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Acid Reflux / GERD Message Board


Acid Reflux / GERD Board Index


I have never been in a situation where there is no reasonable solution. There are only three and for me, none of them is remotely reasonable to the point where I could start snatching myself from this severe depression. Husband is desperate (said he wants a divorce), children know what I am going through and are clearly affected.
All I can think of now is that I could be on my way to die of this horrific disease that sits at the end of the GERD path. My options are:

1. Stay on PPI medication forever (cannot find peace with this, considering the side effects and the recent findings that they actually INCREASE risk of the horrific disease).
2. Do surgery - scary risks, plus the likelihood it will come undone and will leave me with a miserable digestive system.
3. Stay as is, with some frou-frou natural stuff (none of which stops my acid) and just put up with symptoms that I am now highly aware of and therefore able to recogonize in spades.

For a few years after I was diagnosed by a very optimistic, light-hearted doctor - I thought that GERD was a very non-eventful condition, temporarily caused by some unfortunate perfect storm of bad food or medication which goes away after a few weeks of treatment and doesn't come back until another such episode hits, if you're stupid enough to let it happen.

When I came from under the scope the gastro said:
"It looks much better than I thought, just some irritation at the junction, no Barrets, and a HH. You're one of my healthiest patients, go home, finish this course of Dexilant and then take some OTC like Pepcid when needed - have a fantastic life". he made it sound like a walk in the park - and I believed him.
He presented it in such a "no issue" way that I just walked away happy as a lark that anything "bad" was cleared, and thinking I have a mild episode of something "blah-blah" which will go away if I finish my course of treatment.
I did and then I forgot all about it - for 2 years.

I also thought that the HH had nothing to do with the reflux and can just be left to sit there while you're busy having a life.
The dr's leaflet said "it is an unfairly maligned condition". Waow.

Over time, I had apparently learned to tolerate the spasms and lump in throat, chalking it up to my now diagnosed HH which I thought was just making my swallows funky - but otherwise, I assumed all totally benign.

The burn in throat and chest - I kept saying "I think I am coming down with a cold again". The post-nasal drip? Allergies. Had always had them - since I was very young/ a kid almost.

I had not even realized the burn had become my new normal and only when it was really strong I was perceiving it and attributing it to an upcoming cold.

Two years and a half went by - and I recently had another major flair up (in July), after a very stressful period.

This time I read THE TRUTH about this condition and it finally sank.
I have been living under a false sense of security, not being able to understand that this is:
1. CHRONIC - it never really went away and never will.
2. DANGEROUS - with constant threats of Barrets and then the worst of all (can't even type the name)
3. WITH DAILY (ABNORMAL SYMPTOMS THAT MEANS YOU'RE BEING EATEN
BY ACID CONTINUOUSLY.
4. REASON FOR THE FASTEST GROWING CANCER IN THE WESTERN WORLD.

Without meds I have:
1. warmth-to-burn in chest
2. chronically sore throat
3. after each bite of ANY kind of food, including a pill swallowed -a lump in throat automatically forms, food pipe starts feeling like it's about to swell up, food often feels like sticking, not goig down properly or coming back up.
4. Belching, regurgitation about 30 minutes after eating - ALWAYS.

I have done all possible lifestyle modIfications but it is clear I have an LES defect, worsened by the HH. My dr. said "it's the barrier" - and what do you do about that? Nothing. Just counteract the acid. Never mind all the other junk in there that is NOT acid, is not counteracted by meds and could be the culprit for disaster.

What is worse is that all suggestions for natural measures/treatments out there assume that you DON'T have a HH. If you do, well...you're out of luck.

My gastro says mine was small 2 years ago (about 2 cm, I think he may have said that); a recent transnasal endoscopy I had with an ENT (for which I am still waiting the lab results) revealed that the HH was not present at that moment; dr said "I don't see any herniation right now, stomach sits where it's supposed to be but maybe yours is the sliding type".
I confirmed that it had indeed been diagnosed as "sliding" by the gastro 2 years ago. He also said esophagus looked good, maybe a tad bit of esophagitis at the bottom but he'll wait for lab results. So at best, I probably returned to the grade A of 2 years ago.
I asked if he can exclude Barrets at the eye level and he said "I would be surprised if it came like that from the lab". So I could not even get complete clearance and I'm still waiting to hear from the lab if some invisible scary cells are hiding under somewhere.
My gastro said that I would not develop Barrets in two years after I had a negative confirmed by the lab 2 years ago. The ENT did not want to swear..

All this leaves me nowhere.
I have struggled terribly for weeks to find a way out - and I see none acceptable to me. Horrific fear grips me with each and every one of the three options above. My life is upside down. Energy zero - literally.
I drag myself to work just so I can continue to bring some extra money for these kids - I am lucky I only have to go in twice a week but i must also work from home.
I only find peace in sleep. I cry continuously and have moments of sheer panic when I start shivering and screaming. My husband wants me committed, he said, and he thinks most immediately terminally ill people deal much better with their disease than I do with this - which is true but that doesn't make it any easier for me.
I can't eat - I have developed a phobia about putting anything in my mouth because I will feel the burn and the belch rising guaranteed like the sun is rising in the sky every morning. I don't think I take in more than 500 calories a day. I just can't.
I saw a priest today. Husband wants me to see psychiatry but I know they won't have solutions for my actual problem - they will just try to "change my mind about it" and make me think of the chances I won't get the dreaded disease as opposed to the chances I will.
My mind can't operate that way - I am desperate for some sense of reassurance that it won't happen period.
I deal very poorly with uncertainty and "what ifs".
There's not a darn thing they can do for me.

In my worst moments I am thinking to brave surgery, with all risks but then it dawns on my I am looking to make my situation potentially worse if not deadly. Then I also read that Nissen doesn't decrease cancer risk, many still have to take meds - and then wonder what I will solve with this other than misery. Plus both my GP and gastro said "no" to surgery.

All natural interventions (paleo, low fat diet, diaphram breathing, herbals, teas, whatever) seem to work, if at all, for those without a HH.
Then how is this supposed to be a benign condition, as they sell it? This seems to make or break my chances to do anything about this.
I can't take medication long-term because I am afraid I will further affect my kidney function which for whatever reason has had some significant drops over the past couple of years (eGFR dropped from 100 to 70's). Still within normal, but it doesn't look like I have 100% functioning kidneys anymore.

If anyone eventually saw the light naturally WITH a HH - please speak with me.

At this point I have no one left to talk to. Husband refuses to and says I am destroying him and the kids.
Everybody around me wants me to just "get over it", accept it's "just" reflux and maybe even accept that I may die of what I fear so much some day. For them it's "so what?". It's a long time 'til then.
I hate them when they treat me like this. To me, it's one thing to go of a heart stop in your 90's, and it's another to be diagnosed with this horror in your 50's, 60's, 70's???....

I am desperate. Thank you for saying anything.





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