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How I deal with Achalasia

Posted , 18 users are following.

Guest
Guest

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?

2 likes, 43 replies

43 Replies

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  • AlanJM
    AlanJM

    Posted

    I was just re-reading the posts. Majid Hashemi, the surgeon at University College hospital in London, was saying that some of the studies do involve people as young as ten years old, so it is not especially age-related as a condition. And lots of people do have trouble getting a diagnosis, with sometimes inevitable confusion about whether people have bulimia etc.Mr Hashemi and a gastroenterologist Dr Rehan Haidry gave presentations at the meeting, and we thought about a dietician / nutritionist for a future occasion.

    On the diet issue, I imagine that the first criterion has to be food where the consistency allows reasonably good swallowing and does not create any trouble for you. I think that most of the nutrition gets absorbed into your body from your intestines further down the pipework than your stomach, so if you keep to a balanced diet you would probably be OK, but having a test for mineral / vitamin levels might be worth considering.

  • ellis_emmerson
    ellis_emmerson

    Posted

    Thanks for update from meeting. It's good to know what recent advice is..
  • S33kingH3lp
    S33kingH3lp Guest

    Posted

    Hi,

    My sister was suffering for Achalasia since April 2010. she under went for dialation once in October 2010. In November 2013 she under went Heller Myotomy procedure. But the chest pain which she was suffering before the surgery is still occuring. The intensity of pain is less but she still get those pains.

    Now after 5 months of that surgical process, she is experiencing a lot of issue. She had lost her hunger. If she eats/drinks something , she feels uneasy and feels like vomite. She is very weak and not eating anything.

    Is this any side effect of Heller Myotomy or something went wrong during the surgical process itself?

    I am very concerned about her health. Please suggest/help.

    Thanks.

    • AlanJM
      AlanJM S33kingH3lp

      Posted

      I think that your sister should consult the surgeon again, especially as she is so weak and not eating.   The GP may be able to help with this aspect if there is a delay in the appointment to see the surgeon.

      Is this something tht has happened recently, or has it been occurring ever since the surgery?  I do not think that it is all that likely that there was anything wrong with the surgery.   This condition is very much about nerves and how they affect the swallowing muscles.   So the surgeon may have to think about whether something further could be tried to try and gain better relief.

      If at all possible she should continue to drink, perhaps some high nutrition drinks.   The feeling of nausea may be caused by food not progressing into the stomach, but it would be important to investigate the cause before suggesting any solution.

  • mel36
    mel36 Guest

    Posted

    I had Hellers Myotoym last July and I am now 65. I have found as you have, eating slower than normal works. After the first 6 weeks I found that I am able to eat almost anything provided I have a drink with my food. I can eat crisps, chips. If I eat dry nuts they often stay in my throat until I take a drink. I eat take a sip of my drink eat again and take a drink. I have lots of gravy or sauce on or in my food. It does not matter what the liquid is so long as I drink at intervals through out the meal. 

    I have the occasional twing from the op. For some time ofter the op one should be careful about lifting anything really heavy.

    I suffered for 3.5 years and lost 2.5 stones and lost strength making work  tough. Hellers Myotoym has changed my life. To my mind it is the best way to go.

    I wish everyone the best of luck. 

  • mum_of_H
    mum_of_H Guest

    Posted

    Hi - My six year old daughter was diagnosed with achalasia after a long period of daily vomiting, chest pain, night pain etc. A few months ago she had the Heller's Myotomy and Nissan fundoplication. She has a few episodes of tummy pain now and then, but she is mostly back to normal re energy levels and ability to enjoy life. It has been a difficult, stressful and sad time to see our daughter go through this. The operation was a big step, but to see our daughter so much better, we believe it was worth it.

    I have noted the discussion on this forum about food. We find anything fatty like hot chips makes her feel queasy.

    Achalasia has been a dreadfully hard and sad mothering challenge, but take it one step at a time. We came to the understanding that the only option was surgery. Best wishes.

  • 1blindmice
    1blindmice Guest

    Posted

    I know your post was over a year ago, but I must ask.  After the surgery you still have pain and watch your diet.  So what exactly was the improvement from the surgery.  I see this with everyone else, did the surgery, best thing in the world, still working on diet, triggers, night pains.  I have them now without surgery.  I've had the dialation and the botox, (here in the US) and am aware of the Heller and POEM.  I am 45 and along with achalasia I also have dysphagia, so swallowing and regergitation will always be a problem, because there is nothing for the dysphagia except diet and triggers and blah, blah, blah.  I am just curious what people get from the surgery???  So please, from a "foodie" who can't live on baby food, what did you or anyone else who can answer, gain from the surgery.   Thank you to any information you or anyone else can add to this post. smile 
    • AlanJM
      AlanJM 1blindmice

      Posted

      The surgeon at our patient meeting said that surgery achieves a good result for 80%+ of patients. It would free up the lower oesophageal sphincter to allow food to pass into the stomach (often by gravity) but may or may not be effective against spasms. Avoiding tension will always be important, regardless.
    • Nae_Nae
      Nae_Nae 1blindmice

      Posted

      Hi I was diagnose with achalasia 5 years ago. I had the Heller's Myotomy and Nissan fundoplication almost 5 years agao. It was the best thing for me, but now I'm experience pains, spams and not able to eat again. I went to see my GI doctor and start ALL the test again. I went to see my surgoen because now I have paraesophageal hernia. Which they can't tell me which is the problem. It's very diffcut and I'm so glad theres other poeple out there that can understand what I deal with on a daily basis. I say yes I look ok on the outside but the side is not right. SO I had an EGD ,which I don't know what they did becuase when I woke up I was able to eat again. My GI doctor said they did not dilate my esophagus. I'm thinking that maybe the hernia was moved but in place. so for now no surgery for me until it bothers me again or if i'm not able to eat. I start to eat better, no meats except chicken and fish. no breads, flour tortillas (i'm mexican very hard for me) no french fries , no sodas (which trigger the spasms, no alcohol  and I started to walk. My surgoen said if I lose eight it maight help. I eat 4 small meals a day and I stop eating by 6 pm. I know they say achalasia patients are ALL different advice is, if you have the surgery, rememeber your'll never get to eat normal. keep the same regimens , eat small meals, chew your food right , stay away from the same foods that bother you before , I drink warm water . that seems to help. and take care of your self and try take to get an hernia. stay stree free .I'm from California 
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