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Achalasia - The journey

Posted , 5 users are following.

abigail66654
abigail66654

I have posted on a couple of other discussions but decided it might be best to just start a post of my own to share my story and see how it compares to  others. I am having the POEM Procedure this Friday and have started my clear liquids diet in preperartion and will post again after the operation.

I am 51 years old. I am newly diagnosed with this disorder and scheduled for the POEM procedure Friday April 15th. This all began with with having to clear my throat constantly about 6 months ago. Then the difficulty swallowing and the regurgitation started. The first time it hit me really hard was when  i got thirsty, so as is my habit I drank a glass of water, right afterwards i leaned over to pick something up and all the water came back up. For what its worth here is how my diagnosis progressed and the health issues i had that led down the road to diagnosis. Perhaps the story will help other people. From reading other peoples stories it seems as though i progressed to full blown symptoms very quickly...

I have put it in steps:

1. I kept having to clear my throat all the time, this began in about September of last year (2015)

2. I started having some intermittent difficulty swallowing, I called my doctor and he scheduled a thyroid scan, it of course came back negative.

3. Right after that i started regurgitating food, this would have been mid October, I also came down with a UTI ( I am 51 years old and have never had one)

4. They cleared the UTI with sulfa based drugs but the swallowing was becoming worse i also began to have severe pain in my upper right abdominal area and then i got another UTI, at this point i fired my GP and went to another doctor and told him , look i don't know what is going on but here are the symptoms and i think i have an underlying condition. He tested me for gall bladder and looked at the appendicitis because of the vomiting and a fever i had developed. He also did a bunch of blood work .

5. No Gall bladder issues no appendicitis issues but some strangely elevated liver readings and what looked like pancreatitus. also we did confirm the second UTI, they treated again with sulfa drugs to which i developed a serious allergic reaction. ( my thoughts on the reoccurring UTI's is that my whole life before this I drank between 10 and 12 glasses of water per day and by this time i was down to four or five)

6. In November he referred my to a gastroenterologist.The first thing he did was complete blood work and he tested me for hepatitis because of the pancreatitus and the fever i had presented with. He also scheduled a colonoscopy and an endoscopy. 

7. After the tests it turned out i was positive for Hepatitis A (food born) antibodies showing that i had most likely recently fought off an infection. My colonoscopy was fine, during the endoscopy they found the esophagus was full of fluid. After those finding he scheduled me for a barium swallow and a swallowing study done via endoscope while awake ( that was just joyous- NOT)

8. I completed the barium swallow and the endoscopic swallowing test in January. We got the results in early February and it was confirmed as Achalasia type two.

9. I read up on it and consulted with him and we diced surgery was my best option. I got into to see the surgeon on March 17th and am scheduled for my POEM on April 15th.

A couple of things have struck me as odd the first being that most people seem to struggle with this disorder and gradually increasing symptoms for years. I on the other hand seem to have gone from zero to 80 MPH in a matter of months. Also i am not really losing weight as others have described it is almost like my metabolism has slowed to nothing....I am not eating like i once was but i am not wasting away either.

I should also disclose that I am in the US but this is the only active group of Achalasia pateints posting to a regular forum i have found. I understand that almost everyone else is in the UK, ( is that correct) I was born in London but have not been back since the mid 1970's . I hope you dont mind someone from the US joining.

Thanks and best of luck to us all!

1 like, 5 replies

5 Replies

  • kayla19404
    kayla19404 abigail66654

    Posted

    I am also in the U.S and suffer with achalasia as well. I had surgery done which consisted of breaking the muscles in my esophagus to give me some relief but unfortunately it only was 2 days of normal eating and then i was already having difficulty swallowing again. So i would say the surgery did not go good. I even tried accupuncture to see if that would help and it did for a while but then proved to not be that effective anymore. So at this point im trying to look at other options or remedies that can help me eat and also help me keep on weight because it seems like even just 1 bad day I can lost quite a bit of weight within the same week.
    • abigail66654
      abigail66654 kayla19404

      Posted

      Did you have the POEM procedure or the Myotomy? I wont be allowed to eat any solid food for at least one weel after my Surgery, clear  liquids for the first few days, then creamy liquids like cream of chicken soup and then if i am feeling good i can move to soft foods. Some of the other treatment options i have seen and researched are balloon dilation and botox injections. I chose POEM as my first treatment option because unlike Botox injections and ballon dilation which can leave damage behind prevening a later POEM procudure it leaves the other tretament options open. I wish you luck on your journey.  As i said above i have not gotton into the wasting weight loss place yet.....

