Recent Achalasia diagnosis, what am I to expect?

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Hey guys, 

Ive just turned 23 and was recently diagnosed with Achalasia after suffering for almost a year with severe reflux and the sensation of food being stuck in my throat. It first started near enough around this time last year when I was drinking a fizzy drink and all of a sudden It felt like a had an air bubble trapped in my oesophagus that wouldn't pop or go us or down and I ended up throwing up all down myself in public. From that incident, the list of foods and drink that I was able to keep down dwendled to nothing (no exaggeration) and the GPs kept brushing me off with Antacids and anti sickness medication despite me expressing to them what my symptoms were.  I went from 13st (around 75-78kg) to currently 7st (47kg) and I'm currently in hospital, only receiving the diagnosis because of a pneumonia I've developed from me breathing in the reflux and it going into my lung. There are now talks of me having that final test before having the POEM surgery and then the POEM surgery in the next several weeks or so.

What I would like to know is what am I to expect after all the surgery in regards to pain, possibe pitfalls and eating wise? I know I should be thankful to be able to eat anything after the procedure from at the moment keeping doing very little,  but it's hard to swallow (no pun intended) this diagnosis after living 21 year never having an issue with food. Will I be able to, (obviously after full recovery)  eat virtually anything again? 

Thank you for taking your time to read my question, smile

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  • Posted

    Hi,

    Wow, that is story and a half... My heart goes out to you... I havent had surgery (yet) but can assure you, you are in the right place for sound heartfelt advice. Looks like You are about to turn a huge corner, and things are going to be much better for you! smile That I am sure! Sounds crazy, but maybe the fairly quick onset to your current status will be a blessing. Getting help whilst still young enough for your body to adapt and learn to deal with the new way of living! I will let the Post-Op folk advise re eating, but from what I have read, the first sensations of fluid/food flowing again will be remarkable.. Healthy vibes your way!smile N

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    • Posted

      Hey neil32387,

      How long have you been suffering with this? And have you had any of the other non evasive treatments or is your surgery your first piece of medical intervention? It has been an extremely stressful time as my family didn't believe me either until I was rushed into A&E with the damaged lung so I'm still trying to deal with all that anger towards them but I hope now I got the diagnosis, things will be on the up smile good luck with your surgery when it does happen!! smile

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    • Posted

      Hi again,

      I have had the condition for 15 years... POEM never existed then, and info on Heller Myotomy was limited; I just found ways to cope. However, in your case it appears you need some form of intervention quickly. You need to eat and stop the aspiration to your lungs! There are lots of post POEM folk on here and I am sure they will offer advice... I would recommend looking at both POEM and Hellers on youtube.. The POEM vids are very interesting!... Bottom line is that POEM is less invasive and can loosen larger vertical sections of the Oesophagus; but Hellers can involve a wrap to prevent acid reflux. For POEM PPI drugs are used to control acid..Reliance on PPIs seems to differ greatly; some folk need high doses, some learn to manage without them - I suppose through diet and eating habits (not eating after 7pm etc)...Of course These may be minor concerns for you as you fundamentally need to eat!smile ... Just for completeness and in case it helps in the interim I use High Strength Magnesium and VB, drink warm water, and try not to panic. I have a technique where I chew my food, raise my arms, swallow half way, breath in, then on swallowing again gently lower my arms. Bizarrely this usually only works standing up... I also take a Calcium Channel Blocker (Tildiem) daily, these help to dilate the blood vessels which in turn relaxes smooth muscle - they are by prescription only... lots of acceptance and Positive thoughts go a long way too.. I understand re your family that will take some deep acceptance, but once achieved that will help too! 

      Wishing you healthy karma!!smile thoughts are with you.. 

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    • Posted

      You know what is interesting, your eating technic though bizarre, I kind of understand as I sometimes find thatneating whilst standing up helped or if I am sitting down, I need to be sat at the table whilst leaning to the left (only issue was, only sometimes didn't these things work for me and the lack of consistent good results frustrating.

