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Severe Esophageal Dysmotility
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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Have you tried to eat small meals, very small bits and chew them like a hundred times? I recently had a nissen fundoplication surgery and since my esophagus was very swollen, I had to be on a liquid diet for a couple of weeks and then start very slowly and sometimes I did feel that food got stuck in my throat but eating small meals, small bits and chewing many many times really helped..
Try pop rocks if you feel you are choking.
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1 ReactionThanks. I have never heard that
When my mom had difficulty swallowing I prepared scrambled eggs, lean bacon and buttered toast and put it all in a blender . Half the toast worked better as less absorption and more moist .
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?
Survivor of esophageal cancer / esophagectomy etc: 2020
Recently completed chemo & radiation after cancer found in my throats very very close to larynx. Needless to say my poor throat (interior) is burned and pretty sore. Makes it a nightmare to swallow.
I drink either Ensure or cheaper equivalent: Equate (Walmart brand). Although it could taste a bit better it's do'able. Look at all the "good stuff" in an 8 oz bottle. I drink at least 2 / day.
Good luck!!!
Lori
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1 ReactionSounds like dysphagia, I have it, also have esophageal cancer. You should get scans, cat, MRI pet and look into a g tube feeding tube in your stomach so you can get nutrition without irritation of your esophagus. G tube surgery is fast, removable and they are easy to use. I have one. I gravity feed formula, shakes, water… But take this situation seriously. Blessings to you.
I have esophageal dismotility with no peristaltic movement. My diet consist of soft food no fresh fruit or veggies and no bread. I have to drink with my meal and eat small bites and chew thoroughly. If I eat to fast and don't drink with my meal I feel like I'm choking. Several times I ended up in emergency and one of those times I almost died.
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1 ReactionI 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
I've been doing high calorie, high protein, high hydration liquids with my G tube without much issue. If you clog it, take it out, flush and reinsert