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Achalasia

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who has Achalasia ? and pains do you get.

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  • ducky1
    ducky1 Guest

    Posted

    I was diagnosed with achalasia when I was 28 but the

    symptoms started when I was 22. It took 6 years to get a gp

    to believe what was happening was real and not in my mind.

    I then had two dilations done and although they did help things

    were never right and then in 2011 I was refered back to the

    hospital and the consultant was brilliant.

    He sent me to the royal london for an impedance test and I also had to wear a monitor for 24 hours.

    I was then reffered to a brilliant surgeon called mr safranek at

    addenbrookes in cambridge and had the hellers myotomy and

    fondoplication in 2012 and things have been great.

    I could not keep anything down even water before but now I can.

    I have been told never to try and eat things like steak and always

    have to be careful of what I do have and find I need to have

    sauces or gravy to help things go down and drinks lots of water but I am still happy with the results.

    The surgeon has pointed out that there is no cure for achalasia

    and the surgery is only to relieve the symptons.

    The only pain I get is from acid reflux which I was told could get

    worse after surgery but I take nexium which helps.

    I do have to avoid alchohol and certain spices but I can live with that.

    although it has only been 3 years since the surgery I do not

    seem to get the pains you are all describing.

    I am going for an encdoscopy on friday to check things are ok

    But I don't regret having the surgery for one minute.

    The surgeon/consultant has been brilliant and has said that

    if I ever have any problems just to contact him and not my gp

    as most of them have never seen achalasia and do not know

    to treat it.

    • didragon
      didragon ducky1

      Posted

      thank you ducky1 - a positive post at last ! I am wondering if I should have a myotomy or not - I can get soups and even sloppy foods with sause down although can only do this standing up and have not sat down to eat in more than 3 years - I am dearky hoping I will be able to sit to eat if I have the op but looking at these posts am wondering if that would indeed be the case
    • ducky1
      ducky1 didragon

      Posted

      Only you can decide whether to have the surgery.

      I felt the same as you but thought what have i got to lose, i couldn't carry on the way i was and in the end i am so glad that i had it done.

      I am still doing ok after three years and if it does get bad again i will face that problem when it does. At the moment i am just enjoying the relief that the surgery has bought.

      Don't get me wrong things are still difficult at times as stress can cause difficulties and there are things i will never be able to eat like steak, certain breads all other red meat.

      I have bought a mincer and if i want a roast dinner like lamb then once cooked i just mince it after roasting and it still tastes good.

      I have to be carefull what goes into my dinners such as spices but i can put up with all that. i can eat a lot more things than i could before even if you take away the things i can't eat.

      I find eating in front of strangers difficult and have to drink lots of water to eat but for me the surgery was still worth it.

      I wish you well and as i said the surgeon told me there is no cure just

      relief from the problems.

      let me know how you get on.

    • didragon
      didragon ducky1

      Posted

      Thanks Ducky1. i suppose it is worth a try , if I could just sit down to eat however much i had to drink or whatever I had to miss out I would be so happy , will let you know
    • michael76362
      michael76362 didragon

      Posted

      New to this. I would 100% recommend having the myotomy. I was diagnosed at 15, after it taking around a year to figure out what was wrong.

      I had all options for relief put to me, dilation, botox etc but the thing that made up my mind was the surgeon saying the surgery would be more successful than any other procedure. I even had the option for keyhole surgery but went for open surgery because the success rate was higher.

      I was around 6ft tall at the time and weighed a mere 8.5 stone (120lb) but now 8 years later I'm up to 11.5 stone (160lb).

      I still have complications with achalasia of course I still need water or milk with a meal and get the chest pains which again I find cold water or milk the only relief. I actually came on here to see if there were any other remedies from fellow sufferers.

      But my lifestyle has improved since the op and would recommend to anyone considering it. smile

    • didragon
      didragon michael76362

      Posted

      Hi Michael

      I went ahead with the op 6 weeks ago and am very happy I did. I traveled 3 hours up the motorway to see Ian Beckingham and result is fantastic , can eat and drink sitting down, even had a sandwich at work today ! Can eat salads and fruit too it has changed my life and wish I had done it sooner . For the spasms I have found altoid mints work best due to high concentration of peppermint oil which is antispasmodic , . May be worth a try

  • lizroth9
    lizroth9 Guest

    Posted

    Most of these posts are pretty old but I have been looking for everything you are all talking about. I was diagnosed with Achalasia 6/2015 (at age 25) after struggling with it since I was 22. It started as mild hiccups but got so bad I couldn't get water down.