      You must have such strength to be so persistent with these changes, techniques and coping mechanisms. It's really amazing man!

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  • Posted

    Hi Rhi-Eva, 

    So sorry to hear of your recent diagnosis, but the good news is, that you are now properly diagnosed! I think you will be much happier after surgery. I had a Heller Myotomy done in 2012 and it has made a big difference. There will still be food & drink that bother you, but that horrible choking thing should go away, at least for the most part. I have twice had to have my esophagus stretched because it seems maybe scar tissue starts closing it up and the feeling of food getting stuck again happens. It took a year for me to be diagnosed. Having the surgery was a life saver... to me. 

    I would suggest though paying attention to your stomach and intestines over the next few years. Since I was first diagnosed with Achalasia, I have developed Gastroparesis and it seems to be moving into my intestines?? This has brought a whole new set of problems. Pay attention to your body and be pro active regarding your health! 

    One other thing, be prepared for people to be clueless about what Achalasia is and sadly the horrible chest pains don't stop.  Good luck and I wish you well!

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    • Posted

      Hey Sarahab05,

      Did you get have the oesophageal stretching pre or post surgery sorry? I'm so glad you've had a lot of improvement, but I'm so sorry you have Gastroparesis! Was this a secondary illness directly linked to the Achalasia? There has been suggestions that I may have Colitis, but my GP has been so poor, I'm definitely looking to get a second opinion about that. Also, I know everyone's different, but what food do you find you still have issues with? I kind of have a feeling that I can kiss the thought of enjoying bread goodbye, and also, if like me you experienced dramatic weight loss, how easy did you find it to gain weight post op?

      Thanks for replying and reading my story! I hope you can continue on your successful journey forward!! smile

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    • Posted

      Hello again, 

      I had the esophagus stretched before surgery as well as Botox. Both helped immensely, but were temporary fixes. I have had esophagus stretched twice since surgery as after time it seems to close up?? 

      As far as Gastroparesis, drs can't conclusively say why I have developed it, but I just feel like it's part of the whole digestive cycle. I have to honestly say that the Gastroparesis is harder to deal with than the Achalasia. 

      Truly the only foods that seem bother my Achalasia is broccoli, meats and bread. I have had no issue with weight loss at this point. My issue is more vitamin deficiency. I seem to tolerate plain potato chips and crackers really well so I find myself snacking on them a lot to curb my hunger.  

      I have done a lot of research on line which helps me feel more normal. Achalasia is an invisible disease that has no rhyme or reason and people don't understand. I find it frustrating. 

      I really, really wish there were support groups where us sufferers could meet in person. I think that would help!! 

      Good luck! Stay positive 👍🏼🙏🏼

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    • Posted

      Ahh okays, for you, how long was it before you had to get your oesophagus stretched post surgery?

      And I'm so sorry for this additional issue, it's like when you already have enough to deal with, another thing comes down.. *shake my head*

      That's crazy! Broccoli? I wonder why that is, maybe because it's so bitty🤔

      I also do well with plain food, this is my second day out of hospital from the pneumonia caused by the reflux, I had a soup(of course) at Zizis, and I had the smallest piece of bread and I had to tear it in to little pieces chew it on a thousand times  and it was exhausting so I'm going to continue to avoid it on the most part.

      I also agree! This site is so so helpful, but it would be good if there was one, also it would be good to know where everyone is based because I wonder if most people on here are UK based, and whether the treatment would be different else smile

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  • Posted

    Hello,

    You story sounds exactly the same as what happened to me, doctors would just brush it off as other issues - I was 8 years old when it started and it would always get put down to me being a child and it's a phase they all go through. it took nearly 2 years for me to get seen by a professional as I was massively underweight as at this point I couldn't eat or drink anything without throwing up.

    After I had my operation (esophagomyotomy) in which they removed the flap at the bottom of the oesophagus I was in hospital for around 3 weeks afterwards but I think this more also due to me being very weak and unable to walk. I was also fitted with a feeding tube for 2 months afterwards. 

