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refractory gerd - in real trouble here

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Old 08-06-2012, 12:45 AM   #1
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refractory gerd - in real trouble here

For 15+ years my chronic daily GERD was under control with 20mg prilosec a day. It was a miracle for me and had my symptoms 95% under control.

Unfortunately 2 years ago I started getting symptoms again. Virtually constant heartburn sensations, and pain right below my sternum. Soon after I had an endoscopy which looked ok. Docs had me try some different PPI's, and I ended up on Dexilant 60 mg/day, but nothing is really working anymore to stop the pain & burning.

The docs feel the PPIs are still working to stop the acid, and protect my esophagus from erosions etc, but that maybe I've just got a sensitive esophagus now, and that all that's left really is to "manage the symptoms" as best we can. They've got me trying a low-dose anti-depressent & sulcrafate, which seem to be doing nothing.

They are dubious on having surgery in my case, I think because of my clean endoscopy, lack of "atypical" symptoms like regurgitation, and current lack of symptom relief from PPIs (which I guess is a predictor of a possibly unsatisfactory result from surgery).

I'm getting desperate and freaked out as I've been feeling virually constant heartburn symptoms for over two years now and it's I feel myself unravelling - it's just intolerable. Imagine having a 2-year long reflux episode.

I've tried acupuncture & melatonin and some other supplements but nothing is working. What am I to do?

thanks for any help

Last edited by Administrator; 08-11-2012 at 10:19 AM.

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Old 08-06-2012, 03:54 PM   #2
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Re: refractory gerd - in real trouble here

I understand your pain. I took PPI's successfully for several years, stopped for two years due to my fear of side effects, and found out the PPI's no longer stopped the heartburn for me when I attempted to get back on them. I tried several and none have been very effective.

When I took PPI's I found that I could eat and drink almost everything and anything with little heartburn. Now that I take an H2 blocker (Zantac), it is much more difficult for me to "cheat."

Everyone has triggers. Mine are chocolate, caffeine, herbal teas, bananas, tomato sauce, yogurt, lots of carbs all at once, i.e., a big sphaghetti dinner, red wine, etc. Even some foods that are typically healthy, I cannot tolerate. As long as I avoid those triggers, I can control my heartburn with the H2 blocker and eating smaller meals. I get in trouble when I "cheat."

I don't know if you have yet to look at dietary changes, but diet greatly influences my daily experience with heartburn or lack of it thereof. I too relied on the PPI, and led an entirely "normal" and heartburn free life for two years until that came to an end.

You may be able to eventually find a PPI that works, or may need to look at lifestyle changes. But diet is a big culprit in coaxing the stomach to produce extra acid, which in turns produces heartburn.

Surgery does not always work for everyone and sometimes causes other problems. Although you may eventually go that route if nothing else works, it should be your last resort.

This has been my experience. Hope others chime in with theirs.

Hope you feel better soon.


Old 08-09-2012, 01:32 PM   #3
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Re: refractory gerd - in real trouble here

Thanks for responding back Rose, I feel not quite so alone knowing there are others battling this. The dietary element is a big mystery to me. So far I have never really found a connection. I did notice that cutting back on carbs/sugar seemed to help a bit, but it's not like I have the kind of easily identifyable food-triggered episodes. My symptoms just seem to always be there, ever since some twenty years ago, on a daily basis, often thru the nite and awaking with them in the morning, regardless of what I eat.

I've come to think that I just have some kind of nervous system malfunction that keeps that valve popping open all the time. (Interestingly a test I had done some years ago showed that my resting LES pressure ias actually on the high side.)

Once I was helped by acupuncture, which seemed to support this idea (although I was never able to repeat that success). I also have horrible so-called IBS which also seems not related to diet or anything else I can identify. I think whatever nervous system failure is causing my upper GI valves to pop open is also causing my lower GI peristalsis to go haywire. I was thinking maybe some other technique like yoga or even tai chi or something might help regulate this some.

I don't really know what to do except maybe find a pain clinic or psychiatrist to help me live with the pain & discomfort. It seems like with the exception of surgery I'm pretty much out of options, and I agree with you that it would have to be a last resort and might not help much or even make things worse in my case. I may just try to hang on and "white-knuckle" it out as long as i can, hoping that maybe a new drug and/or procedure will come along to help me.

