What is going on

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marigoldgirl81

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LOOKING FOR PEOPLE WHOM HAVE NOT RESPONDED WELL TO PPI'S:

Well, i've been going through ALOT with GERD, esophagitis and gastritis for 8 or 9 months now. I had initial relief for a few weeks in July/August and tried to stop the 20 mg of prilosec and since then things have NEVER changed. Its like a nightmare. I only missed two days of the prilosec and went right back on it and then after no relief for a month many dr's visits, i went up to 2 a day, NOTHING, no difference except my gallbladder began to hurt and spasm alot, i tried to stop the 2nd prilosec upon advice of my acupuncturist but the rebound acid was out of this world on an already burned esophagus and eating was next to impossible. Fast forward to March 2010!!...i can't believe this is still going on, its like i am in hell. My throat is raw red, after 2 rounRAB of antibiotic the ENT dr now thinks its viral so, i'm on an anti-viral. I have tried protonix, nexium, carafate....NOTHING except lots of side effects. I feel like this was all triggered by stress last summer and now it has been made sooooo much worse by ppi's.

I truly feel like my health is in serious jeopardy after all these months of a raw esophagus. I go to the GI dr tomorrow, god only knows why, they have no answers since i am not responding to their ppi's and then back to ENT to re-check throat this Friday.

This is ridiculous. I am so worn out from this illness. My stomach never burned, had trouble digesting food/gurgling all the time, gallbladder stuff until these ppi's. I have read that there are some studies suggesting ppi's can affect gallbladders and make them sluggish (i have no stones or infection). Acupuncture, dgl licorice, slippery elm bark, chinese herbs, manuka honey, aloe vera gel has done NADA.

Just posting again to see if anyone has ever heard of such a perplexing case. The drs refuse that ppi's are the reason for all the new symptoms on top of gerd but things have gotten soooo much worse since being on them every day for these 8 or 9 months. Its all "in my head" that it could be ppi side effects, they are one of the safest drugs i've been told over and over.

I am assuming he will order more tests tomorrow but why, like he said even if it shows things have turned worse (whic they have) the only treatment is ppi's. I do not think surgery would be good for me as i have never really responded to ppis and the fundplocation (sp?) sounRAB it comes with varied success. *Sigh* I am just worn out with drs and medications and still getting worse. I really want off of these but my poor esophagus and throat are in no shape for an attempt. I feel duped an on my own with all these specialists and their aresenals of ppis.
 
My heartfelt sympathies to you!
My symptoms were abated by the Fundoplication; I still
take a PPI twice daily (am and pm) but, I'm able to pretty much
eat and drink anything I want. I do exercise daily and this helps
alleviate the stress. Good luck to you!
 
So sorry to hear you are going through all this suffering. I will not post the long list of remedies I am trying to deal with my symptoms because it looks like you have tried them all. I am keeping my fingers crossed that the antiviral medicine does its trick for you and you start feeling better soon. My discomfort is nothing compared to what you are going through.

Before I took a PPI (Aciphex) all I had was mild to moderate heartburn and some wheezing. During the course of Aciphex (two and a half years) I had no symptoms of GERD or GI discomfort at all. I have posted here before that the medicine worked almost too well for me.

Now that I have been off the Aciphex for six weeks, I have had episodes of severe heartburn (I hope rebound) but also lots of gas, pressure, stomach pains (in the pit of my stomach), etc. Again, I am attributing them to the rebound and hope they go away with time.

Marigold, I forgot if you have only been prescribed one type of PPI or if your doctors have tried different ones to see if one works better than the other. I know from personal experience that the first one I took, Zegerid, did nothing for me even though I followed the directions given by the doctor to a T. Before that, I had taken some OTC Prilosec on my own and that gave me a lot stomach pain. Therefore, different people must respond differently to different PPI's.

Hope you start feeling some relief very, very soon.

Rose
 
I have not tried aciphex but protonix, nexium and carafate...and the prilosec.
I can't believe my body was so normal one day and on June 22, 2009 acid reflux came on and has never went away...its so bizarre, like i'm broken. Literally one day fine and the next day this nightmare that won't go away and is turning into something much more serious.

