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.

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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Yes I do need a endoscopy done but did have it done in March 2020 & was suppose to go back end of April but the appointment was cancelled because of the virus issue so I have to wait till ?? In 2015 I was diagnosed with dysplasia then with excess saliva in 2017 & got treatment with Botox injections on my face/jaw for the excess saliva But it only got worse & started getting a lot of saliva pouring from mouth since now from the end 2019 . I found out by the internet that the ecophagus got narrowed & not by a doctor with a endoscopy. The vitamins I take is to keep my body strong because I am not young being 82 years old. This problem has also effected my speech too . Cant make any words speaking that anyone can understand… But keep looking forward to get a ecophagus dilation here in Jersey city NJ. Does anyone know where I could get it without any hold ups due this virus. Thanks

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@robertcort

Yes I do need a endoscopy done but did have it done in March 2020 & was suppose to go back end of April but the appointment was cancelled because of the virus issue so I have to wait till ?? In 2015 I was diagnosed with dysplasia then with excess saliva in 2017 & got treatment with Botox injections on my face/jaw for the excess saliva But it only got worse & started getting a lot of saliva pouring from mouth since now from the end 2019 . I found out by the internet that the ecophagus got narrowed & not by a doctor with a endoscopy. The vitamins I take is to keep my body strong because I am not young being 82 years old. This problem has also effected my speech too . Cant make any words speaking that anyone can understand… But keep looking forward to get a ecophagus dilation here in Jersey city NJ. Does anyone know where I could get it without any hold ups due this virus. Thanks

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Hello @robertcort,

I'm glad that you shared a little more about your health history. I also have swallowing issues and extra saliva. I have found that chewing gum can help the extra saliva in that it keeps you swallowing on a regular basis. Have you tried chewing gum?

Also, speech therapy can really help with swallowing issues. Speech therapists have specific exercises that they can teach you which will help with swallowing problems. Have you ever been referred to a speech therapist? If not, I recommend that you ask about getting a referral.

Regarding seeing a doctor sooner, that is hard to say. Most doctors and hospitals have a lot of catching up to do after the rush on medical services for COVID-19. Here is some information about getting an appointment at Mayo Clinic http://mayocl.in/1mtmR63.

In addition, Mayo Clinic has developed a method of self-dilation which might be of interest to you. Here is a video about that procedure,

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Yes I have tried chewing gum it didn't help & took speech therapy too but with speech therapy I could not keep up because of the very hard time trying to speak with all the saliva in my mouth & that was in 2018 but in 2019 the saliva even got worse with the saliva building up in my mouth & stays there & then pours out if I don't cover my mouth with a towel or kitchen paper & trying to speak with a mouthful of water is something else. I have tried mostly because every trick there is but I know that a dilation to the ecophagus is the way. I watched the self dilation video too but don't know to get the dilator…does anyone know here in Jersey city NJ ?? I would try it since I can't get a doctor cause of the virus problem…

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@robertcort

Yes I have tried chewing gum it didn't help & took speech therapy too but with speech therapy I could not keep up because of the very hard time trying to speak with all the saliva in my mouth & that was in 2018 but in 2019 the saliva even got worse with the saliva building up in my mouth & stays there & then pours out if I don't cover my mouth with a towel or kitchen paper & trying to speak with a mouthful of water is something else. I have tried mostly because every trick there is but I know that a dilation to the ecophagus is the way. I watched the self dilation video too but don't know to get the dilator…does anyone know here in Jersey city NJ ?? I would try it since I can't get a doctor cause of the virus problem…

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@robertcort

I am sorry that the gum chewing and the speech therapy did not work for you. You could ask one of your local doctors if they know about the self-dilator. From the video, however, this looks like a Mayo product.

If you need to contact Mayo Clinic about this, here is their information about scheduling an appointment, http://mayocl.in/1mtmR63.

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@astaingegerdm

@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.

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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 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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