Esophageal disorder - don’t know what to eat

Posted by Cam @tryingtofindanswers, Dec 2, 2018

Hi I’m a 39 year old woman and I’ve got ineffective esophageal motility disorder, with spasms. My manometry showed 90% failed swallows. I can eat certain things like liquid drinks, smoothies, puréed soups and some solid foods like meltable solids such as shortbread cookies, cheetoh puffs, crackers,frozen yogurt, yogurt and basically anything you can give a baby. My doctors have told me there’s nothing they can do for me, that I’ve got to learn to deal and a nutritionist won’t be helpful. Ugh. They’ve been zero help. All they did was put me on Omeprazole and say it won’t get better and just hope it doesn’t get worse. So I’m looking for food ideas from others with this issue. I think from googling on my own I’ve realized maybe I can do mechanical soft, but I’m scared as when this began my swallow reflex would stop when something solid would get stuck and I don’t want to go backwards since I have to work full time and maintain my energy. I’ve been suffering with this for two years and lost a violent amount Of weight at first, so much so that my gall bladder went bad and had it removed in June. Ugh. It’s so hard “living” like this and these food holidays don’t help. Ugh. I’m tired of feeding my body liquid sugar and junk food because it goes down easy. I wish I could just bake a chicken breast and some broccoli. I’ve tried pureeing my food but I wanna vomit with puréed meat. Ugh. Any assistance with ideas for more solid/soft food that goes down for those with esophageal motility disorders would be beyond appreciated. Thank you.

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@megoreilly

I was told yesterday by the head of GI and Esophageal Motility DIsorders at Vanderbilt that there is no cure for esophageal paralysis. Spasms, which I also have, there is some treatment (botox,and a couple of pills) but that too is hard to treat. I have PPI's for GERD, and the long term effects concern me. So, this is very discouraging and I hear her sense of defeat. I am 56 and had an esophageal rupture several years ago, so the nerves were severed and cannot be 're-ignited'. Having doctors say to you 'sorry, nothing much we can do' is very hard to hear.

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@megoreilly - I totally agree. To hear that nothing can be done to treat or improve a quality of life problem is devastating.
With esophageal paralysis there is no nerve function. You have spasms too= there is some nerve function.
I have GERD too and have been on rotating PPIs for years. I know if I don’t take them, reflux with acid will be back- and then I have to worry about Barret’s esophaguses.

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I have exactly the same as you , failed 90% swallows. I have been put on Amitriptyline and azrthmycin and it is improving slowly. I wonder how you are getting on now ? I know this is an old post

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My brother had same issues and saw may specialists from ENT to Gastroenterologists , etc … had many tests . Lived off soup and smoothies and ice cream for 2 years. He’s been put on low dose prednisone recently and it’s helping him as he can handle pasta and veggies cooked well and tiny amounts of bread as long as it’s dipped in a sauce or olive oil. This has been a long journey and it’s not over yet .
I have 7 Gastro issues diagnosed and live in chronic conditions daily and nightly 10 yrs . It’s horrendous. Too much to get into but no one can help me . Best wishes on your journey.

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You definitely need to buy lots of vitamins and put in your smoothies. I think they saved me until I had the Poem.
God bless you!!

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I suffer from aperastalsis of the esophagus as well as achalasia. Ive had a Heller Myotomy but unfortunately I still have issues. My issues is violent burping and hiccuping most of the day and vomiting part of every meal I eat. I even vomit water. Ive been on every type of medication you can think of including anti-anxiety and anti-depressants. Nothing worked. Does anyone else suffer from vomiting. I actually went to Minnesota to the Mayo Clinic and was advised I may have a mental condition that is causing me to swallow air. I was advised to see a therapist and practice diaphragmatic breathing

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