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Acid Reflux / GERD Message Board

Acid Reflux / GERD Board Index

Please help. I am losing my family, my children and my sanity. I am paralyzed with fear because I just realized this disease is serious, it is chronic, dangerous and not going anywhere without surgery - which itself apparently presents enormous risks, including making things worse than they were before and irreversible.
I have been doing so much reading and research for over a month now....I feel like I am losing my mind. I feel squeezed into a corner, in a complete state of panic with no way out.

I am 43, mother of 2, highly anxious, diagnosed about 2 1/2 years ago after an endoscopy with a small HH (dr. said about 2cm), GERD and esophagitis grade A. I had gone in with complaints of lump in throat, constant belching and some burning in the stomach which I thought had been caused by some antibiotics I had just finished.

I was so terrified of any horrible findings at that time that when the dr. told me what it was (and especially what WASN'T) after I came back from sedation - I said "OK, I will take it".
I had heard of GERD before and I knew it was about reflux; and since I knew just about anyone experiences reflux once in a while and it's mentioned all over the internet and even babies have it, I didn't think it would be the end of the world. The gastro handed me a leaflet that described HH as a condition more maligned than it should be, many people have it, doesn't in itself cause reflux, conclusion "no big deal".

He also handed Dexilant 60 mg, told me to finish it and then use some OTC only when needed. He mentioned briefly that I may even want to look into some food intolerances/allergies - but it was still he who said "it's probably too much of a hassle to keep track of which food causes what".

At that time I thought this was something that would just go away and maybe re-appear occasionally.

Two and a half years passed by with me basically NO LONGER PAYING ATTENTION. At the time of the endoscopy I was just happy I had been cleared of anything horrific. I finished the Dexilant and never did take another round of anything for 2 1/2 years. I remember taking one or two omeprazoles one other time, but that was about it.

Over these past 2 years, I do remember burping after meals, feeling full and feeling a bit of the bolus coming back up right at the esophageal juncture level; but now I knew it had something to do with the mild reflux/HH and I just didn't mind it that much.

I also developed a pain/tenderness right under the left rib cage, exactly where the HH is, but my dr. and the gastro shrugged it. He said it's about "how I sit". I noticed this pain is there on and off. There are periods when I have it and periods when it goes away; and since it is not even noticeable unless I press downwards on my left rib, I also ignored.

Recently I went through a very stressful period at work. Also, a few days after I went a bit too zealous with the "healthy eating" thing, having too many raw foods (including some raw broccoli in a salad) - some scary symptoms began - old ones and some new.

The classical lump in throat, severe belching...but also, for the first time I began to distinguish actual heartburn. When I went 2 1/2 years ago I either didn't have it or was just not able to recognize it. I told the dr. I don't really feel heartburn and he said "maybe you got used to it". I said maybe but I still couldn't really tell. I COULD tell some burn in the stomach which I thought was from antibiotics - but he said no. So maybe that was the heartburn.

But now I can clearly tell it: a warm/fiery sensation emanating from the chest and throat. And it got worse.

I read up in-depth about GERD, knowing I already have the actual diagnosis - so this was more like a long-delayed reaction. I finally understood what this disease is - especially its chronic component. I got beyond scared and now I am severely depressed.

Everything now falls in line with LPR too - have suffered for decades of post-nasal drip (diagnosed as "allergies"), lots of upper-respiratory infections, including a pneumonia bout in 2014 (a year after the GERD dx)...clearing throat - everything.

Went back to gastro - he put me on a PPI again. I told him I am terrified of getting on this medication due to concerns about kidney function (I had a weird loss of function from 100% to about 75-80% in only 2 years - my GP says not concerned) and I don't intend to take it long term under any circumstances.

Based on results from 21/2 years ago, gastro says my GERD is "mild" and that I should just take PPI-s on and off, when needed. I am no longer sure what it means "needed" as I think I have ignored many symptoms over the past two years, and some would have certainly considered them a "need" many times over.

I asked him whether there is a chance I may have caused extra damage over these past two years and whether there could be bad
findings (as in Barrets, never mind worse) on a repeat endoscopy - and he said "naaaah".

