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

Interested in more discussions like this? Go to the Digestive Health Support Group.

@choosejoy

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.

Jump to this post

Yes, it's bile as well as stomach acid.

REPLY
@mikaylar

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.

Jump to this post

Thank you for your prayers. I'll pray for you as well.

Cookie

REPLY
@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.

Jump to this post

Never be afraid, I know it’s easier said because, well … hence why I am here myself. (If you haven’t already)
PRAY.

REPLY

Do you have Barrett's esophagus from all the reflux?

REPLY
@riflemanz64

Do you have Barrett's esophagus from all the reflux?

Jump to this post

Yes

REPLY
@zozol

Never be afraid, I know it’s easier said because, well … hence why I am here myself. (If you haven’t already)
PRAY.

Jump to this post

Thank you so much

REPLY

Hi , I also have EGJOO and Gastroparesis since April 2022 and lost 60 pounds. I am going to NYU Hospital in NYC ( Top 5 in the country) in May to ask for a Laproscopic Heller Myotomy(LHM) with fundoication for the GERD. I also have problems with too much GERD. Today I had breakfast and lunch - 1/2 chicken sandwich. I have bloating, acid, gas & nausea so bad I don’t want to eat, as it will make it worse. I am on Dexilant 60 mg, works about 60% of the time. Did you go to Mayo in Jacksonville? I hope they can help. I live in Punta Gorda, Fl and Mayo will not accept my United Healthcare Medicare Advantage Choice PPO., otherwise; I would have gone. Hope you find a solution I had Botox & dilation and it did not help, so I feel like surgery is the answer.

REPLY
@flourface

Hi , I also have EGJOO and Gastroparesis since April 2022 and lost 60 pounds. I am going to NYU Hospital in NYC ( Top 5 in the country) in May to ask for a Laproscopic Heller Myotomy(LHM) with fundoication for the GERD. I also have problems with too much GERD. Today I had breakfast and lunch - 1/2 chicken sandwich. I have bloating, acid, gas & nausea so bad I don’t want to eat, as it will make it worse. I am on Dexilant 60 mg, works about 60% of the time. Did you go to Mayo in Jacksonville? I hope they can help. I live in Punta Gorda, Fl and Mayo will not accept my United Healthcare Medicare Advantage Choice PPO., otherwise; I would have gone. Hope you find a solution I had Botox & dilation and it did not help, so I feel like surgery is the answer.

Jump to this post

Hi, @flourface. Thanks for posting! I'll be seeing a surgeon soon to discuss surgical options as well as esophageal botox injections. Same here with the bloating, gas, and nausea. Dexilant did absolutely nothing to help me. I'm on the waiting list at Mayo Jacksonville. I'm in Orlando, so we're practically neighbors. I'm sorry to hear the botox didn't work for you. I had an endoscopy with balloon dilation about a month ago, and I'm not having as many occurrences of things stuck in my upper esophagus. Not perfect, but I'm happy for any little improvement. Take care, and please stay in touch! ( ^◡^)

REPLY

Hello, I'm really sorry for everything you're going though, I also had gerd for many years and developed barrets esophagus, I'm 8 weeks post op (nissen fundoplication surgery) i suggest to try to research on this surgery, I feel great! And I'm no longer taking any medication for anything. Good luck!

REPLY

I have had difficulty swallowing for years that I tried to ignore but it is so much worse that I had to address it. My GI specialist is in Weston, Fl at Cleveland Clinic. I could not tolerate the manometry test, in fact it was the most terrifying test I have ever had and I had to do it twice. I have MS and Lupus for 23yrs but this has nothing to do with that. It's like my throat goes into spasm and if food, it will get stuck, if fluid will come out my nose. I am rarely hungry because as you said it's like the food doesn't move, yet inevitably within 3-4 hrs after eating anything substantial, the food is coming up or coming out and it makes me not want to eat at all. I tried Nexium which didn't seem to help. Switched to Protonix and not doing much either. It is always in the back of my mind that my Dad died of pancreatic cancer which was atypical and he had no other health issues. While it cannot be confirmed, he had bern on Zantac for 40yrs, and I am convinced that is what caused it, even entered him into the lawsuit. I sleep with my head elevated in fear of aspiration. I just had a procedure which imitates the manometry, but I was asleep, called FLIP imaging (functional lumen imaging probe) which showed GEJ outflow obstruction. It is a new prodedure for that hospital but he said it was extremely helpful. We are going to discuss options, from least invasive to most invasive this week. Botox was discussed many times, but wasn't a fan because it's temporary. I can't continue like this. I have lost weight and can't afford to lose anymore. I know your question was a few months ago, so curious to know if anything is working for you?

REPLY
Please sign in or register to post a reply.