Achalasia

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I am a 44 year old female from Lincolnshire. I was experiencing symptoms of Achalasia for approx 7 years. I am sure it started after a stressful period in my life. Also I believe it may be hereditary as my Mum died of Oesophagal Cancer, after talking to many family members and friends of family my Mum had swallowing problems for years but was only ever treated for GERD. I was the same, Doctors kept saying it was acid reflux and heartburn and stress making my food get stuck I even think the doctors thought it was all my head because of what happened to my Mum. Anyway after finally persisting that something had to be done I had Barium Swallow, Gastroscopy and Manometry which confirmed Achalasia. I had the Heller's Myotomy operation a week ago and am now on blended foods which is hard as I love my food. Just trying to keep positive and look forward to hopefully being able to go out to restaurants for meals as this is something I have not done for ages because of the fear of having to leg it to the bathroom to regurgitate food.

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  • Posted

    Hi Noggins,

    I was diagnosed with Achalasia last December at the age of 25.

    Like you I was misdiagnosed for a long time and my GP told me he thought it was all in my head and that worrying about my swallowing problem was making it worse! :roll:

    I was so annoyed because I knew there was something wrong with me but the specialist's kept telling me there was nothing wrong and they couldn't find anything, but I knew I was getting worse. Altogether I had and Gastroscopy, ENT Check, An Ultra Sound that didn't pick it up it was the Baruim Swallow in November that showed it up.

    Early December I went to see the specialist and FINALLY got a diagnosis after being told all that time there was nothing wrong, and told I would need a Hellers Myotomy.

    Early December I went for an Menometry and PH study. At this point I haven't kept solid food down for over a month! I finally had the Operation 3rd February this year after a long battle and set backs. Its was defo the best decision Ive ever made it gave me my life back but now 8 months on Im struggling to swallow again sad

    Its nice to hear off someone who understands what Ive been going through, Ive had a very supportive Husband and Family but they didn't full understand what it was like for me all them months of regurgitating food and liquid all the time. For a long time I wouldn't eat in front of people or go out for a meal and still conscience about it now.

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    • Posted

      did it ever get better? a lot of you posted over a year ago it's saying... I am currently dealing with similar symptoms but have not been diagnosed for achalasia yet, I have been treated like an anorexic person and been told by many doctors that it's all in my head, I am finally in a hospital where a gastro doctor is looking for what is causing all this, I have had many endoscopys nothing was seen,had a barium in the past and they picked up a abnormal contraction, I could not complete the full barium as i felt sick and the texture of the barium was too thick for me, I am 18 years old and I have been struggling with this for what I believe to be 11 or 12 years, for the first 7 years I struggled with just really thick syliva then 4 years ago  started having difficulties swallowing, lost weight, it went away, and I could swallow again. it then always was a tiny bit difficult but wasn't that bad and only would have acid one night every 6 months or 3 months. those nights I'd be spitting up crazy amount of thick clear syliva... I never knew what the problems were back then and didn't pay any attention to it at all. then last year I started feeling gagging sick all the time, everything that went down I was wanting to vomit back up, I never could vomit though, my throat felt weird and too weak to vomit, I rarely vomit but I get the feelings as if I need to at times... not all the time but I have constant reflux and breathing problems with really difficult swallowing probz, and have felt tight in the chest and the esophageal area, and also at times feel like I am having spasms and feel like I am having a heart attack, my heart goes really fast when these episodes occur and I normally constantly have a very fast heart rate. as I was writing this the doctor just walked in and told me that the manometry test is tomorrow, I am quite worried, I can hardly swallow water now, I am 18, very tall but so frighteningly skinny, I fear for my life, I am now 43 kilos and still dropping everyday and have been for a year, last year and february I was at my highest weight I have ever been and that was 73 kilos. so over the course of one year this sickness has taken everything from me, I hardly do anything now, no excercise hardly, pretty much nothing, and for years docs have sent me away thinking its mental or other things... but no, now it's come to this point where finally i am in a hospital and this doc is getting things sorted for me, he actually wants to find the problem. finally someone who actually cares and is curious and not ruling me out as a cleche teen with severe anorexia, I am sure many of you out there have experienced the same, I haven't been diagnosed with this sickness but I am almost entirely sure in my heart and very soul that this Achalasia is the problem I am dealing with, I am just hoping once they find the problem that they can fix me for good, but I keep hearing of unsuccessful stories and probz after surgerys so it is concerning, I don't want this illness all of my life, I cannot stand it dwelling underneath my skin, it makes me sick and NONE of us should have to deal with this, NONE of us! and when I hear about fathers that cannot be the role model that they truly desire to be for their kids but can't because they are sick all the time... it saddens me, I want us all to get better and I AM PRAYING! THAT ALL WORKS OUT GOOD! FOR EVERY! SINGLE! ONE! OF! US! I shall pray for you all tonight and myself, I have suffered for years and so have all of you and I thought my problem was rare, I thought i was the only guy in the whole world that had this problem... but no, it's rare but still thousands suffer with it. I hope... I can only hope that I can be cured and healed one hundred percent once treatments or surgerys are done.
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  • Posted

    It is now nearly five months since my op and i am enjoying eating everything. I have been out several times to restaurants with no problems really feel like part of the human race again. I do have to watch myself sometimes as I tend to eat fast which is not a good idea. I haven't has any problems but have felt food being a bit sluggish going down if i gobble my food to quick. Still seeing consultant for follow ups, he is happy with results so far. fingers crossed it lasts.
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  • Posted