    When it comes to actual pain I don't remember feeling too much it just felt like a constant sore throat for a while but it did heal very quickly. it was more uncomfortable than a pain so I wouldn't worry - just keep up on drinking your fluids after. Also I remember the first time I ate without anything coming back up, it was the greatest and strangest feeling as I had become to custom to being sick.

    The only thing now is since the operation I have NEVER been able to be sick, even if I feel like I could be sick there just isn't anything that will come up. as for foods I got told to keep away from spicy foods and alcohol but I do have both... sometimes I get some pain that can randomly come on, I have had several barium swallows but they aren't exactly sure the cause - however the best guess it's the pressure building up, to combat this I drink fizzy water which does help.

    Anyway I hope everything goes well for you.

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    • Posted

      Hey Spilf,

      Your story sounds horrendous! I can't imagine going through this at the age you did because I really have struggled trying to get help near enough 3 times the age you were and I was very convinced I would end up starving to death before any medical intervention sad.  

      The type of procedure you received I think if slightly different to the one the doctors have been discussing with me, I think they're going to just cut into the sides of the narrowing where as you had the entire flap removed? I hope my procedure will have as effective outcome you've had, 

      Thanks again! smile

      I'm so glad that you're able to live and full and normal life with little issues around food now, but that not being able to be sick one is strange. Do you feel like that's a problem?

      Your response was so helpful for me and I'm starting to get a clearer picture of what I'm looking to face in the very near future.

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    • Posted

      Yes I think my procedure was one of the most extreme ones as my achalasia seemed to be very bad, If I remember this right I was one of the youngest people to ever be diagnosed with it. I'm glad that you have now got the diagnoses for the issue - unfortunately it's quite an unknown medical issue so GP's generally aren't aware of it. 

      As for the not being able to be sick it's never really an issue, only if I end up getting very drunk and I feel like I need to be sick but I try and avoid this smile the only other thing is sometimes I feel as if my throat is a little tight but after drinking a good amount of fluid it usually eases off. I'm now 25 so I'm hoping it won't re-occur, especially after having the "flap" removed.

      If you ever have any more questions feel free to drop me a message!

      Good luck!

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    • Posted

      ahh ahh I get you, I'm glad that it sounds like the condition hasn't held you back really living a full life smile you did mention them saying to avoid spicy foods or alcohol but amid there any foods you find you can't/ struggle to eat at all? 

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    • Posted

      There really isn't much that I don't eat to be honest, and I now live in Vietnam so I do eat a lot of spicy foods but it doesn't seem to affect anything.

      The only things I do avoid is eating a lot of bread and cakes as I find the dough can make me feel a bit unwell.

      I do also avoid eating a lot of food to the point of being very full as I find this can cause me problems, I get tightness of the throat and sometimes I can get pains throughout my chest and back - it's not been confirmed but I'm sure this is due to pressure building up in my stomach.

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    • Posted

      Ah okays, I know everyone's different but just trying to build a picture of what my relationship with food will be, I hope I'm able to tolerate spicy foods again aswell, being of Jamaican heritage, bland food doesn't really exist 🤣 

      At the moment as I think I've said, I cut bread/ gluten products from early on into my struggle because, even though I didn't know why, if i tried to eat, let's say a burger or my guilty pleasure, a crisp sandwich, I would feel it up in my throat/chest till it would come back up. 

      Also with fruit, I've found fruit impossible from early on aswell, even watermelon which I thought shouldn't cause any issue as it's not really an acidic fruit.

      Do you have to take PPIs/antacids at all?

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    • Posted

      Hi Spilf,

      The whole not being able to throw  up anymore is horrible!! I work in the ED at a children's hospital and am in constant fear of contracting the flu. I keep a supply of Zofran on me at all times. 

      I have found with spicy foods and alcohol as long as I have them several hours before bedtime, I am good. We eat a lot of salsa around here and I have learned my lesson about eating it late. It burns coming back up when sleeping!! 

      Good luck with everything. 😃

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