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Achalasia, your experiences and my story.

Posted , 14 users are following.

elfie90
elfie90

Hi, new here. I have been suffering with sickness, extreme dysphagia, weight loss and chest pains for 12 years. I am 27 years old. I have had repeated endoscopies over the years which never showed anything significant, however the one I had this week shows probable achalasia. My weight has plummeted to 7.5st. I seem to struggle with all food and liquids other than water. I have to drink several glasses of water whenever I eat to 'push' the food down. I can be sick anywhere between 5 and 20 times per meal. It has been extremely distressing for me to have faced frequent accusations of being bulimic or this being all in my head. I even wake up vomiting in the middle of the night. I feel like this condition has taken over my life. 

Im interested in hearing your stories. Is there hope yet? 

1 like, 36 replies

36 Replies

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  • Trisherbell
    Trisherbell elfie90

    Posted

    I feel for you.

    I had my surgery 2 years ago....Hellers Myotomy with Fundoplication. Nothing will take Achalsia away, but the surgery gave me my life back.

    I still have to drink with food to ensure it goes down, and foods like bread and cake are off my menu. But its better than it was.

    I say this....I have Achalsia but Achalsia does not have me! (Most of the time anyway!)

    It's a horrible condition....but I find a positive in every day x

    • elfie90
      elfie90 Trisherbell

      Posted

      Thank you for the reply, it's wonderful to see some positivity! I hope I can be the same. 

    • Cowgirluc
      Cowgirluc Trisherbell

      Posted

      I just had the hellwe one dine June 13 2017 and so far that one pain is gone . and yes I will always have it but you are right I can't let it get me ! Cheers 😊

  • Trisherbell
    Trisherbell elfie90

    Posted

    I have down days. I try to stay positive but sometimes I allow myself to have a bit of a 'why me?' moment, with a side serving of 'I hate this, it's s**t!"

    Then I have a bit of chocolate!!!

    • Cowgirluc
      Cowgirluc Trisherbell

      Posted

      Darn it chocolate is one thing I can't eat . But I keep trying. Yes I'm in to pain 😊

  • AlanJM
    AlanJM elfie90

    Posted

    It can affect people of all ages, including children, but you certainly need to see a specialist Upper GI (gastro-intestinal tract) surgeon.   There are many positive stories of much relief given by surgery, and a probably equal number of cases where the diagnosis has been delayed after years of suffering.   The tests are a barium swallow test and high resolution manometry;  normally an endoscopy as well but you have certainly had far too many of those!

    ​There are a couple of stories on the achalasia section of the website of the Oesophageal Patients Association.

  • dolphinz930
    dolphinz930 elfie90

    Posted

    Elfie, I know exactly how you feel mother accused me of forcing myself to vomit.  You really need to see a doctor as soon as possible. and start a treatment plan.  there are options for you depending on how you feel or want to proceed.  I have lost 45lbs since mid June. I am now not able to swallow food or liquids.  if i am luck on a good day i might adsorb  about 20 percent of what I attempted to eat. My doctor is urging me to get a feeding tube put in just until surgery.  I haven't seen the surgeon yet (but will this Wednesday...yeah) so I don't even know when surgery will be. I feel for you and your anxiety and depression that comes with this disease but just know you are not alone. I have met some very kind people HERE on this site.  I felt so alone and depressed, but having this site has helped me a lot.  Just having some one else going through exactly what you are going through ....my family try to support me but it is hard on them just the same.  they will forget and say "hey lets go out to dinner"  as going out to eat is special, and I will have to say maybe next time. but never the less you got all of us here to help get you through this....I will keep you in my prayers.

     

  • k84461
    k84461 elfie90

    Posted

    Hi. I had it when i was 12 and wasn't diagnosed for 9 months which made me go down to 4 stone. They would not operate on me when i was admitted to hospital because of my weight so put a tube down my nose and fed me some liquid stuff through that. It was horrible having the tube inserted and removed.

    I could not eat or drink anything at all either without throwing it back up and i too was accused of having nothing wrong with me which was very hurtful. 

    • AlanJM
      AlanJM k84461

      Posted

      That is a horrible experience, and it is bad enough when you are older and the doctors do not take what you are saying seriously.   Sometimes they put it down to an eating disorder like anorexia as if you did not want to eat.   

      ​We had a patients meeting on Monday evening with around 27 achalasia sufferers.   About two thirds of them thought that painful spasms, when they had them, were often triggered by stress or fatigue.   So I think that some of this can be chicken-and-egg.   You get stressed because you cannot swallow, and this makes you more tired and weak.

      ​I suppose that the answer might be to challenge the doctors to give you a barium swallow test or manometry so that they can confirm or disprove what you are saying is wrong with you, but that is sometimes easier said than done.

       

    • k84461
      k84461 AlanJM

      Posted

      27 sufferers!? blazes! I get tired after eating. 

