedding). Had

another 2 since, one for checking on the scar tissue and another which did a

dilatation which worked wonders, breaking the scar tissue and giving me

better flow of food etc.

Manometry, or failed manometry. I would never attempt a manometry again

unless I would die otherwise. I had a nervous collapse after they attempted

to do one on me about 10 years ago, straight after the exhilarating Barium

meal video. My body has a strong gagging reflex which did not want anything

going down my throat! My body went into shock and it would not work. The

nervous system shut down. I was incapable to doing anything for 3 days and

had nightmares! NEVER again! It wasn't going to tell me anything anyway,

'they' just wanted to 'make sure' I had Achalasia - after I'd already had

the operation for it 16 years prior!!!!! And the Doctor was supposed to be

a specialist in his field. He told me I had overreacted (can you tell your

body to shut down its nervous system???) and that he could perform a

manometry on himself! I felt like telling him to do it just for me! But

instead, I did my usual - put up the shutters on someone who just did not

understand, and didn't bother trying to waste my breath telling someone 'in

the know' that he didn't actually know anything about achalasia. I won't

see him again.

Am I on any Medications? Only Losec once a day for the reflux. And it has

calmed things down to the point where 3 or so years later, I don't have much

reflux now, but it is also combined with my cutting down on meal sizes and

not eating acidy foods.

I hope this helps someone in some way. I was so glad I found this group a

few months ago, and now I find after all these years of being on my own and

feeling bad about myself and my condition, I find I'm actually one of the

better people compared to some of you. I wish I could 'clone' my condition

and give you all the relief you so richly deserve. But, I do live with my

condition and have just managed my life to fit it, and I'm still very

grateful that I'm a part of this community. Bless you all!

Lynette in Australia

January 8, 2003

Lynn,

This is a great list. I found YEARS ago that I could not wear anything

tight. I buy jeans at least one size too big. Forget those little

polyester hip hugger things too, they hit me right at the wrong place.

JC