My EsophyX procedure..9 days post-op

[dutch girl]

Hey DTanna,

i am so happy for you that everything went well
i talked to lots of people and most of them said the nissen was easier than the Esophyx,i am so happy that you got rit of it


please keep me posted about your progres.

[Kevin]

That's great!

[DTanna]

Thanks for all of the well wishes. I will let you all know how it goes. Have some pain throught the shoulders today...especially with deep breaths...but no big deal.

How have things been going for you Iva....is it still working out pretty well for you??

[iva]

Hey, DTanna

esophyx isn`t working for me at all, because I still feel acid in my mouth and the other symptoms persist, but I have no spare cash (I had to pay for the esophyx from my pocket) to do the tests and get the official proof for the failure..

[soliver38]

Iva

Hey, DTanna

esophyx isn`t working for me at all, because I still feel acid in my mouth and the other symptoms persist, but I have no spare cash (I had to pay for the esophyx from my pocket) to do the tests and get the official proof for the failure..

why esophys didnt work for you?who did it DR lobontieu?why u dnt refere to him and see why it didnt work?i wanted to go under esophyx but ur case and some others made me reticent i might change my mind for nissen,gud luck iva

[dutch girl]

Hi DTanna,

Two weeks post op today and how are you feeling??

[DTanna]

Hey there dutch girl!! I hope things have been going well for you and everyone on the board. It has been a tough couple of weeks here, but things are getting better every day now. I am still surprised at how the recovery was in the hospital compared to the esophyx. I thought both would be much worse than they ended up being. I think the air they fill your stomach with during the esophyx procedure was the difference. It wasn't painful...but very uncomfortable having all of that air pressuring against the surgery that was just done. I expected that feeling again in recovery, and was very happy when it wasn't there. The recovery hasn't been a bundle of laughs..but I still think it was much easier than I expected.

There were a few days when I was very worried. I had that awful taste in my mouth again..and some of my morning Ensure ended up back in my mouth. It felt like what I went through while the esophyx was failing. I was really very worried. But things have since calmed down...the bad taste is gone...no more Ensure in my mouth...and I am feeling very positive about things. Because of my last experience, I think I was almost expecting things to go wrong which is not usually like me. Not any more though...things are feeling WAY better!! I know it takes a good bit of time for the body to adjust and for swelling to go down after a Nissen so things could change...but right now it is all good. Looking back does zero good...but I will anyways for a minute...I just wish I would have done this in the first place.

For the first time in a LONG time I am thinking there may be an end to what Kevin termed my "medical odyssey"!!!

[iva]

SOliver, good luck to u too! Yes, dr.Lobontiu made the surgery but I tried to refer to his team in order to ask why the op hadn`t worked for me. They did not reply at all... So I am on my own regarding the post op period.

DTanna, hope this will be the end of ur odyssey!! Pls, do not let yourself feel very comfortable until u have waited long enough - at leats 4 weeks I think (until the swelling is gone)! Good luck with ur recovery!

[soliver38]

Iva

tnxs for ur reply.i hope things change and u will feel better...keep us informed about ur decision.

[Travis]

DTanna -

How are you doing? I recently read all of your posts and found myself drawn to your story.

Hope all is well

Travis

[soliver38]

Travis

DTanna -

How are you doing? I recently read all of your posts and found myself drawn to your story.

Hope all is well

Travis

hello.i saw ur reply n here.r u suffering from <GERD>.u can share with us ur experience.it would be benefic for all of us

[Travis]

Sure. My history is long.

I remember constantly getting food stuck in my throat back when I was in grammar school. I am 32 now. I used to have to stick my finger down my throat to get the obstruction out via vomitting. I had my esophagus stretched when I was 14 or 15. After that I had occasions where I would get food stuck, usually meat, where I had to have endoscopies performed. 5 in total I believe. That was the extent of my problems.

Then around 25 or 26 I started getting more symptoms of GERD or Reflux. Constant mucous, clearing of the throat. Shortness of breath at times.

Right around 29/30 is when it got real bad. Severe pains in the chest and back. On two occasions I was rushed to the ER for an apparent heart attack and trouble breathing. I realize now it was my first encounter with severe GERD. Since then I always have thick mucous in my throat. I have pains from time to time in the chest, back and stomach. Although the pains are less frequent these days. Then I started getting a constant cough about a month ago. That finally stopped. And now, all of a sudden, I have very dry mouth, a metallic taste and a burning sensation in my mouth and throat. Those last symptoms have been the most annoying since they are constant. It has been almost 2 weeks now with no progress towards recovery.

I have been on Prevacid 60 mg for years now. I avoid all sodas and with the exception of one cup of coffee in the morning, I avoid all caffeine. I do not eat spicy foods and my diet is no very restrictive. I dont eat anything after 9:00pm anymore if I go to bed at 11:00pm.

I have seen so many doctors it is mindnumbing. I have had almost every test to confirm that I do suffer from this disease.

While I have good days and bad days with the disease - it seems that when I overcome one problem - another comes along. It just gets hard to conjure up the faith and motivation to keep fighting over and over and over again.

I have decided that I may need to pursue an operation to help me. It is a difficult thing to do. As I have read so many stories where things went wrong and only exasperated their conditions.

I am also a very active person - and I fear that heavy lifting or exercise may rip or tear any procedure I have in the long run.