    Hi Noggins. I also have Achalasia and live in Lincolnshire. Did Mr Barlow do your surgery? I just wondered if your symptoms have returnef? I had Heller Myotomy in March but have to go for another dilation next week. i have terrible chest pain mostly at night and real difficulty swallowing. I hope you are still having positiveresults.
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  • Posted

    Hi Clarky. I had my op done by Mr Tilston at Grimsby Hosp. I am still doing well. Still have to be careful with really dry food , I take Omeprazole every day to keep chest pain at bay, works most of time , also have bottle of Gaviscon Advance at side of bed and have slug of that if needed. I used to prop bed head up with books to raise my top end this helped with reflux and chest pain. Find stress brings it on sometimes, also try milk or plain biscuit as I find eating eases pain. Hope your dilation works, I've read that they can do Heller's Myotomy again if not successful. I know how frustrating it is not being able to swallow. I don't take for granted that I am cured forever.
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  • Posted

    thanks for reply. Had dilation last week - really painful for 4 days afterwards but have now had a couple of nights pain free so fingers crossed! Swallowing no different but have been told this won't improve. Good luck.
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  • Posted

    So great to hear some success stories. Have had Achalasia for 3 years and am having the Hellers Myotomy in 3 days. Really hopefully it is going to work.
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    • Posted

      did it ever get better? I am currently dealing with similar symptoms but have not been diagnosed for achalasia yet, I have been treated like an anorexic person and been told by many doctors that it's all in my head, I am finally in a hospital where a gastro doctor is looking for what is causing all this, I have had many endoscopys nothing was seen,had a barium in the past and they picked up a abnormal contraction, I could not complete the full barium as i felt sick and the texture of the barium was too thick for me, I am 18 years old and I have been struggling with this for what I believe to be 11 or 12 years, for the first 7 years I struggled with just really thick syliva then 4 years ago  started having difficulties swallowing, lost weight, it went away, and I could swallow again. it then always was a tiny bit difficult but wasn't that bad and only would have acid one night every 6 months or 3 months. those nights I'd be spitting up crazy amount of thick clear syliva... I never knew what the problems were back then and didn't pay any attention to it at all. then last year I started feeling gagging sick all the time, everything that went down I was wanting to vomit back up, I never could vomit though, my throat felt weird and too weak to vomit, I rarely vomit but I get the feelings as if I need to at times... not all the time but I have constant reflux and breathing problems with really difficult swallowing probz, and have felt tight in the chest and the esophageal area, and also at times feel like I am having spasms and feel like I am having a heart attack, my heart goes really fast when these episodes occur and I normally constantly have a very fast heart rate. as I was writing this the doctor just walked in and told me that the manometry test is tomorrow, I am quite worried, I can hardly swallow water now, I am 18, very tall but so frighteningly skinny, I fear for my life, I am now 43 kilos and still dropping everyday and have been for a year, last year and february I was at my highest weight I have ever been and that was 73 kilos. so over the course of one year this sickness has taken everything from me, I hardly do anything now, no excercise hardly, pretty much nothing, and for years docs have sent me away thinking its mental or other things... but no, now it's come to this point where finally i am in a hospital and this doc is getting things sorted for me, he actually wants to find the problem. finally someone who actually cares and is curious and not ruling me out as a cleche teen with severe anorexia, I am sure many of you out there have experienced the same, I haven't been diagnosed with this sickness but I am almost entirely sure in my heart and very soul that this Achalasia is the problem I am dealing with, I am just hoping once they find the problem that they can fix me for good, but I keep hearing of unsuccessful stories and probz after surgerys so it is concerning, I don't want this illness all of my life, I cannot stand it dwelling underneath my skin, it makes me sick and NONE of us should have to deal with this, NONE of us! and when I hear about fathers that cannot be the role model that they truly desire to be for their kids but can't because they are sick all the time... it saddens me, I want us all to get better and I AM PRAYING! THAT ALL WORKS OUT GOOD! FOR EVERY! SINGLE! ONE! OF! US! I shall pray for you all tonight and myself, I have suffered for years and so have all of you and I thought my problem was rare, I thought i was the only guy in the whole world that had this problem... but no, it's rare but still thousands suffer with it. I hope... I can only hope that I can be cured and healed one hundred percent once treatments or surgerys are done.
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    • Posted

      I'm fine now. Op was brilliant. I was told to avoid the balloon dilation thing and have the op. Haven't looked back. Still need water to be able to swallow but it's not a bother!

      Feels horrendous at the time and I know what u r going through. Try not to read all the negative stories. That's the problem with the internet, it tends to only be people for whom it's failed write on these things. The vast majority it works :-)

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  • Posted

    Hi Noggins

    I was diagnosed with achalasia at the age of 13, after suffering with "food blockage" requiring regurgitation atevery meal for 5 years. Finally after having a barium swallow examination it was confirmed (considered as anorexia until this) and I had the Hellers op. I am now 48 and although have "managed" the problem for this time I have had to have 2 x botox injections, 8 years ago and I am now back at the gastro dept discussing balloon dilatation. My symptons are worse when I am stressed, without doubt, and I have found that milk is my main drink with meals to assist with the flow.

    It is a truely difficult condition to live with, but I am pleased with the many years of "relief" bought about by theprevious proceedures, I only hope that the balloon dilatation can bring more relief for another number of years.

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