Thank you again for the comforting words and thoughtful advice.

Old 08-09-2012, 06:54 PM   #4
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Re: refractory gerd - in real trouble here

I know this GERD can cause one to become very depressed due to it's "non-stop symptons" and "its always there" kind of feeling... I dont know if GERD can be cured (in TCM they say yes but Western says no but can be controlled)

Diet plays an important role. Dont eat too much carbo, sugar. Do you drink alot of water at night? Thats a no-no.

Old 08-11-2012, 09:43 AM   #5
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Re: refractory gerd - in real trouble here

I have been dealing with this issue and the constant and recurring pain associated with it for many years. The problem became so serious that an endoscopy revealed that I had Barretts Syndrome which is a precancerous condition in the esophagus from the effect of stomach acids being constantly in contact with the esophagus lining and ulcerating it (and I have the pictures to prove it - LOL). The medicos prescribed a surgical procedure called Nison Fundoplasty (NFP) which involves pulling the stomach up towards the diaphragm and tying it together to assist the muscle between the stomach and the esophagus to do its job of keeping them separate.

Once that surgical procedure was done (Feb 2006) my problems and symptoms disappeared completely. I certainly considered it a miracle. I could then eat as late as I wanted before going to bed, eat anything I wanted and could lay flat on my back at night. Complete lifestyle change and a really welcome one.

Fast forward to now. In just the past three weeks I am having the all too familiar GERD symptoms again. Mainly the pains up under the rib cage that are fairly low level but go on and on. Apparently the NFP was not the forever answer I was hoping for.

Elsewhere on this board Melkon, you will find repeated references to magnesium addressing "our" problem. I have been experimenting with taking magnesium and it does appear to be effective in alleviating those pains. I do not yet know the correct type of magnesium, or the dosage. I am not finished with the process yet, but if there is even a chance that your taking a supplement like magnesium would address this issue for you, my thinking was that you could be experimenting at the same time.

Best wishes to you in finding relief.

Old 08-11-2012, 06:50 PM   #6
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Re: refractory gerd - in real trouble here

You say your LES pressure is higher than normal. That's very interesting, and it might mean that there's something a little different going on with you. Certainly I don't think reflux surgery is the right answer here.

Your LES and esophagus are lined with muscles, and in some people the muscles don't quite work right. In classic GERD, the LES is weak, and thus stomach acid washes up into the esophagus.

However, if the pressure is too tight, this can mean spasms that are quite painful and feel a lot like heartburn.

You may as well try the magnesium. It's pretty safe, assuming you don't take excessive doses (more than 500 mg per day.) If that doesn't work, some medicines that address muscles and nerves may help. Baclofen is the first one that jumps to my mind.

Old 08-13-2012, 03:18 PM   #7
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Re: refractory gerd - in real trouble here


[Got off tract. I'm adding this:
I meant to say I recommend using magnesium citrate. It is easy to digest. I use that gerd or not.

Tums are made of magnesium and they have an immediate temporary relieving effect. But magnesium pills aid in relaxing muscles, and is not immediate Gerd relief. Relaxing definitely helps the digestive process andwhatever we do to relieve stress helps digestion.]

In my opinion the main way diet contributes to Gerd is over-eating and eating stuff that is not really food. Processed and pre-prepared foods are not in their natural balances and so they create imbalances.

I tried the prescription meds and they did seem to give relief for a short time. I quit believing that a drug or surgery is the answer. What feels like a malfunction, is in my opinion an imbalance due to eating processed substances. The body is not only malnourished it doesn't know what to do with that stuff.

My digestive problems also came back. In my case I relieved my problems by eating smaller meals of real foods in their natural state, though I could also lightly steam or cook them.

I increased stomach acid by first eating a tablespoon of sauerkraut or taking a teaspoon of any type of vinegar before eating. I decreased high acidic food by stopping coffee and sodas. If I want coffee I drink milk first and then limit the amount. I can do OK on it that way.

I definitely do not think acid reducing drugs solve the problem or are safe.
- Lance -

Last edited by lanmar; 08-13-2012 at 03:32 PM. Reason: added something

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