I have achalasia

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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

    If you PM me I will give you the number where you can buy 6oz milk shake drinks that have 675 calories in each one. They are high in nutrients as well as calories. I didn't know what you meant when you said starve yourself. Is it you can't eat because it's too painful or that you feel you look to heavy? I'm trying to get a picture of what's going on. Most dilatations only last 2 to 4 years. You may need another. I've had 6 in past 15 years.

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    • Posted

      Hi DJ: I am a 58 year old female. I don't starve myself purposely, it happens when my esophagus muscles close. My problem is with both the upper and lower muscles. It starts with the upper muscle first. At the moment I am still able to eat almost anything I choose. I am just really frustrated with the immediate weight gain after the procedure. Both times I have starved for long periods of time waiting and waiting for doctors and tests. At the moment I am hovering at 200 lbs and just find it so hard to lose any of this weight. My normal weight is 134 lbs. It doesn't seem to matter what diet I follow, I just think as Colleen states below that my metabolism is so screwed up that it doesn't really matter what I do. The first time i starved i went down to 83 lbs, after not being able to keep anything down for 2 years. The second time i finally got back to 134, had the procedure and ballooned again. It's not a matter of self esteem or vanity. I just would like to get back to my normal weight and stay there. I now have a doctor in Calgary who knows his stuff but am afraid that when it happens again, is 200 lbs my normal weight now and am I going to gain another 200lbs.

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    • Posted

      First, I am so sorry you are having such a difficult time. Thank God you aren't starving. I'd rather be overweight and healthy with good nutrition than to be underweight and malnourished. I know that you want to loose some weight and I feel certain once you get your eating habits under control and what works best for you, you will loose the weight. Give it time and in the meanwhile stay far away from fast foods and maybe try eating Lean Cousine and other low fat high carb foods. I promise you that since you are taking the bull by the horns, you want gain much more weight. You seem strong and determined not to. I'm 58 as well and I can tell my metabolism has slowed down. I myself use to weigh 165lbs all the time with a 32 to 33 waist. Now I'm 183 and have a 36 waist line. I hate it. I'm determined to get back down to my ideal body weight. But it takes more effort since things have slowed down. Stay positive and focused. You're on the right track. I wish you good health and happiness hun!

      DJRN

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  • Posted

    You don't say or I didn't see if you are male or female? I'm either case, 80 something pounds is too low. You need to gain weight. If you PM me I'll give you a number to that product that has 675 Cal's in it.

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  • Posted

    Talk to your prefered doctor.    I think when we go through extreme weight loss, our bodies go through a change and once you start eating good again it builds up fat storage for the next "starvation" time.  That's why people like "the biggest losers" have a hard time maintaining their weight after the show even though they are eating healthy and doing excercises daily.  Give it a google.

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  • Posted

    There may be an issue of not being familiar with 'normal' eating in terms of speed, quantity and quality, as your condition has got you out of the habit one way or another?

    If you are managing to swallow normally or near normally now and are taking in sufficient nutrition that is an excellent achievement. Then you have to stay away from food where the texture might cause swallowing problems and adjust the quantity so that you stabilise around your ideal healthy weight. You might ask your doctor for advice on this, but they normally say that a mixed diet is best.

    You also have to come to terms with your body image and how it relates to your ideal healthy body weight.

    Long term it would be sensible to think about whether you are relaxed enough around food, since relaxation techniques can prolong the period for how long dilatations are effective.

    I hope this helps!

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    • Posted

      I see little correlation in how relaxing can determine how long a period a pneumatic dilatation would last. I know that stress and anxiety can play an important role as to how well our body functions, but a dilitation is going to last however long it happens to. I've never heard of stress playing a role in its outcome and longjectivity. It has more to do with how hypertensive One's LES is and how it was performed via pressure.

      DJ

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    • Posted

      It is reported experience from patient group meetings, and I do not know the medical mechanics in detail, but I am guessing that it is to do with reduced tension helping the relaxation of the muscles around the lower oespophageal sphincter valve.   Which is not inconsistent with what you have said above?
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    • Posted

      True Alan. To be honest I think that I read your post the wrong way. I hear what you are saying and do believe that "stressors" can indeed play a role in much of what happens to our body. Thank you!

      DJRN

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  • Posted

    Which type of Achalasia do you have? You've only had dilation so far? What are you eating habits, like when and how many times a day? Do you sleep properly supported?

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    • Posted

      Just curious.  Why your questions.  She seems well versed in her disease. She was asking if anyone had problems with weight after feeling better and if they had any suggestions.  She said she's only had dilations so far.  For a lot of achalasia patients this works wonders and last a long time.  We all don't want to be butchered and still have problems.  

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    • Posted

      Thank you for reminding me how I was butchered I had almost forgotten. If I think I can help someone and want to ask them a question then that's what I'll do. If the questions bothered her then she would have said something. Thanks for your kind words. They are much appreciated.

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    • Posted

      All of this is tough for everyone. We have to remember and respect where everyone's been and where they're going. Some things are better left unsaid.

      DJRN

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    • Posted

      I apologize if YOU read my question and comments as a negative word to you or you think my comment was a negative attack on you.  I truly was curious of your question.  I wanted to know what type of Achalasia does have an effect/affect on your weight.  Otherwise you wouldn't have asked the question. AND "kind words"  what does that mean.  I didn't say anything unkind to you.  I don't know you to say anything unkind to you. I am here like everyone else, looking for answers and hope.  I hope this clears up any misunderstanding...  PS, as they say you don't know what battles someone is fighting so your last two sarcastic line weren't necessary. But I hope it made you feel better to know that you completely misread someone you don't know then you attacked them for something that is not there. 

       

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    • Posted

      You told me that not everyone wants to be butchered like me so yes I take that as being attacked and very unkind. So you can keep pushing the blame on me , it really doesn't matter . I've been through just about every test and procedure there is for this disease and am about to do my final one so hopefully I can find a better butcher this time . I was never nasty to anyone on here and onlybtried to help people. If you were having a bad day and took something I said not how it was meant well, that's not my fault or problem. I'm sorry you have multiple issues with your health but so do I. I have to go to Sloan Kettering cancer center every 6 months to see if the tumor in my left lung has grown. So , your not the only person angry about their health. I'm not the only person you have had words with so , no one wants anyone here to suffer or be in pain we all have a common bond and I was hoping to learn and talk about then Nissen Fundoplication since that's next for me but I'll go elsewhere since I had the bad taste of asking a few questions of someone. Maybe we should find a hanging tree. Have fun in your group , I'm angry with don't need more stress for no reason. Feel well everyone. If anyone wants to ask me a question Doug has my email and can give it to you . Take care

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    • Posted

      Everyone needs to take a deep breath. There has been things said that were out of line and I undiscerning. Robert, I know you've been through a lot. I wouldn't want to be in your shoes at all. And using the word "butcher" wasn't right. We are all here for the same thing. That's to learn from each other and not insult or be insulted by anyone.

      DJRN

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