    They tried botox, which worked for a few weeks but food started to regurgitate again. I decided to go for the Myotomy and fundopication, went to some great digestion specialists in Denver. I highly suggest the surgery, I thank God everytime I eat because being hungry and unable was the ultimate kind of terrible. I still need water with my meals but that is a small price to pay.

    The first year and a half were great but I have been recently experiencing chest pains that are so excruciating, I feel it from my sternum all the way up to in my jaw. I have been reading the thread which makes me feel like it is from acid reflux but also could be an achalasia spasm? The only real relief is when I take IBprofen or some type of pain reliever but I am an extremely healthy person and do not want to depend on pills just to get through my day. It happens about once a week and I can't seem to find any specific trigger, any advice or support helps. Thank you.

    • salviemia
      salviemia lizroth9

      Posted

      Hi lizroth9

      i just see your post, the pains you are getting sound just like mine and its really hard to find what triggers it of. I have been to the doctors but they are not really helpful.I drink cold waer when i feel one coming on and that sometimes gets rid of it. I still get them about once every week or 2 and they are so severe i find mself not bening able to move. 

      I would like to know what causes them and how or if you can prevent them from coming

      any help please

      thanks

    • peter74445
      peter74445 salviemia

      Posted

      I too have had Achalasia for a long time. I first experienced the pain before my swallowing became an issue. It was in the year 2000 and I believe that the doctor thought I was psychosomatic and that I had other issues that were causing things on a subconscious level. By 2002 I could only keep a percentage of food down. I had to sleep sitting up or the food sitting in my esophagus would ride up my throat and start to drown or choke me. Needless to say I lost a lot of weight. Eventually I was diagnosed with Acute Achalasia which meant that the muscles were pushing food up instead of down. I had countless dilatation treatments until they had no effect. In 2006 I had the operation which worked for a couple of years.

      It is now 12 years later and I have found that I just have to live with it. I have the pain at least once a day. I drink cold water which helps or thick yogurt. The thicker and moor cold the better. This will at worst give some brief relief.

        

      As far as swallowing goes, like Pavlov's dog I need to prepare myself for eating. Drinking some water just before I start eating helps. Smelling the food and on some sort of subconscious way trick seems my body into preparing for food.

      I read that some people experience the rib pain. Yes my rib pain is permanent. This is something doctors don't seem to understand. I do worry about it as perpetual pain can not be good for you! 

      I know this may not help anyone, however, it good to know that other people experience the same issues and to know that you are not all that alone.

      Hang in there friends!

  • bashir92095
    bashir92095 Guest

    Posted

    Hello. I had my heller myotomy 2 weeks ago , no more reguration and i can eat peacefully. The chest pain is still there specially in the early mornings. I will try the spray to see if it helps. I can say that the occurance of chest pain increases when iam stressed or anxious.

    Good luck guys !

  • Rachel_2018
    Rachel_2018 Guest

    Posted

    Hi

    I was diagnosed with Achalasia when I was 8yrs I am now 45. I had a Heller's Myotomy which was a success to a degree. As I have read on this forum people drink lots of water to help their food go down, pain that is felt is not necessarily connected to the eating of food. I used to have tremendous pain day or night it didn't seem to matter if I ate or not, the reason for my pain was severe re fluxing of the esophagus. I had several dilatation's until my consultant said that he could drive a bus down my esophagus nothing seemed to help. I went for an out patients appointment and my doctor explained he would like to operate with a new technique this was to remove my esophagus and pull my stomach up joining it on to a very small amount of my gullet. It took a long time for my body to get used to the new anatomy however I got better could eat loads without water and no pain........ Two years ago I started to bring up bile no one really knew why this bile was flooding my left lung so I spent a long time in ICU. I had to have surgery and I missed 2 years of my life, I now have a feeding tube in my intestine as I cant eat I am due to have more surgery on the little bit of esophagus I have left just for one last chance to be able to eat something. My consultants say that I have complex needs I really hate that reference I always wonder if I hadn't had my esophagus removed that my life would be different now. I feel that operations can all have an affect on later life and I would be so careful on decisions that are made.         

    • AlanJM
      AlanJM Rachel_2018

      Posted

      I think that people who have had their oesophagus removed do suffer from bile reflux, but it all depends on how much of the stomach remains, and the details of the surgery.  

      ?I do not think you had any real option about the surgery, because when one gets to 'end stage' achalasia, removing the oesophagus is probably the better option than all the complications you would otherwise have had.   The Oesophageal Patients Association have a website that deals with life after this surgery, and you might find that helpful?

       

    • Rachel_2018
      Rachel_2018 AlanJM

      Posted

      Hi Alan

      Thank you for replying to me, I have never really spoken to anyone who has had to have extreme surgery for the Achalasia. It gets me down but I will look at the web page that you suggested thanks again Rachel

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