      Best to you.

  • abigail66654
    abigail66654

    Posted

    1 week and three days after POEM

    So i went in a week ago last friday for the surgery:

    The surgeon was expecting to be done in a hour and half. The surgery ended up taking three and half hours. They told my husband it was far worse that they were expecting. Essentially my esophagus was in very rough shape. The first night they had me on the morphoine pump for pain so i was pretty in an out of it but i was able to get up and walk a little bit with help from the nurses and my husband. By the next morning i was not using the pump much at all. They sent me downstaoirs to have a dye test done to ensure there were no leaks from the surgery. I found out later they told my husband they were epxtcing to have complications and that they did not expect me to pass the test. Well despite their concern i did pass the test and after letting me have broth and jello and water which i kept down they let me go home.

    I am now one week and three days after surgery able to eat any soft food i like and as much water as i can drink whcih in my case is a lot, I love water and it is one of the things i really missed.

    A couple of observation about the surgery and recovery that may help others:

    1.Get up and walk as soon as you can after the surgey, They fill you with gas during the procedure and the only way to expel it is to walk and pardon the grossness fart it out. If you dont it will hurt a lot. Even if you do it still hurt foe a dfay or so. I cant imagine what it would have been like if i had not walked as much as I did.

    2. Try to wean yourself off the morphine based pain killers as soon as possible. Opiates cause consttipation. I was only taking one dose per day between day 3 and day five after surgery and that to help me drift off to sleep at night then i stopped completely.

    3. Soup is your friend for few days. i actuially managed mashed potataoes by Monday evening after the surgey but you know your own body so go with what works for you. If you feel some food get stuck dont panic calmly drink a glass of water and it wll go down.

    4. You have no incision but DONT LET THAT FOOL YOU. You have just had surgery anjd you will feel tired. It is our nature to think if we look okay on the outside we must be okay on the inside. NO ytu are healing when you feel tired go and lay down. My strnegth got to 80% by day five but the last 20 percent I am still working on.

    5. Even if like me you never had the heartburn be preparted that after the surgey they will put you on protien pump inhibitors it is to ensure that any damage you have will heal. Some of us may remain on them some of us may be able to stop them after the firrst month but even thought like me you may not want them take them for the first mopnth anyway.

    6. Expect the other body systems damage to take time to resolve itself. I feel grtat on comparision to how i felt two weeks ago but I know my body is healing in multple places and ways.

    Finally be open with your surgeon and your PCP and remember this is a treatment not a cure it may work for a period of months or years but eventaully we will all need to seek treatment again so enjoy each day of relief it gives you and support research into a cure.

    Feel free to message me if you think I can offer you any help.

    Best

    a

     

  • emusedone
    emusedone abigail66654

    Posted

    Hello, I have Achalasia and it’s gotten so much worse this year. I’ve been waiting for the POEM surgery but my GI Specialists who diagnosed the Achalasia after EGD’s, EUS’s, barium swallow tests, esophageal manometry, sent me to a surgeon who was to do the surgery. He was new to this clinic and they are all top docs I’m told. So I was so glad to get the diagnosis finally (I lost weight from 110 lbs. to 88 lbs. ) and just so sick. But when my husband and I met with the surgeon he wanted another endoscopy and other tests to see if I had GERD and acid reflux. I tried to tell him I have no burning or heartburn and that my symptoms were not being able to swallow, horrible pain where esophagus meets stomach, vomiting, weight loss. 

    But here I am, almost a year after diagnosis and still no POEM surgery. I’m so sick but the politics of this clinic’s relationship between the GI Specialists and the surgeons has me in the middle suffering. 

    I’m in Oregon. I m looking for other Specialists in this and surgeons. I have all the test results and proof of how bad it’s gotten. I just need help in finding other clinics and doctors who deal with Achalasia. I’m desperately looking so if anyone could help with some names it would be wonderful. Thank you! Susie

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