       

    • emusedone
      emusedone AlanJM

      Posted

      I agree with OPA_AlanM. Getting the barium swallow test and/or the esophageal manometry can confirm what you’re suffering with. Fortunately I was in the hospital because of malnutrition caused by severe abdominal pain. I was given a barium swallow test because I was trying to explain to the doctors that I can’t eat because food/liquid gets stuck or takes forever to go down and causes me severe pain. I would vomit after the pain started and would double me over. On a hunch the GI Specialist assigned to my case in the hospital ordered the barium swallow test and this set into motion other tests like the EGD, EUS which SHOWED my esophagus closing off this led to the Achalasia diagnosis and further testing, the esophageal manometry, which showed just how much pressure was happening and how badly my esophagus was functioning or not functioning. Thankfully it was the Specialists convincing me of Achalasia and not me convincing the doctors. However, I hit a bump in the road when I was set up with a surgeon to have the POEM (the two GI Specialists advised me to get straight to the surgery and not mess around trying the balloon or Botox) The surgeon put the skids on the Achalasia diagnosis and I’ve found myself in the opposite situation, trying to convince the surgeon that I have Achalasia and not GERD or a simple case of acid reflux. I recently finished another round of EGD, etc. ordered by the surgeon and during that EGD surgeon did a balloon dilation because he couldn’t get through the junction. But balloon didn’t help and I’m left in limbo.  I agree with the anxiety and stress. Since all this has happened, my condition is worse especially when I feel stress. I was asked if I felt I had an eating disorder, was I making myself throw up. No! So I’ve been on both sides, having Achalasia or swallowing disorder diagnosed by excellent GI Specialists AND having Achalasia but a doctor doesn’t believe I do and changed diagnosis. It’s all so strange but you just have to know your truth, be open to hearing the doctors out, after all they are the specialists, trust your body and what it is trying to tell you and finally not taking “no you don’t” as an answer.  If you have a treatment and it doesn’t help, don’t give up, keep pushing through and looking for help. 
    • AlanJM
      AlanJM emusedone

      Posted

      I think you might have to ask for a second opinion and get the manometry, endoscopy and barium swallow test result sent through?   POEM is one surgical procedure;  Heller's myotomy with a fundoplication would be the traditional alternative which can often be better for preventing reflux afterwards.

  • jolene68965
    jolene68965 elfie90

    Posted

    Hello All,

    I too have Achalasia. I have been diagnosed with it since 2000.

    I suffer from all that you all mention. I have been accused of Bulimic etc... People don't understand.  and the embarrassing bathroom trips and excuses, sometimes I carry my phone to the bathroom pretending I am on or got a call or I got something on me to excuse myself to go bring up my food, just so people don't start wondering what and why I'm up and down so many times. its a disgusting to include putting my face into a toilet the smells the germs etc... I HATE IT!. on a good note, I have maintained my weight this year. When I first got Achalasia I was 289 lbs, today I weigh 149  which is a plus currently however, the spasms and waking up choking are starting to return more often then I care for them to be . Recently, I am suffering with what feels like leg cramps but instead of it being up and down one of my arms its like it is stuck in the mid portion of my back it hurts to breath in, it's annoying not sure if any one has felt or knows what I'm describing.  When I wake up usually my chest feels like stabbings and jabs have taken place and eventually it will make me have a dry heaves with paralysis where I have no control of my saliva until the heaves and pain subsides. It miserable.  the doctors all say its not stress related and really as you all know not hereditary yet there is really no clear explanations of Achalasia, I say, we are the unlucky ones because people really do not know what we go through on a daily basis the struggles the hunger the wishing of being normal and for once, just once being able to enjoy an meal with our families.  I will pray for all of you. and hope that you can all find relief but it is a never ending battle 24/7.

    I know we

     

    • Cowgirluc
      Cowgirluc jolene68965

      Posted

      Have you thought getting the Robotic heller surgery? I also had those bad pains you discribed and I had my surgery this last June and doing way better now. I can eat a small meal now with no pain. I have type 3 achalasia and still have spazing .Good Luck !
    • jolene68965
      jolene68965 Cowgirluc

      Posted

      Thank you for responding  and to you as well I hope you continue to do good.

      I definitely know your struggles.

      I have had numerous endoscopy's, Barium Swallos , Measure the acids in the esophagus  Heller Myotomy and till this day had never heard of Robotic Heller Myotomy also had Botox in my esophagus had some help until it wears off the Botox.   

      I have had this so long that its depressing but these spasms I would love to be rid of as you know..

      Its just nice to share with others that understand what we live every day. 

    • AlanJM
      AlanJM jolene68965

      Posted

      Unfortunately it is not unusual to be accused of having bulimia even though you actually want to eat and swallow food normally.   We had a meeting of around 30 achalasia sufferers a couple of weeks ago, and stress was the most frequent cause of the painful spasms.   The pain often gets transferred to other parts of the body through the nervous system.

      ​There are some medications that might help with the spasms - like Buscopan or nitrates or other medications that tend to increase the blood flow, or act as smooth muscle relaxants.

       

    • Cowgirluc
      Cowgirluc jolene68965

      Posted

      Look that robotic surgery up on line . If you have a surgery do this one do t do the POEM cause it opens your spincher up but by doing it it will also allow acid up your esphogus which is really bad for us . I was told this and thats why my doc dose not do that surgery any more to many complain about acid reflux.

      I will say I can't eat and food goes down to stomach. I watch what I eat . I still have spazing due to stage 3. I don't have that unbearing chest pain. Look for the right surgeon. I went to Portland Oregon .Dr. Dolan has done several of theses . I do have 4small 1" incision so scaring not bad to get that pain away

    • elfie90
      elfie90 jolene68965

      Posted

      Jolene, I had to half laugh when reading your comment. The bit about faking calls to try and explain frequent bathroom trips - I do this all the time! Glad it's not just me who worries about this stuff. 

      Wishing you well smile 

    • emusedone
      emusedone Cowgirluc

      Posted

      Thank you for the name of your doctor. I’ve been going to Portland but a different surgeon and need a second opinion and surgeon. It’s difficult finding a surgeon that knows how to treat this and doesn’t just experiment with you by trying this and that which didn’t help and has only prolonged my problem. I’ve been waiting a year for my surgery. 
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