Tips for life with achalasia

Posted , 9 users are following.

Hi. I'm new here, and I'm sure I could find this info by browsing through a ton of other discussions, but who has time for that? smile I'm currently dealing with achalasia, or at least that's what my doctor suspects. I'm waiting for test results to come back to let me know for sure. As you all know, it's pretty terrible trying to get through the day with these symptoms. And my symptoms seem to be getting worse, with more frequent spasms, more difficulty swallowing, more late night regurgitation episodes, and it's starting to get pretty painful to swallow anything (until a week ago I'd had no pain, just discomfort). I've been on a diet of mostly smoothies and yogurt the past couple weeks, but I'm starting to have trouble even getting those down. I've lost about 15 pounds in just the past month. Now my biggest problem is that the specialist I'll have to see in order to treat this can't see me until June 20, and then who knows how long after that first meeting it'll be before anything is actually done? It's really starting to break me down. It's triggering my depression pretty hard, and it's effecting my performance at work because I have no energy. Can anyone out there please give me some pointers on how to make these next few weeks more bearable? Thanks so much.

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31 Replies

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  • Posted

    Hi Stephen,

    It does sound like you are in the right place... However, at this stage it is best not to assume anything, and just try to relax yourself. If I was to go back there, thats what I would try heartedly to do. To help- High strength Magnesium and V B really helped me, plus massage, meditation and even acupuncture. Watching fave films, go to fave place, do some photography or whatever has relaxed you in the past. Try and find some balance somehow. Meanwhile the docs can do their thing and then you can make a decision based on your own balanced feelings and medical advise...

    Plus loads of advice on here re helping getting food down in the interim. Warm water and banana are a go to for me when stresses are high, with deep breaths and Not too much thought..smile

    Wishing you healthy and relaxed karma.

    N

  • Posted

    Hiya Stephen. When i first had achalsia when i was 12 years old, i couldn't drink anything at all without throwing it back up so i can sympathise.

    When i was diagnosed following tests i was immediately admitted to another hospital (as my local one didn't have a surgeon who could perform the op), tube fed to build up some weight, and then operated on.

    I'd iamgine if you cannot keep fluids down as well as food that your case would also be urgent. Fingers croosed for you.

  • Posted

    Try googling Oesophageal Patients Association  / The Oesophagus / Achalasia and download 'A Patient's Guide to Achalasia' for a starting point.

    ?You may need some energy drinks from your doctor, as you are right that not keeping up your nutrition levels can lead to fatigue.

    ?I would also try some relaxation techniques / complementary therapy before the appointment just in case this can help a bit.

     

    • Posted

      Alan, you should post the address to this guideline of yours.

      DJRN

  • Posted

    Sorry you are having such a tough time. I highly recommend VHC (Very High Calorie) in the meanwhile. They are French vanilla and chocolate milk shakes. Each 6oz container has 675 calories and they taste great. ESP if you put them in the freezer a few min. I don't think this site will allow me to post their phone number for whatever reasons and will delete the entire msg. Click on the little gray envelope to the right of screen and prvt msg me. I will give you their number. You can't purchase these anywhere because of the high caloric volume. They are about $32.00 for a case of 34 of them. They are full of protein and vitamins etc. Made by Carnation. I promise you will love them and they will replenish your body instead of big meals. I hope this is an option you'll take.

    DJRN

  • Posted

    Stephen , before doing anything I would wait for a correct diagnosis. There are three types of Achalasia, I have type 3. There are very specific tests to determine if you even have it. You could have jackhammer esophagus or a dozen other issues. Not trying to break chops . Try eating soft non acidic foods and sleep at least at a 35 degrees at night. Don't eat or drink anything less than 4 hours before bedtime. Try to make lunch your dinner. Eat your big meal at lunch and something light at dinner. Most important, do a lot of research on the gastro doctor you are trusting your esophagus to. Very few know how to diagnose Achalasia and how to treat it. Took me 7 years to find the right doctor. I wish you luck, let me know how you do in 3 weeks. Take care

    • Posted

      I just caught the tail end to this post but I agree with everything Robert said. Folllow his advice. It's spot on. Just make certain that they do a Manometry test on you and of course a barium swallow if they haven't already. A manometry test is the most accurate, even over that of an EUG to diagnose Alchalasia and what type you have. There's even a chance that you have pseudo Alchalasia. The list is endless. Just do your homework and get more than one opinion.

      DJRN

    • Posted

      Hey Doug, I thought we were done with censorship in this country? Guess not !
  • Posted

    Hi everyone. Thanks for the tips. Sorry it's taken me so long to come back around and check out what's been said. So far I'm just trying to take it easy and experimenting to see what I can get down. I'm mostly still eating yogurt, and drinking smoothies and these Boost drinks. Sometimes things go down relatively easily, sometimes not. I've even tried eating some real food. Pizza and pasta went down without too much trouble, but everything else I tried was pretty rough. 

    As I mentioned in response to a private message I received, I'm having a hard time connecting it to my emotional state. I did lose my job a couple months ago, but I've not been very stressed out by that since I wanted to leave there anyway and was quickly hired elsewhere. Whenever I'm not at work I'm just relaxing with tv, music, or a book, but I'll still have issues then even if I've not tried to eat or drink. I have been fighting with acid reflux for a couple years, which has me wondering if this might more likely be hypertensive LES. But we'll find out.....eventually.... 

    As for tests, I've been through all of them I'm aware of. Have had a couple of endoscopies, did the barium swallow about 2 months ago, and then did the metronomy a couple weeks ago, for which I've still not received any word on the results.

    My question now is, what treatments have you all gone through and what kinds of success have you had? Are you able to get back to at least a somewhat normal life, eating pretty much as normal? 

    • Posted

      You may want to call your GI Dr. and get your manometry results. That will give you a definitive diagnosis. There is no better tool to do so. I would be calling till I got a reply. But, a barium should suggest Alchalasia as well.

      DJRN

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