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  • Not sure what to do as nothing is working

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    Old 04-09-2014, 08:48 PM   #1
    CFaith1's Avatar
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    Not sure what to do as nothing is working

    I have read many stories but I have not posted my story yet on here is some background. Before Oct 2013 I was a very healthy 46 year old female who may work a little too hard but I have always taken care of myself. I exercise, in fact, I teach fitness classes on the side. I do not smoke, drink socially (but not a lot), do not drink caffeine (only had caffeine in chocolate). Eating habits were not perfect but far from horrible. In Nov. I weighed 127 pounds, 5'4". I got very occasional heartburn and have had pain between my shoulder blades and in my upper right side for several years. I took my first round of Prilosec last spring after suggested by my primary doc (14 days).

    I had horrible chest pain at the end of October and this was my first visit to the ER. They determined I had low potassium (strange EKG) and heartburn. Was given Protonix and well as nitroglycerin (when they thought it was a heart attack). Subsequently I had a stress test and all was good.

    Around the end of Nov. I started with bad pain in my upper right side after anything I ate...especially fatty foods. Again, another round+ of Prilosec. In fact, it was recommended by GI doc that I take two Prilosec per day. I refused. I went off Prilosec cold turkey before Christmas as I felt awful from the medication (odd side effects like bone pain in my hips, lower back, an overall sick feeling, and eye strain).

    On Dec. 30th I had an upper endoscopy and was diagnosed with a mild case of GERD. MILD.

    There were then 3 more visits to the ER in January. On one ER visit they did a CT scan and found Ovarian cysts. Subsequently I went to the GYN for an ultrasound...Progesterone for 2 months to shrink the cysts, and back again where it showed they had shrunk. On another ER visit they did an ultrasound of the gallbladder and determined no gallstones.

    Back to GI doc where I recommended a Hida Scan (yes, I recommended). The EF came back at an 8% functioning rate so it was recommended that it needed to come out (according to doc, normal functioning is above 40% ).

    I had the gallbladder out in Feb. 2014 and good thing because it was inflamed. It was also noted that the bile was thickened. No more Gallbladder pain!

    BUT--Ever since my gallbladder was removed, it's like someone has turned on an acid faucet in my body (if acid is indeed what it is). Another ER visit put me on Carafate and Reglan. The Carafate was soothing but the Reglan was not want to take ever again due to side effects.

    I went to a new GI doc who recommended trying a different PPI. I said no and tried to do natural things for the next 3 weeks--manukau honey, aloe vera juice, apple cider vinegar (horrible and made me feel worse), DGL licorice pills, exercised more, baking soda, apples, went on Melatonin at night, lots of water (but not with meals), elevated bed and even bought a GERD pillow, started with a chiropractor, eliminated gluten/lactose, took digestive enzymes, started a probiotic, etc....but I was getting worse. I had acid coming up my throat, in my mouth, tongue, was disgusting. Btw...I now weigh 109 pounds.

    I broke down and needed relief and called the doc. I went on Protonix 40 mg once a day (morning, 30 min. before meals) with Ranitidine 150 mg as needed in the evening (which I need by about 5:00 pm). I also cut out sugar and started the Fodmaps diet I hear lots of GERD sufferers recommending. This is where I am today.

    But I am still not 100%--or even 50%. After eating I belch constantly. Constantly! I did not think someone could belch so much. Also, after eating I have pain in my left side...under the rib cage and around to the back. My back is extremely sore. My bowel movements are not normal...I am fairly constipated. But then I may have diarrhea as well. By evening I feel like the Protonix is running out so I run to the Ranitidine 150 mg. I have mouth sores, headaches, tiredness, depression, a tingly tongue, ringing in my ears, sometimes my heart skips beats and races, and an overall sick feeling with acid taste everywhere. It does not matter what I eat...the acid is there.

    I do not want to be on the PPI nor H2 blocker for the rest of my life but not sure what to do...I know that these pills can cause MANY issues short and long term but I know that GERD needs to be treated. I am not sure the pills are even working because acid is still coming up my throat.

    I had my first acupuncture treatment two days ago-- I am desperate and maybe eastern medicine can help. I have such an open mind now. The acupuncturist gave me herbs but I have not started yet as not sure if they will interact with the Protonix and Ranitidine. I know the GI won't approve. I also seeing a chiropractor for the back/subluxation issues (again, started with the GERD issue). I am very depressed and I have never been affected by depression.

    I am considering taking a trip to the Mayo Clinic as I know they are rated highly in the GI dept.

    Interested to hear other experiences, thoughts, and what you did...I just do not know how I go from very healthy to a total disaster and I am sick and tired of crying about it. Thank you.

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    Old 04-10-2014, 01:55 AM   #2
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    Re: Not sure what to do as nothing is working

    It's all so familiar to me
    I had upper right pain which led to gallbladder removal which led to acid/bile reflux
    I dread going to bed most nights
    At the moment I am not eating after 6.00pm which seems to be helping a bit

    Are you sleeping on your left side? This is said to help, but is something I can't do due to recovering from a shoulder operation

    Chewing gum helps too, with neutralising the acid in the mouth

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    CFaith1 (04-11-2014)
    Old 04-10-2014, 10:55 AM   #3
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    Re: Not sure what to do as nothing is working

    Awful. I feel sorry for you. Much worse than me. I am surprised you haven't been diagnosed with Barrett's. There has to be something wrong with your sphincter or you have a hiatal hernia. I just can't conceive of any other reason. Many years ago, I had a friend who had hiatal hernia surgery. The last time I saw him, about 15 years ago, he was doing fine, and that was nearly twenty years after his operation.

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    CFaith1 (04-11-2014)
    Old 04-10-2014, 12:15 PM   #4
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    Re: Not sure what to do as nothing is working

    Oh I so feel Your plight!! I am in the same boat! My mouth is a mess....swollen, mouth sores, burning tongue with scolliped edges, sore stiff neck, swollen glands. I just had my gall bladder removed Friday. My upper GI was clear. I have pain and pressure on my lower left side that drives me crazy. I'm on Omeprazole 40mg and Gaviscon 4 times a day to help keep the acid out of my throat. I have been tested for everything...I even get acid in my ears! I have been at this sense July and it just seems to be one thing after another. I will keep a check on you and watch for future post to see if you have any luck. I was hoping having my gall bladder removed would help

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    CFaith1 (04-11-2014)
    Old 04-10-2014, 11:21 PM   #5
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    Re: Not sure what to do as nothing is working

    Thank you all. This is so depressing and it helps to know others care or are in the same boat. Checkers10--I really hope the gallbladder removal works for you!
    Since so many people have issues with GERD/Acid Reflex, you would think there would be a cure or a better way to manage this.

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    acid reflux, desperate, gallbladder removal, proton pump inhibitors

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