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Now What

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jules5527
jules5527

Briefly, had constant sore throats, earache headaches and occasional Oesophagitis I am on nexium, have a 2cm hernia, just has the PH tests etc done and it has come back with a normal demeester score, and at the bottom it says should check that the pain isn't caridac related? I am so tired of this battle does this mean then I am classed as not having acid reflux, could some one explain to me i am just a bit confused. thank you x

3 likes, 12 replies

12 Replies

  • willett10764
    willett10764 jules5527

    Posted

    Now, I'm far from being an expert.  But I've suffered from GERD for more than two years before finally being sent to have a panendoscopy.  The problem was that no one would call it what it was.  No one knew why my mouth always had a bitter, acidic taste to it.  Everyone address the symptoms, but no one would address the problem. I had an attack in May 2014 - burning and stabbing right under my check. I was told that my gallbladder was infected - but what about the bitter, acidic taste in my mouth all the time?  Told I really needed surgery and to date have not been scheduled for surgery.  December 2014 after another attack, I was sent for a panedoscopy that confirmed that the pain and burning was GERD.  True, my gallbladder is infected, but I was only given a "suggestive" diet, but it was never explained exactly what was going on with my body when I would eat.  I'm not talking about spicy or fried foods.  I had an attack after have a piece of chicken and green vegetables.  I'm still concerned about the gallbladder, but there's nothing like being hungry and afraid to eat.  I haven't been able to eat normally, not to mention healthy because almost everything I eat causes pain or heaviness in my chest.  All I can suggest is to do a lot of your own research, write down your questions and what you've found out.  Then the next time you go to your doctor open your notebook and ask your questions until you're satisfied with their answers.
    • dane521
      dane521 willett10764

      Posted

      Hello  -I have the same symptoms and always being afraid to eat because of the intense chest pains at night...after eating a bowl of cereal!! Or like you said-chicken or just regualr food. But do you mind me asking  - What is a panendoscpy? I have had an endoscopy - is it different than that?
    • willett10764
      willett10764 dane521

      Posted

      They're basically the same. If I'm not mistaken the panendoscopy is an upper GI endoscopy.  It's the scope that's inserted down your throat panning the esophagus down to the stomach.  With the panendoscopy, I was put totally under using the medication propofol.  The scope was placed down my throat to take pictures of the esophagus, stomach and the working of my sphincter to see what was going on.  The result was "GERD" and for the first time it was explained to me and what was found and why what had been happening to me had been happening.  With the Endoscopy, where you put totally to sleep?  Was there any problems with your sphincter?  It's my understanding that the acids in your stomach are kept there by a "working" sphincter.  If the sphincter isn't closing correctly or opening too often, it allows the stomach acid to come up and out.  So when we eat food associated with alot of fat content, it over-works everything, the sphincter does not close properly, stomach acid comes up, settles in your esophagus and starts the burning sensation and the severe pain.  I'm not an expert in diagnosing, but I'm an expert in the paid caused by GERD.  But I really think they're the same, just different things being done to the patient in different ways.  But with the "bowl of cereal", it could be the fat content in the milk, if sugar is sprinkled over it, what type of cereal is being eaten.  I've learned that with chicken, it's the skin that's the culprit.  We just have to do alot of research and change the way we eat and "when" we eat.  I will not eat any food past 6:30pm...not even a cracker.  The laying down soon after eating starts the discomfort due to the acids that are over-reacting for the food and the stomach.
  • jules5527
    jules5527

    Posted

    Thank you willett, it is so draining isn't it i generally seem to get more silent type of reflux symptoms and i can honestly say that i can eat one thing one day and then not the other, maybe this this is just down to the hernia for me, just got confused about the cardiac bit on the notes, just soo frustrating especially when it takes so long to find a solution, and when you spend your life with no light at the end of the tunnel it is soul destroying, but most people on this forum know that don't they, sorry this all sounds so down but that is where Im at the moment.
    • willett10764
      willett10764 jules5527

