My EsophyX procedure..9 days post-op

[iva]

Hi DTanna,

haven`t heard from you for 2 months and I`m wondering how are u doing? Are u ok, do u have any reflux symptoms?

[DTanna]

I think you are making the right choice.

[soliver38]

DTanna

well i am very happy that things goes well for you
this time u did it finally.and u will get full recovery.....anyway...i was considering to go under esophyx but ur experience as well as Iva and the others make me change my mind
i will goiuder nissen soon..hope u very fast healing and gud luck....keep us informed about hw ur doing

[DTanna]

What's goin on Iva, Travis, the Board,etc?? I hope everyone is doing well. I just returned home to NC a few days ago after giving myself ample time heal. I stayed in Pittsburgh for about as long as I could in case any problems came up. I cannot keep making trips up there, so I wanted to be very confident that all was well before I came back. I am afraid to jinx myself, but I have been feeling so much better lately. For the last couple of weeks, I still have some post surgery issues but am not having any acid related issues at all. i have no chest pains like before, no more bad taste in my mouth, no regurgitation after meals, no more hoarse voice in the morning and no more heartburn!! This is the first time in like 15 years that I have not been on any PPIs for over a month.

I am definitely not back to 100% yet so I don't know exactly where I will end up after all is said and done. I am 4 1/2 weeks post-op so I know that significant changes can still occur, but it is all very encouraging so far. I still have some issues if I accidentally drink too much too fast. I have been uber-conservative with my eating still. I am adding more solids but have been keeping my meals sizes very, very small. Still drinking hot tea all day long which makes the insides feel better...and tricks me into feeling full as an added bonus. My stomach is still adjusting and can feel pretty rough at times. I wouldn't mind one bit if that continues to improve over time.

Overall, I am totally happy where I am at with things right now. Signs so far are that I have had a good outcome with the surgery. I haven't had any problem getting food down and nothing is coming back up. Sometimes I wonder why I am not being more aggressive with my eating because no foods have given me trouble yet, but I would rather be cautious a bit longer. The difference in this recovery, compared to the last failed recovery, is very obvious and very encouraging.

>>Iva.....have you ever heard back from your esophyx doctor? I cannot believe that he and his staff would not have the decency to return your attempts to contact him. That amazes me!! That leads me to think you are not the only person trying to contact them with issues. I truly hope that you get in touch with good people and get some help.

>>DutchGirl...where/how you been? Have you found out any new info on your post esophyx fundo? I hope you get everything straightened out too. It is soooo nice to finally have some hope and to be feeling better.

[soliver38]

Iva

[QUOTE=iva;60480]Hi soliver38,

thank you for the interest. 5 months after the Esophyx still feeling acid in my mouth as if I`ve never been through this procedure....
Did u decide to have sugery?

hello iva. ur answer didnt encourage me i donno wich procedure ill have esophyx or nissen...i wonder why u still feel like that?wht says the Doctors?
try to tell them about that......thank you

[iva]

Hi soliver38,

thank you for the interest. 5 months after the Esophyx still feeling acid in my mouth as if I`ve never been through this procedure....
Did u decide to have sugery?

DTanna, how are u doing?

[soliver38]

Iva

hw are you.longtimes we didnt hear about you.r u feeling better now.or still suffering from acid.plse keep us informed about hw u doing?

[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.

[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 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]

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

[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]

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]

Iva

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

[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!