I have achalasia

Posted , 7 users are following.

I was diagnosed after 2 years of starving and living on tea laced with sugar and cream. My weight was never an issue as I had weighed 134 pounds for most of my life. After starving for 2 years I was down to 85 lbs. I finally found a doctor in Toronto who didn't want to cut me open. He performed a pneumatiic dilatation on me. That procedure lasted for about 5 years. I had moved to Alberta in the middle of this time and when I started to starve again the doctors here told me it was all in my head and proceeded to put me through all the testing again. I finally found a doctor who knew what I was talking about and who performed another pneumatic dilatation. My problem is the weight gain and the horrible time I have with losing any weight whatsoever. The only time I am able to lose any weight seems to be once I completely cannot eat anymore. On the upside, this procedure leaves no scars and can be done as outpatient day surgery. I am horrified by my body now as it doesn't seem to matter what I eat after the procedure I just balloon up to 200 lbs overnight. I try to eat healthy all the time but seem to just keep gaining instead of losing any weight. I find drinking milk keeps the spasms at bay and if that doesn't work chocolate boost will appease them right away. Is there a strict diet that anyone knows of that can keep me healthy and help me get back to my original skinny self

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  • Posted

    I know exactly what you are going through! I lost 40+ pounds before my POEM procedure. I have gained back extreme weight! No healthy eating plan and exercise helps me. I think our metabolism is so messed up that we just can't get the weight off.

    I hope you can find a solution. God bless!

    • Posted

      Thank you Colleen:

      You seem to understand exactly where I am coming from.

    • Posted

      I was 57 yo when my situation got serious. I couldn't keep anything down from Jan 2016 until surgery on July 29, 2016.

      I had stage 4 Achalasia. Even now most foods get stuck but eventually go down but with pain. I only eat healthy, unprocessed foods. Very little meat, no chicken & very little fish. Mostly fruit, cooked veggies & beans, yogurt.

      Good luck my dear. I never had a weight problem before surgery & starving for 7 mo.

    • Posted

      I didn't know there was a stage 4 Alchalasia. My Dr. told me it's divided in 3 different levels.

      DJRN

    • Posted

      Your right Doug. It's type 1,2 or 3 . It's not cancer where they Class it in stages.

    • Posted

      I just meant that I had never heard of type 4. But, that's not to say there isn't one.

      DJRN

    • Posted

      Maybe but I've never read or heard any doctor say anything like Stage any number. Like you said ,

      Wanna laugh? I sent a message to the first doctor I went to for the Achalasia and she told me it was all in my head and I needed to come in 3 times a week so she could train me how to swallow food differently because the way I was doing it was wrong. So I wrote thank you so much for not knowing anything about your job and had you diagnosed me correctly maybe I wouldn't be in the spot Iam now. I said I hope sincerely that you have learned about the disease Achalasia because that's the one you missed !!!! Never heard back. Didn't really expect to

    • Posted

      That is too funny. She wanted you to. come in so she could bill your insurance company or SS. Teach you how to swallow. I'm sitting here LMAO.

      DJRN

    • Posted

      Hi Robert:

      Maybe Canadian doctors are new to this but no one has ever told me what type of achalasia I have. They just said I have it.

      I eat small amounts of healthy foods 5 or 6 times a day after a doctor strongly recommended that is the only way to boost my metabolism back to working properly. This was 2 years ago and although i follow along nothing seems to happen.

      I am about to give diabetic Boost 5 times a day instead of food a try to see if this can work at at least starting to loose some of this weight.

      And yes I do sleep with a wedge with a pillow on top of that. Actually have 2 of them in case I have a rough night and am tossing and turning a lot trying to ease the pain.

    • Posted

      The first doctor I saw also told me it was all in my head too. Several doctors after her also said the same thing. But she gave me a script for valium and antidepressants and told me to go home, take the meds and stop coming in as I was wasting her time!!!!

    • Posted

      It's very good to eat 3 or 4 small meals than 2 heavy ones.

    • Posted

      Are you kidding me? It's truly amazing what doctors get away with and how incompetent some of them really are. My brother tells me all the time that when I walk into a new doctors office I have no idea where he or she finished in their class and lately it seems like I'm getting all the ones that finished dead last. It would be really funny if it wasn't so sad.

    • Posted

      You seem to be doing everything right. There are three types of Achalasia I have type 3. There are so many things doctors can try before surgery but each has its own plus and minus scores. I had POEM and that made my condition worse so I then had this new surgical procedure done and I'm even more worse than before and each doctor claimed they would fix me! Now I have one surgical option left a Nissen Fundoplication and with Achalasia patients it's a very difficult surgery to get right. So, I'm not rushing into this one. We'll see what happens.

      Maybe the boost will help? I never tried it . I've lost weight. I was 224 and now down to 194 . If I could lose another 10 I'd be happy . I hope you find an answer

    • Posted

      You are correct.  Just 3 stages and then a different form called variant achalasia.  But no 4. 

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