Achalasia

Hi @bilobabe,
Welcome to this discussion forum about achalasia. @amoll157 certainly will understand your situation. She too has to be very concentrated when she eats, chewing 20 times and taking up to 30 minutes for even a small meal. Recently @fjg827 had a PEG (feeding) tube surgically implanted. I hope they will return to share their experiences with you.

Bilobabe, what reasons did your doctor give you about why surgery isn't an option in your case?

Hi, I'm over 86 and am told no surgery. Eating was always an enjoyable time ... no longer. I can get food into stomach by turning head extreme left to swallow food or liquid. Sounds easy enough. But I have to chew on left, move food to center, get ready to swallow, turn head near shoulder LEFT and turn right back to close the sphinter muscle. Over and over again. Doc suggested I eat alone, not with hubby, no tv, no distractions .... even then my mind wanders ..... but it must not. Who wants to eat like that? Hubby is into 9th year of Alzheimer's and I'm his caretaker. So .... I try.

The procedure is done as an outpatient.<br>In and out the same day. No bad pain.<br>Sore for about a week where the incision <br>is. Everyday the feeding routine becomes easier. You start feeling better right away. Reflux has stopped completely. Good knowing that you are getting the right nutrition.<br><br>

I was diagnosed in 2010. I couldn't eat for 3 weeks. My lower les closed up completely. It took 3 months for 1 Dr to figure out I had achalasia All other Dr said I had a food sickness and 1 said I had marijuana syndrome. Lol they were all wrong. The Dr from costa Rico said he seen it in his country. Than it all made sense to me. I've been very slim all my life. Since young I would choke on food. Everyone would tell me I'm eating too fast or not chewing well. I choked several times a day on foods. At age 35 it got worse till it completely closed shut. I was on Iv for 3 weeks NPO. NO water no food. I can never gain weight. I eat like I weigh 200 lbs but I'm only 134. I use to be 155 until it completely close and I drop to 120. Dr said I also have a eating disorder. I eat small meals every 2 hrs. It's horrible. Every few months I get INflammatory bowel syndrome. I will throw up for days and diareah for days. Once the hospital puts me NPO fir days till my intestines calm down. Achalasia a Latin word meaning for not resting. Well same thing happens to my intestines. Two horrible problems but I feel they are related. My surgeon is Dr Eugene Banks here in Orlando Florida. Great Dr and person.

Hello @fjg827,

Welcome to connect. Thank you so much for sharing some of your history; we're glad to know that you have been able to find some relief. If I may ask, when were you diagnosed with achalasia? Do you have any other suggestions/advice for @amoll157 and other members who have this condition?

@amoll157, here's what I found on POEM from Mayo Clinic: Peroral endoscopic myotomy (POEM) is surgery with no outer incision, and is available for treating achalasia at Mayo Clinic. In this technique, doctors use instruments attached to a lighted, video-equipped tube (endoscope) passed through the mouth and esophagus to make an internal incision in the muscular valve at the lower end of the esophagus. The POEM procedure doesn't require an incision through the abdomen.

I did find some very encouraging clinical updates for achalasia on the Mayo Clinic website; you can read details here: http://mayocl.in/2kxB8lG

And, (I know it's a lot of reading!), I would sincerely encourage you to see this discussion on Connect, as well:
"I have acid reflux so bad it is coming up into my sinuses": http://mayocl.in/2aLKaZm

I have to eat cereal and farina and soft food as mash potatoes. I can eat meat but must chew 20 times before the first swallow. Takes about 30 min to eat a small meal. Lots and lots of fluid. My surgeon told me in time I must remove my whole esophagus because it's already badly damaged. I'm the main supporter for my family so I can't stop working. I just don't know what to do at times. At night sometimes I must sleep sitting up. My les is open all the time. If I lay down flat it creeps up my throat. Horrible feeling. But worst it the spasm in my esophagus. Extremely painful and nothing to stop it. Just have to let it pass. What is the new procedure. POEM

Wow. I'm so sorry. My surgeon told me I had to remove everything too. I'm scared to go that route but I know it's only a matter of time. It's badly deteriorated. How was your procedure and was it painful. Please tell me all about when u have time. Your the first person I know who has gone thru what I go thru.

I went through the same struggle. Everything deteriorated until I could not risk eating without the possibility of aspiration pneumonia. Had a
PEG tube ( feeding tube ) surgically implanted
last week at the Mayo Rochester. So far things are going OK. GOOD LUCK

Wow thank you so much for responding. I was beginning to feel all alone in this misery.  Yes my first procedure was myotomy with partial fundoication.  (However you spell it). That was horrible. I was burping every 20 min for over a year. Than I had 3 separate dialations. Than surgery 2 was heller myotomy and remove the partial fundo. Now I had 3 endoscopy to remove food log in my LOWER LES. dr said I need another heller myotomy. You mention a new procedure. I'm definitely going to look into it.  They said I need surgery ASAP    

Hello @amoll157,

I'm sorry you are going through so much, but I'm so glad you've found the Connect community. Here is some detailed information about Achalasia, and treatment from Mayo Clinic: http://mayocl.in/2kVYpyf

You may also be interested in connecting with other members in this discussion:
Achalasia of esophagus with reflux: http://mayocl.in/2cfhyny

I'm also tagging past members @dhuffman @ladawki143 @lee28 @sfrigon @klsxoxo @tammyjean @tgirl, with the hope they return with more insight for you.

@amoll157, what foods can you eat comfortably? Has your doctor ever suggested a fundoplication or (according to Mayo Clinic), a newer procedure, called peroral endoscopic myotomy (POEM)?