Due to my huge anxiety when it comes to health issues, I also saw an ENT for a Transnasal ephagoscopy (TNE). In other words, I will repeat the endoscopy but not sedated, which is what the gastro does.
I am terrified of being sedated and not waking up (as it happened to Joan Rivers) so I knew the only way to get another clearing is through this non-sedated procedure which only SOME ENT-s perform. I was lucky to find one who does it in my area.

I am scheduled to have it next week; but in the meantime, I am in full-blown panic. This is my 7th day on Omeprazole but I know I cannot take this medication for more than 2 weeks.
At this point, my gastro is probably assuming esophagitis is back and wants me on the meds so the inflamation will heal. Apparently esophagitis doesn't heal on its own so I am taking the meds, but this drives me insane, given all the horrible side effects I read about. I am terrified to think what my kidney function would come out now.

Assuming you are not already tired of reading my frantic appeal, I would like to kindly ask some questions and would greatly appreciate any help:

1. Could I have worsened my HH with weight lifting? I had done some of that recently.

2. Does anyone know how a sliding HH actually slides/moves? No Internet source or dr. seems to be able to explain this very clearly. is it possible they don't even know? Does it slide into the chest/esophagus/abobe diaphragm during some periods but not others, or does it go up and down with every swallow?

3. Why do drs. seem so adamant about telling you that a chiropractic for HH is a "waste of time and money"?
If the stomach managed to slide upwards somehow (against gravity), wouldn't be at least minimally reasonable to believe that repeated actions that work WITH gravity could have at least some effect over time?

4. Can everyone feel/identify their reflux when a reflux episode happens - (assuming you pay attention, not when absent).
I do notice them but I wonder whether there may be small refluxes in between that are not perceptible to our senses.

I read that a certain number of refluxes is normal in healthy individuals.
I read around 40-50 in 24hours. That sounds like a lot.
Based on the ones I count during the day, I certainly don't detect that many. Most are very soon after meals -I feel a bit of the food coming back up. I drink a bit of water to get it back down.

So based on the number I am able to perceive/feel coming up from stomach, I would still fit within the "normal" range - but obviously the symptoms and the grade A esophagitis of 2 1/2 years ago beg to differ.

I have no idea what happens at night because a reflux never woke me up.
I read people become awake by their night refluxes. My husband once awoke with bad reflux in the middle of the night really abruptly, choking, not being able to breathe - but he is not diagnosed with GERD.
I never had that. When I wake up in the morning, there's no heartburn, no bitter or sour taste, no burning throat - things seem fine. But then they get worse as the day goes by and as I start to eat.
I do regularly wake up with dry/cotton mouth (I always have), due to breathing through the mouth at night. But that doesn't sound like reflux to me.

5. My dr. says the problems is caused by a weakened reflux barrier / LES sphincter. There seems to be consensus that nothing can be done to strengthen the LES but some legitimate studies are emerging showing that abdominal breathing / IMT (inspiratory muscle training) CAN strengthen the reflux barrier, by working the diaphragm.
It also appears that doing deep breathing at post-prandial times may reduce those transient/random openings of the LES.
I tried and vaguely, I think there is some worth to this.
Why do doctors don't mention such things at all? They just give you these PPI poisons and whatever happens later because of them is no longer their business.

Over the past couple of weeks I have returned to all lifestyle measures which admittedly, I had only adhered to briefly after my initial diagnosis.
Over time, I took out the sleeping wedge (which felt uncomfortable, was sliding off of it) and had allowed the portion size to get back to regular.

6. How large is a GERD meal supposed to be (at one time seating). Everyone says "eat 5-6 smaller meals" but what is "small"? The size of my fist at one seating?
I have been losing too much weight too fast over the past 2 weeks of struggling with this. I can't keep eating like a bird.

7. I am desperate and thinking of surgery bc I don't want to stay on meds for the rest of my life. My gastro says "no, it has a high failure rate and can make problems worse". That scares me beyond belief.

If you have an answer to any of these questions - thank you so much!

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