Has anyone found success in operations?

Travis

[Kevin]

I had food obstructions in my esophagus from ages 10 to 21 when I was dilated. Back then eosinophilic esophagitis was virtually unknown. When I was at an academic medical center recently, a researcher on the disease said that food impactions in a young man are highly suggestive of EE.

Have you been evaluated for it? Do you have known allergies (possible, but not necessary for EE)?

PPIs do not help this disease very much, although if reflux coexists with EE, the results can be excruciating.

I have not been officially diagnosed with it. Since I use an asthma inhaler with fluticasone, my esophagus may have been clear of eosinophils for the biopsy. Eosinophil counts fluctuate a lot, and sometimes they are absent.

The upshot is that you should probably be evaluated for food allergy. Often, however, EE is associated with delayed food response, which is hard to test for.

My guess is that an operation will not help you if you do have allergic esophagitis, which can certainly provoke asthma, severe chest pain, spasms, etc.

Sure. My history is long.

I remember constantly getting food stuck in my throat back when I was in grammar school. I am 32 now. I used to have to stick my finger down my throat to get the obstruction out via vomitting. I had my esophagus stretched when I was 14 or 15. After that I had occasions where I would get food stuck, usually meat, where I had to have endoscopies performed. 5 in total I believe. That was the extent of my problems.

Then around 25 or 26 I started getting more symptoms of GERD or Reflux. Constant mucous, clearing of the throat. Shortness of breath at times.

Right around 29/30 is when it got real bad. Severe pains in the chest and back. On two occasions I was rushed to the ER for an apparent heart attack and trouble breathing. I realize now it was my first encounter with severe GERD. Since then I always have thick mucous in my throat. I have pains from time to time in the chest, back and stomach. Although the pains are less frequent these days. Then I started getting a constant cough about a month ago. That finally stopped. And now, all of a sudden, I have very dry mouth, a metallic taste and a burning sensation in my mouth and throat. Those last symptoms have been the most annoying since they are constant. It has been almost 2 weeks now with no progress towards recovery.

I have been on Prevacid 60 mg for years now. I avoid all sodas and with the exception of one cup of coffee in the morning, I avoid all caffeine. I do not eat spicy foods and my diet is no very restrictive. I dont eat anything after 9:00pm anymore if I go to bed at 11:00pm.

I have seen so many doctors it is mindnumbing. I have had almost every test to confirm that I do suffer from this disease.

While I have good days and bad days with the disease - it seems that when I overcome one problem - another comes along. It just gets hard to conjure up the faith and motivation to keep fighting over and over and over again.

I have decided that I may need to pursue an operation to help me. It is a difficult thing to do. As I have read so many stories where things went wrong and only exasperated their conditions.

I am also a very active person - and I fear that heavy lifting or exercise may rip or tear any procedure I have in the long run.

Has anyone found success in operations?

Travis

[Travis]

Hi Kevin -

I am almost positive that I do have EE. And yes I was tested for allergies to both food and natural environmentals. I believe what came back was that I was allergic to several nuts, dust, cats and most trees and weeds.

I can usually put up with the thick mucous and occasional bouts with chest and stomach pain. But this latest onset of the persistent dry mouth and metallic taste in my mouth is awful.

[Kevin]

I had a burning tongue and mouth for several months until I stopped eating eggs, to which I found out I'm allergic. It is possible that you have an unidentified food allergy--a delayed type, especially, can cause a burning mouth. If you are multiply sensitized, as it appears you are, then this seems like worth investigating. Also note that if you are allergic to peanuts, you may also have trouble with soy, peas, and other legumes. If you are allergic to birch, you may have trouble with 'oral allergy' syndrome for a number of fruits (google birch allergy and 'cross-reactivity'). Tree nuts cross react with each other. You may well have an allergy to another common food. Testing is not always reliable, so dietary manipulation, though difficult, can work wonders. Look up hypoallergenic diets.

PPIs may make things worse for people like us--there is some evidence that they promote food allergies by allowing proteins to get through the stomach intact. This is not to say that you should stop ppi therapy. On the other hand, I found that once I identified my food allergies, I was able to drop from Nexium 40 mg twice a day down to one Omeprazole OTC 20mg once a day. I don't think the ppi was doing me much good. I plan to taper further at some point and perhaps come all the way off.

Mild or normal reflux occurring on top of an inflamed, allergic esophagus also is a plausible scenario--what would not bother most people might be extremely painful for you due to allergic inflammation, so playing with ppi-dose and food avoidance therapy might be something to talk to your doctor about. Unfortunately, most GI docs know nothing about food allergy.

There is a formula that works well for me called GI cocktail. It has lidocaine in it, which can numb a sore mouth and esophagus. Alternatively, I have also used tooth pain medication (Anbesol, Orajel) to rub in my mouth when it burns (not very often these days--only when I give in and have something with eggs in it). Sometimes sore throat sprays help.

Hi Kevin -

I am almost positive that I do have EE. And yes I was tested for allergies to both food and natural environmentals. I believe what came back was that I was allergic to several nuts, dust, cats and most trees and weeds.

I can usually put up with the thick mucous and occasional bouts with chest and stomach pain. But this latest onset of the persistent dry mouth and metallic taste in my mouth is awful.