À la recherche de A ACHALASIE car l'achalasie me laisse seul et sans ressources !

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 morerolleyes.. 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  daybiggrin  

 

Dolphinz930

Je sais exactement ce que vous traversez ! Veuillez, veuillez consulter un chirurgien dès que possible ! Parlez-lui de votre meilleure option ! J'ai attendu trop longtemps et j'ai abîmé mon œsophage ! Il est maintenant dilaté et tronqué ! J'ai subi l'opération de Heller avec fundoplication et je vais beaucoup mieux maintenant ! Je dois m'assurer de bien mâcher mes aliments et de boire beaucoup d'eau pendant que je mange ! Je peux manger ce que je veux ! Bonne chance !

I do not think you can say that one procedure is better than another until a specialist has run tests to diagnose what is best for you.

Hi I had a hellor myotomy in 1981 aged 29. It made life 90% better. I started having problems again about 5yrs ago, but i coped by just running to the bathroom as needed and i could only eat very small portions. I finally went to see dr when i suffered badly with heartburn. He referred me to a surgeon who gave me an endiscopy to find my achalasia was back. He could not re operate because of my mega esophagus so he gave me a balloon dilation. I have been so much better although i do get a little reflux especially after overeating especially cream. I feel sure this option was the best way for me. Hope this helps and wish you luck .maz maz

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

Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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.

Bonsoir, j'ai été diagnostiqué en 2014, j'avais la fin de la cinquantaine avec une achalasie et j'avais les mêmes symptômes et je comprends exactement ce que vous décrivez. J'ai subi la myotomie de Heller avec une fundoplication partielle et c'était la meilleure décision que j'ai prise. C'était incroyable quand je pouvais avaler de l'eau et la sentir descendre. Je vis à Pompano, alors si vous avez besoin de parler à tout moment, faites-le moi savoir !

Hello June97861, 

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

I think your apprehension is perfectly normal.   The great majority of people do report great improvement after surgery, and there is a chance, but no guarantee, that the improved flow of food through your system will also reduce the spasms.   When you them start to eat and drink more normally there should be a greatly improved level of nutrition and sense of well being.   Very few people have regrets about the surgery.

Bonne soirée, j'espère que votre chirurgie se déroulera comme prévu. Essayez de ne pas vous inquiéter (je sais que c'est facile à dire). Oui, j'ai subi de nombreux tests, mais je suis content de l'avoir fait. Je suis resté à l'hôpital après l'opération, mais mon niveau de douleur était minimal. En rentrant chez moi, j'ai commencé par des liquides et du bouillon la première semaine et j'ai très progressivement introduit des aliments mous. J'ai commencé à faire des jus et des légumes mixés, ce qui m'a aidé à retrouver une bonne nutrition. Donc après quelques semaines, je me portais à merveille. Je n'ai pas eu de problème, peut-être quelques petits ajustements récemment, mais probablement à cause des pâtes que je mange rarement. Je ne referai pas ça. Je me souviens de cette douleur dans la poitrine, c'est affreux. Cela fait bientôt 3 ans et je suis si heureux d'avoir subi la procédure. Dans quel hôpital allez-vous subir l'opération ? Gardez le contact !