Achalasia the Mystery

Feb.07 I was told I have chalasia. I could not keep food and lost 52 lbs

I did not choose the options offered but am doing massage,accupunture and chiroprctor. There are good days and bad. Sometimes I can eat chicken and sometimes not. I have spasms where I cannot breath. With the treatments I am much improved with the spasms,not as long not breathing. I have been looking for a site where others share the same. Please give me any advise or atleast ways others are managing. I can't believe it's been a year and lately I have been having difficulty with accepting the condition.

thanks

gbv1

gbv1 gbv1
46-50
6 Responses Mar 19, 2009

I have had achalasia for 4 years. i was ready to get surgery but the more i read the less I'm convinced & i don't like the acid reflux side effects/lifetime of meds- They don't do fundolipcation here where I am (& that too can have complications). "My" surgeon is apparently the best. For some reason, in past 4-5 months I have been getting better & better. i used to have all the symptoms almost daily(regurgitation, spasms, foam, trapped air, tightness, breathing probs, etc!!) for days on end & it was horrible. i have taken Vemma juice, not eating super fibrous or chewy foods. i find soups, lentils, beans, roasted & steamed foods best. And unlike others I found cold/ice cold best for me! I lived off frozen yogurt ice cream for over 1 yr. + but not now. I also used to gauge when i needed some water to help & when it would cause food to flow back up. Sometimes water in past would help dislodge things or relieve tightness even though last thing wanted to do was drink. I now drink generally when i want & when no tightness. My goal is to remain calm, using positive , healing affirmations, finding supportive people, make some good life choices. I already eat healthy but avoid foods like breads, pizza, raw veggies (lettuce) b/c could get caught, & meats unless soft & not too chewy. Always small bites. Also its best to eat small meals at a slower pace so as to not overwhelm the esophagus. I also had dilation & in the past it had not seemed to work. I am going to do it again but I'm told you cannot do continuously thru life or it stretches. <br />
I also sleep slightly elevated with 3 pillows & this helps. Also dont try to eat within 2-4 hrs of bed. For some reason my intuition is saying no to surgery. I've been on the wait list for 3yrs+ & now surgeons/specialists snippy b/c i'm waivering on surgery. (they lost me in the shuffle as should wait 2 yrs max). It's just not clear cut enough for me. I still experience some minor tightness & only a very few x's had to force regurgitation. But it's 50x's better than before. Reduce workload may help?? I really am doing better which is not helping my decision to get surgery or not!<br />
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**Can someone please tell me WHAT symptoms you STILL have AFTER surgery?!** thanksTk in Canada

I too was on Nitro at 31...it helped with some of the bouts...but for those of us with exceptionally hyperactive Achalasia, surgery and massive lifestyle changes were the only way to make it go away for a time. Your symptoms most likely will return no matter what...unless you can keep stress, illness, aging, etc. all away. I've had an awful time accepting my disease...but it does nothing to help me, just fights off all the things that actually will HELP me have a higher quality of life. The longer you let things go, the worse it could actually get (as in the case of my over-stretched mega esophagus)...I may end up needing a new esophagus altogether now, because I avoided the symptoms and signs and didn't stick with my treatment (think ignoring pains & still trying to eat whatever I wanted). The Heller myotomy was a GODSEND, I ate, I drank & it worked wonders. Some people don't get the full myotomy, some do, some get partial wraps...I say get whatever the best doctor you have close by can offer you. Botox wears off, stretching wears off, the Heller will even wear out eventually...this is a lifelong maintenance REQUIRED situation. Try to get as much quality as you can in your life for as long as you can...I'm grasping at every moment I can...one day I could end up on a feeding tube thanks to A...TAKE CARE OF YOURSELF. No one else knows you, or your body like you do...do what it takes, because no one else will do it for you...and if you refuse the doctors all the time, they too will end up not making it a priority--if you're not willing to take care of you, why would they? There's no miracle drug, there's no permanent fix, it ****** me off too...you're NOT alone. NEVER in a million years would I ever say go get surgery....but for this, I would. I had my surgery in 2007, and I'm set for another soon. I was diagnosed in 2006, but suffered since 2005...I was 30 when it began. We're never going to be younger, no matter how healthy we are-- this will still be present. There's my advice for you...do what you can for YOU...don't listen to anyone else on the "what ifs" or "it doesn't work for me"...if I had, I never would've found relief for all the years. Try everything until you find something that does work for you! And then try again when your symptoms come back...that's all we can do.

HI I ALSO HAVE ACHALASIA. HAVE HAD IT FOR ABOUT 6 YRS. HAD BOTOX AND SURGERY TO CUT MY ESOPHUGUS TO OPEN BETTER. THE BOTOX WORKED FOR AWHILE BUT THEN IT WAS BACK.HAD SURGERY IT DID NOT WORK ON ME OR TWO OTHER PEOPLE.THERE WERE 33 OF US;THE REST IT HELPED. I TELL YOU WHAT I USE WHEN IT HAPPENS TO ME I TAKE MY NITRO PILL. YES THAT'S RIGHT. IT TAKES TWO AT FIVE MINUTE ENTERVULS.IT WORKS BECAUSE AS YOUR HEART YOUR ESOPHUGUS IS ALSO A MUSCLE. SO JUST TO PASS IT ON. I HAD A BAD EPISODE TWO DAYS AGO AND I AM STILL SORE FROM IT ALL.. YOU MIGHT WANT TO TRY NITRO.:)

Mangosteen and yoga and meditation is my recommendation. Mangosteen, whole fruit, either in capsule or juice, helps heal the digestive tract (as well as an assortment of other benefits). All benefits you see will probably be very gradual. Meat seems the hardest to get down. I make a habit of chopping everything up into tiny pieces, chewing throughly, and drinking alot of liquid during each meal. I won't even try to take one bite if I don't have access to water. I bird dog my stress level and if I feel tense, I refrain from eating. Doing all the above, worked for me. I went from being afraid to ever again try eating in front of others, to going out now with relatively few issues. If I feel like things are beginning to tighten or back up, I calm myself, listen to the conversation, smile, relax and when I feel the food finally go on down, I take sips of water, then begin to eat again, very slowly. Our bodies are all unique and when our lives get out of whack, out of balance and for too long, each one finds its way to cry out. we just got stuck with this way. :-)

Its tough to accept it. Its been some 6 years for me and I still deal with it every day of my life. My wife and children have become accustomed to the occasional spit up routines. I had the dilation done about 4 years ago and the rest I have changed my lifestyle to whatever was necessary. My personal life changes, I sit down at the table with a minimum of 2 glasses of water without ice. I will drink between 4-6 per meal. I take smaller bites and use the water to flush the food. I try to not eat after 8pm because food in the tract hurts while I am sleeping. I drink another 6 glasses of water before I go to bed. I sleep on 6 pillows that are built in a lopsided pyramid and try not to move. Sometimes it works, sometimes not. I also chase the water before bed with 2 Calcium carbonates for the just in case. I don't know if this helps, but this is what I have learned that has helped me. I hope it helps you.

I am sure there must be support for you. Have you tried the natural foods department of a store like Sprouts or Sunflower? Don't give up~