I've been diagnosed with Achalasia

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reading through the discussions re Achalasia it mentions loss of weight if that is part of the symptoms why is it that I do not loose any weight I struggle with eating and the pain,  I puree my food or mash well. I'm constantly swollowing to keep my food down I also burp a lot, I do have an underactive thyroid which I've had for 20yrs so I constantly have to keep a check on my weight as I can put the lbs on very easy. you all say you've had  treatment to eleveate your symptoms, but how long does one wait....

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  • Posted

    Not everyone loses weight. Before my achalasia developed, I over-ate. Now, I am unable to over-eat. So I dropped two stone over the past 6 months. But if a person ate responsibly to begin with, they might not lose weight. In fact, it seems possible that a person with achalasia could gain weight, since it's easier to eat things like fried hamburger and much more difficult to eat raw fruits and vegetables. I don't think the weight loss is inherent to the condition- I think it is one effect it has on overweight people.
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  • Posted

    I wouldn't wait at all to alleviate symptoms! The treatment options are effective, and achalasia does not improve on it's own. In fact it worsens. The main reason I have waited to get a Heller Myotomy is simply that I wanted to find the best time in my schedule for taking time away from work. My achalasia has worsened over the 10 months that I have experienced it, though, and I'm so glad that I will have surgery soon because now I am really struggling much more than I was in the beginning!
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    • Posted

      thanks for your reply, for a condition that is rare, there are a lot of people who suffer with it. I have a follow up appointment in June so hopefully something might be done. I feel my consultant is a little dimissive with me and wonder is that because I am over 60. 

       

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    • Posted

      Something can be done! They might not reccomend surgery for you (I gather that surgery is less effective after age 40 or so because tissues get stiffer and are less resilient) but you will be able to get either balloon dilations (which are very well-recieved and recently recognized as on par with surgery) or botox injections (which are said to be short lastiing but who cares! I wish I had asked for one).  Relief is coming.
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  • Posted

    The weight loss happens when you can no longer eat more food than you burn off. I would not wait to do something. If you have been diagnosed, to my knowledge surgery is an only option. It is the best thing ever. After 60 days it is like I never had Achalasia. I eat most anything with no side effects.  I have gained about 3 pounds back of the 23 I lost, so far. 
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    • Posted

      When I see my consultant should I say about this proceedure? I worry that as I have other  medical conditions such as benign heart tumors which causes me TIA's,  hiatus hernia, osteoarthritis I've had replacement knee and shoulders done, so I read like a medical book,  I worry that they will say She's back again.... so I hate having to go to my GP until I can't cope.

      Francesca

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    • Posted

      Absolutely. If you have achalasia and are having swallowing difficulty and you have a hiatus hernia then they really need to do something. Obviously they have to think of any risk of any surgery but it seems like you have already been through the mill and this surgery is laprascopic and done in a couple of hours or so under GA and you will be allowed home the next day if all well. Its a liquid diet for two weeks and then a soft diet for two weeks and then a gentle normal diet for two weeks and its in that time you lose weight ;-) but dont be worried after all that is what your GP is there for. If you have an appointment with a consultant by all means say you have been told about this operation and ask if he/she will do it if not ask why and they ought to have a good reason. If you do not get any satisfaction you can always ask for a referral elsewhere. The only reason for not doing this surgery would be if you were at risk during the anaesthetic for some reason ie age, weight, infirmity or pre-existing conditions.
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  • Posted

    Hi

    IU presume you have had a barium swallow and also manometry tests to confirm the diagnosis of achalasia??

    Not everyone loses weight though you certainly do lose weight if you have a myotomy and fundoplication simply because you have to eat a liquid diet for a spell whilst everything heals.

    You say you burp a lot you may well have a hiatus hernia as this can be a symptom of that and of course can also cause swallowing problems as you describe. Achalasia is a rare condition and hiatus hernia is far more common.

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    • Posted

      Hi Graeme

      Yes I have been diagnosed with Achalasia by having an esophageal manometry I also have a Hiatus Hernia which masked my Achalasia for a year  I was also being treated for H pylori which gives you pain and nausea, it was only after struggling with pain that I demanded something to to done I was classed as routine for the scans which was done on my stomach. It will be 3 months past for my next follow up appointment,when I was prescribed Nifedipine tablets which is used for painful spasms in the esophagus.

      Francesca

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  • Posted

    Hi

    Good so the manometry tests have shown you have achalasia and you have a hiatus hernia. I was prescribed Nifedipine tablets but have to say I did not find them much use really. I used to suffer with really bad reflux at night and this was oesophageal reflux not gastric. Its important that your doc get you on something like esomeprazole or omeprazole to reduce acid.

    Try to eat as early in the eveing as possible and drink a lot of water not alcohol as that can make things worse. My rule was nothing to eat or srink after 8pm. Avoid the foods you find difficult to swallow, often bread and potatoes and rice and try to eat little and often. I`ve always been a fast eater and you really do have to slow down.

    But you need the surgery and the gold standards is a myotomy and a fundoplication done as an overnighter. I dont know where in Dorset you live but I live in Bristol and had my op last September at Southmead hoospital by Mr James Hewes. He is an excellent surgeon and the surgery has improved my life no end. I am not cured and never will be but I can eat and drink and never get any reflux. I also had a small hiatus hernia which they can fix during the surgery. In fact if you went into hospital for a hiatus hernia they would probably do a partial fundoplication ( ie make a new valve by folding the stomach).

    If you dont get any joy down in Dorset then ask for a referral to Mr Hughes in Bristol.

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    • Posted

      Thank you for your supportive words, I live near Poole, I do however have a heart problem I have benign tunors growing which caused my stroke  in 2003. and I take  warfarin, so I am classed as high risk. I would rather take that chance of an op than  having to cope with this pain and feeling so rough.
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  • Posted

    I had the nissan surgery, hernia repair and had achalasia so had the heller myotomy. Surgery took 6 hours. My lung was nicked. This was June 25 th  of this year. I have since fired my dr. I've lost over 30 pounds. I weigh 104. If I eat anything it goes directly through me. I am worse than I was before the surgery. I go to a large hospital next week. Praying for answers. I'm 43. I have a history of Sarcoidosis. Since 27 Yeats old. Anyone have any comments? Ticked off Christy
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  • Posted

    My husbands consultant was very clear. Hiatus Hernia and Achalasia cannot co-exist as one is not conducive with the other. A hernia would be a small portion of stomach in the oesophagus, that has slipped through a lax sphincter muscle. However, as you know, the muscle in Achalasia is tight and closes off! He suggested the 'hernia' being seen was actually the oesophagus becoming dilated and stretched as a result of food 'backing up' and waiting to drop into the stomach. As a result, antacids rarely seem to give relief
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