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.

I feel your pain. I, too, have a swallowing disorder, though they don't know why. I have Laryngospasms and benign multinodule (5) goiter on my thyroid. Lost my gall bladder years ago. Have mesh implants from 5 lb. Messenteric abdominal cyst removal and ventral hernia that followed and have had a nissen fundoplication and a toupet fundoplication… which is to connect my esphogus and my stomach. Last surgeries at the end of 2016. Now deal with worse dysphagia, dumping syndrome and positonal pains. Now have intestines pushing up into chest area.
For the 3 years I have been on a semi solid diet. Mostly the things you mentioned… Nilla wafers dissolve in your mouth and are easy to swallow. Also just found liquid greens… veggies. Not too bad. But sometimes I choke on air… so food isn't always the enemy. I, too, struggle to find some more items to eat again, but slowly realizing I may be stuck with what I have found. Swallowing pizza is impossible. I have lost around 97 lbs. and am in need of more nourishment but protein drinks make me ill, too. It sucks. I hate my food life. I hurt all over. Being skinny is NOT fun. It hurts. I walk through the grocery store like a zombie… no, no, no… I cant swallow that or digest that. BUT… There is a new product I tried… though it tastes not great, yucky actually, but you might like it… it is good for you totally. It's called Huel. A powder. Nutritionally complete food. 500 calories per cup. Jazz it up and drink it or use powder in your pudding or soups. And the meats I do eat… I cut into teeny tiny portions and then chew the heck out of them. Puree… agreed… barf! I am rooting for you! Post if you find something good… I will try it too! I am 57 & female, by the way. My thoughts are with you. I didn't get much sympathy or help from my surgeons, either. Learned most on internet unfortunately.

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If you have problems with a narrowing of the esophagus you might find this discussion by Mayo Dr. Magnus Halland interesting.
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/esophageal-self-dilation-therapy-an-effective-alternative/

Liked by penn1023

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@sickvick

I feel your pain. I, too, have a swallowing disorder, though they don't know why. I have Laryngospasms and benign multinodule (5) goiter on my thyroid. Lost my gall bladder years ago. Have mesh implants from 5 lb. Messenteric abdominal cyst removal and ventral hernia that followed and have had a nissen fundoplication and a toupet fundoplication… which is to connect my esphogus and my stomach. Last surgeries at the end of 2016. Now deal with worse dysphagia, dumping syndrome and positonal pains. Now have intestines pushing up into chest area.
For the 3 years I have been on a semi solid diet. Mostly the things you mentioned… Nilla wafers dissolve in your mouth and are easy to swallow. Also just found liquid greens… veggies. Not too bad. But sometimes I choke on air… so food isn't always the enemy. I, too, struggle to find some more items to eat again, but slowly realizing I may be stuck with what I have found. Swallowing pizza is impossible. I have lost around 97 lbs. and am in need of more nourishment but protein drinks make me ill, too. It sucks. I hate my food life. I hurt all over. Being skinny is NOT fun. It hurts. I walk through the grocery store like a zombie… no, no, no… I cant swallow that or digest that. BUT… There is a new product I tried… though it tastes not great, yucky actually, but you might like it… it is good for you totally. It's called Huel. A powder. Nutritionally complete food. 500 calories per cup. Jazz it up and drink it or use powder in your pudding or soups. And the meats I do eat… I cut into teeny tiny portions and then chew the heck out of them. Puree… agreed… barf! I am rooting for you! Post if you find something good… I will try it too! I am 57 & female, by the way. My thoughts are with you. I didn't get much sympathy or help from my surgeons, either. Learned most on internet unfortunately.

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Hi, I am 83 years young and have had problems swallowing and severe Esophagus spasms since I was in my mid twenties . Now for the past several years it has gotten worse and was twice at the emergency hospital because my food was stuck from top to bottom . Just had an Endoscopy and was diagnosed with Candida Esophagus and Achalasia . It was recommended to have a Mobility study done, but from what I read there is no cure for it. Maybe some surgery for younger patients , which I am not .I also suffer from Gerd . What I am doing now is to avoid meat because it's the biggest problem and if I eat some very tender ground meat, I chew and chew it to a pulp and drink water after every bite. I had to learn to concentrate on every bite . My Esophagus spasms are less since the doctor prescribed a heavy dose of anti acid medication daily . My son , 60 years of age is starting to have the same problems . Maybe genetic .