I don't think the antiviral is working too well. Everything is red as ever, hurts like heck and regurgitation still is happening. I will keep you updated on what dr says tomorrow (although i'm not getting my hope up anymore that its going to be anything groundbreaking).
 
I've had varied success with PPI's over the years. I was able to keep my more minor symptoms under control for years. Then my symptoms changed and I couldn't find any one PPI that got it back under control. I've been on every PPI out there. Some worked better for me than others.

The WORST for me: NEXIUM. My reflux symptoms were mostly a chronic cough and major flare of asthma. When I started the Nexium, diarrhea, belching and heartburn set in big time and my cough got worst. The heartburn and belching went away when I went off the Nexium, but the diarrhea didn't. It has been almost 2 years and I've officially been diagnosed with IBS. So frustrating, before the Nexium, I was regular as clockwork.

The BEST for me: Prevacid in the Solutab version twice per day. For a while, it kept things under control well. Even when symptoms came back, it helped more than any of the others. I don't know why the Solutab version helped me better than the others. I've switched to Kapidex 60 mg most recently. It has the same active ingredient as the Prevacid.

I really wouldn't discount the fundoplication completely. When my reflux was triggering life-threatening asthma attacks, it literally saved me when nothing else was helping. I know I've posted lately that it may have "slipped", but my symptoms have gotten better. I'm waiting for test results, but my belief now is that the fundoplication is still working.

Good luck tomorrow.

MountainReader
 
Marigold:

Please let us know how it goes today with your doctor.

I'll second Mountain Reader's comments regarding PPI's even though I have only taken three. One did absolutely nothing (as if I were taking a sugar pill even though I took it for two weeks exactly as ordered by the doctor), the other gave me stomach pain and the third worked very well. I also know other people who suffer from reflux, and they have had similar experiences. We all seem to swear by different medications.

I am not a medical doctor but feel I have common sense. If a person is not responding to a medication after a reasonable amount of time (a couple of weeks) maybe something else neeRAB to be done dosage-wise or medicine-wise for relief.

Hope you receive some helpful informaton today and please let us know how it went.

Rose
 
Thank-you for your replies. The GI dr said he doesn't know why i am not responding to ppi's....but that i'm not alone. He gave me kapidex? (prevacid)..i may try it soon, trying a new med has become somewhat stressful on my body, so, i'm going to sleep on it for a few nights. he also told me there is a new med that starts with a "M" that helps prevent non-acidic regurgitation...but that it has MANY side effects and he honestly doesn't recommend it for me as depression and anxiety are very common with this new drug and i have a history of both....as far as the fundplocation goes, he said he doesn't know how well i'd respond b/c for one hes not convinced yet that it is the LES muscle, he thinks since i have anxiety and panic attacks this is more stress induced and two, since i have never responded well to ppi's and three he said it is a surgery and can cause wierd sensations too and un-needed anxiety for me. Since i just came off of benzodiazepines and NEVER want to be on another one (whole different story) ...my anxiety after a surgery could be tricky to treat, especially a surgery hes not convinced would help me yet. He said he will give me the 24 hr ph test but only when i'm ready for the medicine or surgery (if ever) b/c he said there is no point in putting me through the ph test if i don't want those two options.

He does want me to focus on yoga, qi gong, meditation, eating well (have been), etc. Basically, he said there is not a ton western medicine can do for me at THIS point beyond treating my symptoms which is tough b/c i'm not responding to regular treatment and is not the root cause of the reflux.

I have gotten two good books, "Gut Wisdom" and another one, forget title, they are amazing though...i thought i had read everything about digestive health over the past year but absolutely not, some very new strategies...i am going to keep on keeping on. I never had problems digesting my food until after ppi's and the infections, i still feel lack of stomach acid could be causing some of my misery...but until i find a way to determine, i will work on diet and relaxation. Best of luck to you guys too....keep me updated on your situations.
 
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