LOOKING FOR A ACHALASIA as Achalasia leaves me feeling alone and clueless!
Posted , 5 users are following.
Hello to anyone who reads this. My name is Beth and I live in Ft. Lauderdale, Florida and I am 46 years young. I am not exactly sure when Achalasia started but it has been at least 4 years now. At first it seemed to come and go and it really didn't bother me too much so I just let it go. My Achalasia seems a little different than others as I have the hardest problem with liquids. I feel so alone and I cant share what is going on with friends and family as it sounds so gross while trying to explain what I am feeling or what is happening. My mother first thought that I was forcing myself to throw up and didn't believe me. My son who is 25 I can always talk to but he worries about me and I wouldn't bog him down with my health issues i'm sure you can understand.... I am confused on which is the right procedure to do.... Is the Heller better than the POEM . or POEM better than the Heller.???? I have found and read so much information online and have tried to be as best informed as possible, that being said it feels like I am going in circles. One article says Heller is the Gold and Poem is the Silver. while the next article says the exact opposite. I know Poem is new which leaves me with the question of How long does it last? the only answer i have gotten is it is so new they really don't know and can not really say as of right now i so their answer is up in the air. I have read many horror stories and then just as many success stories on both procedures . If anyone has any advise to help me during this process please PLEASE respond.my life has changed so much and I am so depressed all of the time.
I used to love to cook so it really sucks when you can't even take a taste of what your are cooking of fear of throwing up so I don't cook like I used to. I cant sit like a normal person and eat dinner with my family at the table and If I do sit at the table I wont eat or drink anything for fear of having to rush to the bathroom. Even the day of my Barium, as soon as I was done with x-ray and was leaving as soon as I got off the elevator i could feel the Barium in my throat and couldn't find a bathroom anywhere. I had to use a garbage can (which was disgusting might I add). I used to be a very happy go lucky person who loved going out , shopping and cooking. Now I don't do much anymore. Being in Florida and summer it is hot. I used to walk around with cold water all the time and now I can not drink unless I want to share my regurgitating with the world. I am embarrassed for my daughter who is 10 as I have had accidents while drinking in front of her friends on a field trip. I do notice that cold liquids are much worse than room temp. liquids and soft liquids like: ice cream and smoothies or shakes just don't work for me . I have cut out all meat and stay away for gassy veggies. which doesn't leave me with much. I can sometimes force the food down with BIG BIG GULPS OF WATER, but most of the times it back fires and everything is violently pushed right up and out with no control or warning so I don't try it to much any more
.. I have noticed since October of last year things started to get much worse. while before I could get a few bites down now not so much. I would find myself three to four hours later spitting up what I ate and it hadn't been digested yet. It was just sitting in my esophagus. I sleep in a upright position and don't eat or drink for at least 4 hours before I go to bed. I find this helpful so I don't inhale what ever is in my throat. I wish I could say that it stops it from happening completely but it doesn't. I wake up a minimum or /5 nights a week coughing choking with the feeling of drowning. and that will last for an hour or two.
Well if anyone needs an Achalasia buddy please Let me know I would love to have someone who can understand what I am saying and not feel sorry me. Have a wonderful day
1 like, 9 replies
loretta15882 dolphinz930
Posted
I know exactly what you are going thru! Please please get to a surgeon as soon as possible! Talk to him about your best option! I waited too long and messed up my esophagus! It is dilated and truncated now! I did have the heller myotomy with fundoplication operation and am doing so much better now! I do have to make sure I chew my food extremely will and drink lots of water while I eat! I can eat anything I want! Good luck!
AlanJM dolphinz930
Posted
dolphinz930 AlanJM
Posted
Hi Alan,
Another person on this site told me that you had a link or a download I should get from you. the doctors here in So. Florida really don't know too much about Alchalasia. My primary care Dr. started to explain somethings and I had to correct her as she was completely off. I am lucky she didn't take offense and listened to me. I keep hearing everyone say that they can push the food down with a great amount of water or liquids. I find liquids do nothing but bring every up violently if I try to force. food seems happy to just sit there until I drink or if I fall asleep I wake up choking. If you could at you earliest convenience please send me the link or web address to where I can download the information so that I can not only print up for myself but for my doctor as well. My doctor is very nice and felt terrible that I had this condition but was excited as of how rare it is and asked to be apart of all my procedures.
Thank you in advance for your time in sending me the information.
my email is
Thanks Again
Beth
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AlanJM dolphinz930
Posted
Yes, it is called 'A Patient's Guide to Achalasia' and you can download it from the website of the Oesophageal Patients Association - go to The Oesophagus and then Achalasia and the link is towards the bottom of the page.
Maz_Maz dolphinz930
Posted
june97861 dolphinz930
Posted
Good Evening, I was diagnosed in 2014 was in my late 50's with achalasia and had the same symptoms and understand exactly what your describing. I did have the Heller Myotomy w partial fundiplication and was the best decision I made. It was amazing when I could swallow water and actually feel it go down. I live in Pompano so if you need to talk anytime , let me know!
dolphinz930 june97861
Posted
Just wanted to drop you a quick hello. I look forward to my surgery on the 19th but MAN oh MAN do you have to jump through a lot of hoops. but I guess it is better to be safe than sorry. After my first surgery was cancelled I now worry that the one on the 19th will be cancelled also.. Well I would love to take more with you as you are so close to home and know exactly how it is to not eat or drink.
How has your progress since surgery? I would love to ask questions about the surgery as I am fearful that some say there is a lot of pain after and some say it is nothing. I am not a candy ass that cries at a hang nail but that being said. the pain I get in my chest from this stops me dead in my tracks and I feel like I cant breathe. Any advice you can give I would be grateful.
Lots of appreciation for any advice you can give.
Beth
Ft. Lauderdale
AlanJM dolphinz930
Posted
june97861 dolphinz930
Posted
Good Evening, I hope your surgery goes as scheduled. Try not to worry (I know its easy to say). Yes I went thru numerous tests but glad I did. I stayed overnight after surgery but my pain level was minimal. When i got home I started off with fluids & broth the first week and very slow introducing myself to soft foods. I started juicing and pureed veggies which helped getting nutrition back in my body. So after a few weeks I was doing great. Have not had a problem maybe little tweaks recently but probably it was eating the pasta which I seldom have. Wont do that again. I remember that pain in my chest, its awful. Its going on 3 years and so happy I had the procedure done. What hospital are you having the surgery? Keep in touch!