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@pumpsi – You found the right place to maybe learn more about your esophagus problems- welcome to Connect! As you may have seen, your post is in a thread with different esophageal issues. It must be very frustrating just to eat.
First of all, let’s not assume there is no cure, but there may be new methods to alleviate the process of swallowing. Therefore, it may be a good idea to go ahead with a motility study. Are you being treated for the Candida? I have had Candida esophagitis and it is very uncomfortable. I also know what it feels like to have esophageal spasms- panic! I had it for a while after surgery but not since.
I hope your son gets treatment too.

Liked by Lisa Lucier

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I have esophageal dysmotility and silent reflux and a problem with the back of my tongue movement. A speech therapist gave me some exercises (which I can't remember) that did help at first.

The worst food in the early stages was bread. But now it's a really slow process to eat or drink anything. The other day I timed how long it took for me to start chewing a quarter inch square of a shortbread cookie, ending when I felt it move out of my esophagus into my stomach. It took 45 seconds to eat that miniscule bit of cookie.

As others have said, I have to chew everything into puree and swallow just a little at a time. It takes so long to get through a meal that I find I'm eating less because I'm tired from the chewing.

Liquid wasn't a problem until a month ago. Now I drink a sip, hold it in my mouth, tuck in my chin and then finally swallow. Those are the directions from the speech therapist. No straws because it propels the liquid to the back of the mouth too quickly. No carbonated drinks. I do drink a glass of pop when I'm in a restaurant.

Lately I've been sensing a feeling of fullness, not in my stomach but higher up, after eating only a small amount of food. I'm not sure what that is. I've had two swallowing tests, but it was more than a year ago. Maybe it's time for another.

I have small fiber idiopathic polyneuropathy and the beginning of autonomic neuropathy, so it's often hard to diagnose things because of the comorbidity. Neuropathy could be involved with several other issues I have – diplopia, dysphagia, reflux, tinnitus, urinary problems, loss of sensation in my cheeks, fingertips and so on, all the way down to my toes.

I also use a fair amount of liquid to help with the complete swallowing, but sometimes it just makes it worse.

My sister had serious swallowing problems and eventually had to have a feeding tube, and after seeing many, many specialists at Stanford and other good facilities, never was able to get a diagnosis, and gradually lost more weight and strength and died in her 50's. So, I tend to take things like this seriously because of how hard it was to watch her waste away. I admit to being a bit paranoid and OCD.

Before the swallowing problem started, I had been in therapy for several years for depression, anxiety, PTSD and suicidal ideation and attempts. So every time another issue arises, it affects my mental health. And of course it's cyclical.

Sorry to go on so long. I would welcome any ideas or suggestions.

Jim

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@kaforester3

I have had some issues with my esophagus for the past 7 1/2 months. I had recently got diagnosed with Crohn’s and finally got some medicine for it. I had been dealing with GI issues for 3 years. They put me on Protonix, Pepcid twice a day; and Carafate in January of last year because they thought that would help with the GI issues and pain in my right side.

In August they went to do a EGD and they couldn’t because my esophagus was too narrow. I went for a swallow test and it showed a hernia and an Esophageal web. Well since then I have had 4 dilations and now it’s hard to swallow even liquids sometimes. I have also started having excessive saliva in my mouth.

Has anyone ever been through this? I have an appointment at the Mayo Clinic in April but I’m just afraid that it’s going to be like my other appointments and they find nothing wrong.

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@kaforester3 – Welcome to Mayo Clinic Connect!
You have had to deal with a lot of new health issues and diagnosis lately. I don’t know much about esophageal webs, but I understand the dilations. I am feeling positive about your Mayo visit- something will be done. Before this visit maybe you should talk to your local doctors about your swallowing difficulties. Please stay in touch.

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@kaforester3

I have had some issues with my esophagus for the past 7 1/2 months. I had recently got diagnosed with Crohn’s and finally got some medicine for it. I had been dealing with GI issues for 3 years. They put me on Protonix, Pepcid twice a day; and Carafate in January of last year because they thought that would help with the GI issues and pain in my right side.

In August they went to do a EGD and they couldn’t because my esophagus was too narrow. I went for a swallow test and it showed a hernia and an Esophageal web. Well since then I have had 4 dilations and now it’s hard to swallow even liquids sometimes. I have also started having excessive saliva in my mouth.

Has anyone ever been through this? I have an appointment at the Mayo Clinic in April but I’m just afraid that it’s going to be like my other appointments and they find nothing wrong.

