Esophageal junction outflow obstruction (EGJOO)

Posted by cookierockwell @cookierockwell, Dec 7, 2022

I was recently diagnosed with Esophageal Junction Outflow Obstruction (EGJOO). I was wondering if there was anyone else out there with it.

It's terribly hard for me to eat. I have a bit of breakfast, and a small lunch, and then that's it for the day. Nothing else will 'fit' waiting for everything to go through to my stomach.

I also have esophageal dysmotility, which leaves me with difficulty swallowing, and inhalation of food, pills, and (yuck) stomach acid.

I've also had severe GERD for decades, and at this point, have been prescribed 80mg a day of omeprazole, 40mg a day of famotidine, and 1000mg of alginic acid. Even with all that, I still have to take antacids throughout the day.

I also wonder if anyone else has to take that much omeprazole? I worry about the side effects of the long term use of so much every day, but every gastro I ask about it tells me there's just nothing else I can take. (I have tried all the omeprazole-like meds e.g. pantoprazole etc, as well as Dexilant and Reglan.)

Thanks for reading,
Cookie

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Have you done the swallow testing with barium? I take 40 mgs of omeprazole a day and famotidine. Will get swallow test on the 29th. Get another opinion.

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@mikaylar

Have you done the swallow testing with barium? I take 40 mgs of omeprazole a day and famotidine. Will get swallow test on the 29th. Get another opinion.

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Yes, I've had the barium swallow several times, esophagram, esophageal manometry, all the tests. All the results are abnormal.

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What about diet? Acid-free foods? Soft foods?

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@mikaylar

What about diet? Acid-free foods? Soft foods?

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My diet is extremely limited due to severe GERD.

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Where do you live? Is there a Mayo Clinic or a good hospital near you?

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@mikaylar

Where do you live? Is there a Mayo Clinic or a good hospital near you?

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I'm in Florida, and there's a Mayo in Jacksonville. I'm considering going to there for a consult, but I'm afraid there's not much can be done. I can have a myotomy to open the obstruction so the food will flow down more easily, but that means that the stomach acid will flow upwards more easily. Darned if you do and darned if you don't situation, I'm afraid.

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@cookierockwell

I'm in Florida, and there's a Mayo in Jacksonville. I'm considering going to there for a consult, but I'm afraid there's not much can be done. I can have a myotomy to open the obstruction so the food will flow down more easily, but that means that the stomach acid will flow upwards more easily. Darned if you do and darned if you don't situation, I'm afraid.

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Just go. See what they offer you. You may be surprised.

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@mikaylar

Just go. See what they offer you. You may be surprised.

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Thank you for encouraging me. I just submitted my request for an appointment.

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Cookie,
Is there a chance you could be having bile reflux along with the acid reflux? For me the omeprazole wasn’t working for my reflux so my GI doc prescribed Colesevelam 2x a day and that has worked better. I don’t have a gallbladder anymore so bile reflux made sense.

I do not have the condition you mentioned but I do have dysphasia so have to get my esophagus dilated yearly.

I hope your appointment at Mayo will help you come to a clear conclusion.

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@cookierockwell

Thank you for encouraging me. I just submitted my request for an appointment.

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Most times it takes more energy worrying about something than to just deal with it. And, pain is part of life, especially as we get older. I will pray for you.

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