How I deal with Achalasia

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Hi,

I thought I'd share my experiences, they may be useful to someone.

I was diagnosed with Achalasia in 1997 when I was 30 and had the laparoscopic Heller Myotomy (keyhole surgery to relieve the muscle tension).

The operation wasn't as bad as I expected and the recovery went well.

The main point is that it relieved 90% of my symptoms, so for anyone given the opportunity ... TAKE IT. I've recovered the weight I lost and can go out for meals now without embarassing myself, my wife and people around me.

Since then I have been experimenting to find the best way of dealing with the remaining symptoms.

Discomfort when eating ..... for me 2 things help .... drink cold liquid before eating and eat carefully, consciously and a little slower than normal.

Pain in the night .... for me again 2 things help ..... take ibuprofen and drink really cold (ice cold if possible) water.

Now, there's one other point which, for me, is the biggest of all.

I try to avoid root vegetables and by far the worst of all ..... potato ..... and especially in the form of chips.

I can guarantee that if I eat chips, I will almost certainly have problems swallowing the meal. And I will, with absolute certainty, suffer in the night at some point in the few days (maybe up to 4) after eating.

The more potato I eat the more frequent the symptoms occur and last.

If I detox from potato then, after about a week I rarely get the symptoms.

Has anyone else found similar triggers with such a profound effects?

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  • Posted

    Hi Richard

    How can I contact the consutant? I really don't know his name as it not the same one that did the endoscopy to start with. It is a bitr like fishing in the datk and is scary!

    I am inclined to think that the dilation may help a bit - it should not make things worse. If it makes things just a little better I will go for I'll let you know how it goes.

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  • Posted

    Hi Sandra

    if you phone the hospital and ask for the upper gastroenterologists secretary, they should be able to tell you which consultant you are to see.

    Hi Patrice.. once i was diagnosed i was offered the op a couple of months later. Has your daughter been offered the op yet..

    If she is not able to tolerate fluids then she should get further advice.....again let the consultants secretary know if she deteriorates while she is waiting...im also a nurse so i know its sometimes a case of letting consultants know if things deteriorate.or keeping in touch with g.p. for worsening symptoms and rehydration advice.im sure theyd want to know if she cant tolerate anything.

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  • Posted

    Hi Again All,

    Ellis, I'm really pleased you've admitted :D that you're a nurse. It adds hugely to the trust in what you're saying!!!!

    Sandra, I'm sure the dilation will help and get you back on the road to normality. 1st July isn't too much longer to wait ..... I'm sure all will go well. Please let us know how you get on. And don't forget, while you're there ask about the op .... just in case it becomes an option for the future :-)

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  • Posted

    Hi Richard, Ellis and all

    Sorry I did not get on line before now - I am now 19 days after my dilation and my swallowing has improved quite a lot.

    I had it done under general anaesthetic - so was painless - but I had an extremely sore throat after it - they took biopsies and photos and then dilated the 'tight' bit.

    I am now managing small amounts of minced up meat - I can't manage much at a time - but so far so good! I wash everything down with sparkling water - I find that helps. Also lots of gaviscon if something feels stuck - which it is doing less often.

    I keep fancying different things to eat and so am experimenting with small amounts of things - and if they go down- fine - if they are difficult - I stop and will maybe try another time.

    Dilation was good for me - but I still have to watch what I try to eat and concentrate while eating- but I can vary my diet more now.

    Lets hope it continues to improve!

    Best wishes :lol:

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  • Posted

    Hey Sandra,

    Glad to hear all is progressing well .... small steps of course :-)

    I'm still keen to hear of experiences others have in dealing with the ongoing symptoms.

    Fizzy drink does seem to be a winner :ok:

    No takers yet on any other ways to avoid the symptoms .... maybe I'm a special case on the potato thing?

    Kind Regards ..... Richard

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  • Posted

    Hello all

    Thank you all for writing about your experiances with this condition.It took about 18 months to diagnose that I have joined the club as it were.

    It started in summer 2006 with what felt like very painfull contractions in my chest it seemed like my throat wanted touch my stomach :yikes:

    Out of desperation I drank some cold water and thankfully it helped and still is my way of dealing with that bit.Then came a lack of appetite and difficulty eating my food.