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I certainly empathize with your fear,; however, once you get there and meet your MD you will have this feeling of “ finally, there is help”. The gastroenterology dept has all experts on staff—very little they have not managed.

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I have had some issues with my esophagus for the past 7 1/2 months. I had recently got diagnosed with Crohn’s and finally got some medicine for it. I had been dealing with GI issues for 3 years. They put me on Protonix, Pepcid twice a day; and Carafate in January of last year because they thought that would help with the GI issues and pain in my right side.

In August they went to do a EGD and they couldn’t because my esophagus was too narrow. I went for a swallow test and it showed a hernia and an Esophageal web. Well since then I have had 4 dilations and now it’s hard to swallow even liquids sometimes. I have also started having excessive saliva in my mouth.

Has anyone ever been through this? I have an appointment at the Mayo Clinic in April but I’m just afraid that it’s going to be like my other appointments and they find nothing wrong.

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@astaingegerdm

@kaforester3 – Welcome to Mayo Clinic Connect!
You have had to deal with a lot of new health issues and diagnosis lately. I don’t know much about esophageal webs, but I understand the dilations. I am feeling positive about your Mayo visit- something will be done. Before this visit maybe you should talk to your local doctors about your swallowing difficulties. Please stay in touch.

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I just saw my local GI doctor today and he said that he’s confused about the swallowing issues and doesn’t think that I have Crohn’s or GERD now. I just started seeing him for a little over a month now and he’s saying the last doctors were wrong and I should stop taking the Apriso, Pepcid, and protonix.
He is also sending me for another swallow test and hopefully we get some answers from that.

I almost just want to wait and see what the Mayo Clinic thinks before getting off the medicine and having another test done.

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@kaforester3 – thanks for the update! I agree- it sounds very confusing. I understand that you hesitate to stop the meds. Since you have the Mayo appointment in April you could just stay on the meds. You can still have the swallow test- and bring the result with you. Of course, I don’t know why your local GI says you don’t have Crohn's or GERD

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Have no fear about Mayo. Last year they saw a million patients —so I safely assume they have an answer. In addition their research is veryprogressive

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Have you been to a Mayo? There are a variety of surgeries. I take Levsin when have spasm and it will relax esophagus. How anxious do you get when some upon solid to swallow. Take any meds for anxiety? Sounds very difficult, consider popsicles etc. soft casserole

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Hi name Robert..I understand ..I have a problem too with swallowing meats & cookies etc that dose not go down easy but also stops at a certain point I wind up choking & try to clear it by intense coughing . What I do eat a lot of mainly instant oatmeal with hot water & then add the following.. banana frozen fruit. Whey protein powder. Table spoon peanut butter half spoon boric soda then add two spoon of milk & then place the bowel in the microwave for one minute & 25 seconds so it all mixes up good. Also I do have lots of vitamins ..vitamin D3 B12. Folic acid. .also acid reflux & joint health pills. I do also take two tabelspoon of honey every day plus pure CBD oil that is a Cannabis oil . I don't eat any red meat or chicken just canned tuna & makeral fish & boiled eggs for the protein in eggs. But do indulge with soft ice creams. Cake & Coffee. Hope This Helps.

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You need to go and be evaluated by MD! You need an endoscopy. All those vitamins and supplements are not going affect you trouble swallowing.

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@robertcort

Hi name Robert..I understand ..I have a problem too with swallowing meats & cookies etc that dose not go down easy but also stops at a certain point I wind up choking & try to clear it by intense coughing . What I do eat a lot of mainly instant oatmeal with hot water & then add the following.. banana frozen fruit. Whey protein powder. Table spoon peanut butter half spoon boric soda then add two spoon of milk & then place the bowel in the microwave for one minute & 25 seconds so it all mixes up good. Also I do have lots of vitamins ..vitamin D3 B12. Folic acid. .also acid reflux & joint health pills. I do also take two tabelspoon of honey every day plus pure CBD oil that is a Cannabis oil . I don't eat any red meat or chicken just canned tuna & makeral fish & boiled eggs for the protein in eggs. But do indulge with soft ice creams. Cake & Coffee. Hope This Helps.

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Hello @robertcort and welcome to Mayo Connect.

It sounds like you do understand about swallowing difficulties. Like most of us with swallowing problems, you have developed a soft diet which probably makes swallowing much easier. You do not mention the basis for your swallowing difficulties. Perhaps it is related to the esophagus? I'm wondering what treatments, other than the soft diet, you have had for this problem.

If you are comfortable sharing more could you share what your diagnosis is and how long you have had this problem?

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