      Posted

      Believe me when I say I understand your confusion, distractions and that "dimming light" at the end of the tunnel.  All I can say to you is that what I was meant to go through over these past two years has taught me alot about myself.  It's taught me to listen to my body and to care for it. It's taught me not to take anything for granted, especially my health. It has taught me that as frustrating as it can be to have 'half' answers, it's even more frustrating to have no answers.  I don't want you to feel that you have to apologize for your feelings.  They are your feelings and you have a right to them.  I concern myself with the emotions behind your feelings and how "down" emotions can led to despair.  I was where you are now two years ago.  When my illness led to my below knee amputation, I asked God, "why me?" and His answer was, "why not you".  I do not know if you are spiritual.  I am, and have no shame in it.  But I will say that in everything, a person must live by faith.  Without it, you find yourself relying on only what you see, what you can touch and you tend to lose your true self.  Pain is pain.  Do your research.  I know that the internet is just a lot of opinions, but some medical sites are trustworthy. Keep a journal of what you eat and how it affects you.  Eat at set times. Never less than three hours before bedtime.  We only have this one physical body and we must be good stewards toward it.  Take care!
  • jules5527
    jules5527

    Posted

    Thank you again Willett, yes like most on this group, i think if you could find the solution  I would be happy to live by it to be pain free, but it just goes on and on and on, i can honestly say i am the same as place as i was four years go if not at times worse, i will be ok because you have to be, yes i am spiritual and draw on it a lot and it  does help and i will get over this hurdle there are a lot worse things out there and i appreciate what i have around me everyday. Just everynow and then it just gets to me lol, good luck with your journey xx
    • willett10764
      willett10764 jules5527

      Posted

      I wish you all the best.  See your primary doctor and insist on being seen by a gastroenterologist.  You need to be seen by a specialist familiar with stomach and digestive disorders.  Sometimes we have to take control of our own health instead of being meek around those with the "Education".  It's our body.  And the only one we have for now.smile
  • Glennie68
    Glennie68 jules5527

    Posted

    Hi Jules,

    I missed this one! Did you do your ph test without meds and eating trigger foods? I have heard some people who take these tests when still on the meds - it's hell to get through without them - but it's the only way they can get a true picture of what is happening. I just found out my demeester score about an hour before my op - it was 16.8 - but he also said I was refluxing 50% of the time during the test.

     

    • jules5527
      jules5527 Glennie68

      Posted

      hi Glennie yes i did it pretty gross but hey needs must :-) but the results came back normal demeester can't believe it every day i wake up with sore throat earache and headache, if there is no extra acid then why am i on the meds for 3yrs i have a small hernia im guessing thats the problem but the meds don't work tried the diet change thats not working very well the consultant say that surgery isn't needed, i cried for two days solid there is no end in sight, been back to doc changed meds shesaid these were the last ones to try, which left me with migraine for 4 days so went back to my old ones and got to go and see doc this week and on and on it goes, it seems on research that hernias especially small ones you just have to 'manage' them will wait to see what she says, thanks for replying and fantastic news you have got where you are now xx
    • Glennie68
      Glennie68 jules5527

      Posted

      Hi Jules,

      You probably need a ph test that picks up bile reflux as well as acid reflux. I had straight forward acid reflux, so I got a positive demeester score. For what I've read (and I read a lot before my results came through - due to me having symptoms I never experienced before on test) bile reflux is harder to treat - and won't respond to the usual drug regiments you would be put on. Not much comfort or help to you now, but I'm sure there will be someone out there who can help, it's just knowing who and what they can do!

      When you have this, you just want to get better - as so much of our lives revolve round eating and drinking, being social. 

      If you have a really good GP - I'd sit down and have a chat to see if they can come up with any other routes you can go down, you have to let them know how much it impacts on your life - and that you want to get better (hopefully with out medication!) and take it from there.

      Good luck!

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