Severe Esophageal Dysmotility

Posted by nicole0325 @nicole0325, Apr 14, 2023

I have had acid reflux and indigestion problems for years. I’ve seen a gastroenterologist for years as well.

I have a genetic problem that I have to go to University of Iowa hospitals, for that is called Ehlers Danlos syndrome. I have a hyper mobility of joints, which there is no cure, but I have along with that a connective tissue disorder, which affects my collagen and healing

I have for the last couple years, felt different as if stuff was getting stuck at the bottom of my back of my throat or bottom of my neck. I would still go to bed a couple hours after I’ve had supper, and would be inclined, and still regurgitate. I can drink liquid and still bend over shortly after and it comes back up.

I have met with the surgeon at the University of Iowa hospitals, and he explained with my issue and having Ehlers-Danlos Syndrome that my risks would outweigh my benefits, and I could be worse off. He said because of my connective tissue disorder that collagen issue would allow me to not heal. I also had an emergency splenectomy years ago and he said I would probably have quite a bit of scar tissue inside, which would be difficult as well to do the surgery. In August I am going to have a device put on my esophagus and I have to wear it for 48 hours to measure the acid in my stomach. He said if that measures extremely high, he may rethink surgery.

After all of this, I’ve said, I guess I’m just wondering what kind of stuff I can eat. I have been drinking meal replacement shakes for the most part. I can eat salad because it’s not hard and crunchy. I eat yogurt. Otherwise I might as well forget meat, and bread of any sort.

If anyone has any ideas of a diet or food that I could eat, please let me know.

Thank you so much

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I was put on a liquid diet after an Esophageal Dilation and I totally understand the frustration of trying to find things to eat. I found potatoes and sweet potatoes to be a good option. I just made sure they were whipped up to a light consistency with no lumps.
I added plenty of milk to regular potatoes and can also make them into a creamy soup.
With the sweet potatoes, I added a little butter and brown
sugar (of course) and made sure to "smooth out in my mouth" when eating to strain out any stringy fibers of the potato.

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@dadsruby8g

I was put on a liquid diet after an Esophageal Dilation and I totally understand the frustration of trying to find things to eat. I found potatoes and sweet potatoes to be a good option. I just made sure they were whipped up to a light consistency with no lumps.
I added plenty of milk to regular potatoes and can also make them into a creamy soup.
With the sweet potatoes, I added a little butter and brown
sugar (of course) and made sure to "smooth out in my mouth" when eating to strain out any stringy fibers of the potato.

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Thank you

Sent from the all new AOL app for iOS

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-kefir
-various soup broths (strain out the solids—at least their nutrients will be in the broth)
-liver paste
-fish paste
-green juices
-healthy smoothies
-mashed squash & sweet potato

A friend of mine bought a recipe book for dysphasia (did I spell that right?) off Amazon, but I haven’t reviewed it yet

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@jwkelly72

I completely understand, I have dysphagia and esophagus cancer. A removeable G tube feeding tube in my stomach fixed the issue. Contact a gastroenterologist and discuss it. You'll do only liquids with it but no mo choking. Have had mine since last early October and my weight is 135 and healthy

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Hello - I also have a g tube because of dysphagia brought on by treatment of cancer in my mouth. How are you removing saliva from your mouth? I use a water pic and rinse with mouth wash but since I can' open my mouth it is an ongoing struggle. Thank you for any suggestions you might have.

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@fiery

I hope I am in the right place. I have dismotility had a manometer test done it came up lack of perastaltis in my esophagus this makes it hard to swallow at times. I have to sit up straight with a pillow behind my back. What helps me is sitting upright in a chair and not laying down for about an hour. I'm only allowed soft diet and liquids. I'm missing salads lol but I'm concerned I'm not getting enough vitamins. Any suggestions on how to get some in my diet?

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One doc said achalasia, and another said 'AC - absent constictivity.
.

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