    After my referal came the 1st round of tests, tubes, barium swallows etc with no real conclusion exept Candida in my Oesophagus. :shock: why?Then came the next round and the conclusion was drawn Achalasia :wah:

    I have been offered the Hellers Myotomy.

    Using cold water to manage the spasams which have become less often but do seem to be triggerd by stressfull situations and being very patient with meals has enabled me to maintain my weight although eating socialy can be difficult some times.

    Avoiding any dryish meats is a must for me, chips can be difficult as can Lager or anything that fizzes up as it goes down the hatch :cry:but find boiled or mash potatoes as with most veges fine.If you are still with me many thanks, so pleased to have found you to share this with :D

    Robert

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  • Posted

    I had Hellers Myotomy on 1 July. at age 64. In consultation it was decide this was the best option. It did not go fully to plan so I spent 5 days in hospital. no big deal. If any of you have this procedure you will lose weight and feel very weak when you go home. In all I have lost 2stones and my strength. Life will not return to 100% normal. It will be a lot better. My wife and I have not been out for a meal in over a year for fear of being blocked and having to bring food up to get some relief. My surgeon has done several procedure's with good results. Although it is early days the out look is looking far better than the past.
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  • Posted

    Update. I haven't been on for a while. I had a bad time post op. Im 4 and a half years post op and going strong. Ive not needed any further interventions.

    I get alternate year gastroscopies which I hate, last one showed I still wasnt swallowing efficiently. im due one next month.

    My diet is not really restricted. I basically can eat what I want except rice and white bread. My weight is good cause I never stopped eating chocolate (it melts) and wine lol.

    With everything else life throws at me I sometimes forget I have achalasia, but coming back to this post reminds me of what I have been through and what could still happen in future, but life has been very good for a few years.

    Happy recovery Mel and to all.

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  • Posted

    Hi, Have anyone tried a liquidiser, if so does it make swallowing easier and help to keep the food down.. I saw my Dr yesterday and he is sending me for an urgent barium swallow. He thinks it could be dysmotility. I have lost 2 stone in weight due to this condition and afraid to eat anything solid.

    I also asked my Dr if I could have blood tests to see if I lack vitamins and he agreed I should have them done. I feel tired and weak so will be glad to have the tests next week.

    I would like to know what symptoms other people have with this.

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  • Posted

    How have you all gone about finding the best surgeon to perform a heller myotomy and is there a particular recommendation? Thanks

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  • Posted

    Hi,

    I've had Achalasia for five years, i am now sixteen. When i first started feeling the symptoms, i thought it had to do with something with my tonsillitis which was taken out in year 6. After nearly four and a half years of visits to the doctors, and basically everyone telling me it was a figment of my imagination or i was exaggerating the symptoms was i then diagnosed with achalasia. When i told the doctor numerous times i was regurgitating every single day after everything i ate or drank, they still didn't do anything about it, and one doctor actually had the nerve to laugh and ask me if i'm forcing it out on purpose, if i was bulimic. That annoyed me, i like food. Why would i want to bring it up?

    Well anyway, for the past years, the symptoms were gradually becoming more and more serious. First it was not being able to swallow certain foods, and vomiting on occasions, then it led to drinks and then became every single thing that i ate, no matter if it was hard or soft. Because i'm young it really it affected me, i didn't like eating in front of my friends because i had to push out of my chest out and use my hand to do this movement to help my food to move down my throat. It became so stressful and so very painful.

    There have been several times where i have had vomited during the night and ive woken up seeing it on my pillow, those ones were the worst. I couldn't even tell my parents because i was so embarrassed, i had to clean it up myself. I started getting stabbing pains across my back, my chest, jaw and ears, too many to count, i didn't know what was wrong with me, and when i typed it in google, so many searches came up about cancer, lung infections and what not which really freaked me out.

    I experienced i great deal of weight loss, everyone thought it was due to the holiday i went after 6 months i felt the symptoms. Being chubby to being skinny was a big deal for me, obviously i was glad, but i just went too skinny for my liking. Due to having food stuck in my throat, i had to stop eating alot of things, apples and crisps i used to love but that turned into an evil thing for me eat now, getting stuck in my throat on a daily basis. (i still can eat crisps without it getting lodge in my throat) Alot of the food caused white phlegm, which did go away after hellers myotomy in april but gradually came back a few months after, and i have been feeling the sharp pains again. I was't able to do alot of exercise as it caused me too wheeze alot from the things stuck in my throat, refusing to go in my stomach. Due to all of this, i wasn't able to laugh properly, i couldn't make the sound of laughs, or do it without properly losing breath and wheezing like i was 80 years old. After the operation, a month after, me and friends were joking around, and something funny happened which naturally led to me laughing, after i did, i realised i was making sounds and wasn't wheezing, i told my friends this as they recognized the same thing and informed me it may of been due to my throat being clear of everything.

    After a few weeks of my operation, i felt the difference. I could feel how easily my food went down and how big of an impact of the dysphagia was. But that feeling isn't as the same it is with people who don't have achalasia as my food still does get stuck sometimes although not as serious as before. There only has been a number of times where i have been sick, and saw how that it was very hard to bring it back up.

    I would like to know how everyone has maintained a good diet after their operation and if the still have some of their symptoms and what the are.

    Thank you x

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  • Posted

    Hi, it must be dreadful for you to deal with this at such a young age. I can't comment on your question because I am still waiting for an appointment for a Barium Swallow so haven't been diagnosed with anything yet.

    If you search this site there are other Achalasia sufferers who have had the operation and can answer your questions.

    Merryl

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  • Posted

    Elondon.i live in North East of England and there are good surgeons doing these ops so I didn't have to search.

    Vicky.wow you have been so brave.....cause this is a dreadful condition. My posts and recovery are in these pages.i am about four years post op. It took months post op and things got easier over months as the inflammation and tissues continued to heal. Eat gently still to allow for this..I still find some foods difficult, particularly crisps which cause pain for a few days, doesn't put me off eating them though. Lol. White Rice is the most difficult,as sometimes potatoes. I have water with me when I eat and if I'm out for eats I choose a bit more carefully,but nothing is off the menu if I'm careful..I stop eating when I've had too much water....

    I couldn't vomit for a good year, but don't know if sphincter muscle has slackened a bit over the years. I rarely vomit though...

    I keep my fingers crossed that I remain well,, I know I will never be as comfortable as non sufferers but I eat well....there is also more interventions if things deteriorate.i went straight to the big op, so know dilation is an option if needed.

    Good luck with rest of recovery.

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  • Posted

    I am adding a few points that came up at the Achalasia meeting last week.

    First, the decision about what procedure to do (eg dilatation, myotomy etc) needs to be carefully thought through after looking at the results of all the tests (ideally endoscopy, manometry and barium swallow), because that tends to result in an optimum result.

    Some people found drinking warm water, having a hot water bottle, or even having a banana help with the spasms.

    Then, a couple of things that have occurred to me: white bread is often a cause of trouble for our patients after an oesophagectomy, and some refer to how it tends to stick around the plug hole of the kitchen sink and think that it does the equivalent to our insides. Perhaps toast might be easier?

    Carbohydrates do convert into sugar and I am therefore wondering whether the extra fermentation creates colic, especially at night when there is not a vertical route for the excess gas to escape?

    Trying low glycemic index / load food or a low FODMAP diet might be worth considering?

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    • Posted

      I'm considering following the low FODMAP diet since I've heard some people with Achalasia claim to have had their symptoms reduced or reversed following this or similar diets.  Has anyone here had experience with this diet?  If so, could you post your experience?  Thank you!
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    • Posted

      There are some details on the website of the Oesophageal Patients Association under Resources - Dumping Syndrome.   Primarily they found it sometimes hepful for reducing fermentation of food in the gut, along with low GI index / load foods that do not create the same degree of insulin spikes.   If you keep in touch with the OPA Achalasia group, there is a meeting in London on 8 July for a discussion about diets (details under same website under Achalasia).   My instinct is that it is mostly texture and consistency of food that has most effect, but I am sure you will want to try anything that might make a difference.   It certainly won't do any harm, and people are very different from one another.
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