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Gastro reflux disease for 4 years & still ill

Posted , 9 users are following.

emma93878
emma93878

My names Emma and I am 17 years old, I want to tell everyone my story on gastro reflux disease.

I've had gastro reflux disease since I was 13 years old, all throughout GCSE's and now through college, I am in so much pain, I am out of breath, weak, I don't want to eat, I have no energy and I have pains in my chest and my upper stomach, since going to my gp from the age of 13 they was no help, neither was all the hospitals I visited, they said 'it's stress from school' I was only diagnosed with GORP or whatever it's short name is a year ago, when I finished school.

They have given me High dosage from 40mg -60mg a day, and they haven't worked, I am fine for 2 weeks then bed ridden for 4-7 weeks, I have no comfort from laying in a certain position I can't get these pains to go, I cant do anything. It comes and stays the pain never goes.

The only way I can ease the pain is from hot water bottle, which got so bad at one point I burnt all of the skin under my chest area from having the hot water bottle too hot and long on my skin, even from taking multiple tablets for it as well as had to re book my gastroscopy (camera down the throat) 3 times because the places they send me too can't do my age as I'm under 18.

I have kept myself at the same weigh 8stone 6 from when I was young I haven't changed, and I have a very good diet, no foods start it, the symptoms just come when they want. The top of my bed is higher by 8 inches and I'm still getting the acid causing problems in my mouth and throat. I'm sick to death and so ill, I can't do anything.

It's ruining my life, please can anyone help me? Has anyone got anything that can help?

1 like, 20 replies

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  • Mmagot
    Mmagot emma93878

    Posted

    Emma I'm so sorry you have to deal with this so young. Have you ever gone to an allergist to see if your allergic to any types of food that may be causing the reflux or your pain? I know my fiancé has a slight cheese allergy and gets immense pains when she doesn't take a pill and eats cheese.

    • emma93878
      emma93878 Mmagot

      Posted

      I've never thought of that, I've never had an allergies, that I know off, it doesn't really come when I eat food, for some reason. I've never been able to record any food starting my symptoms up?

    • Mmagot
      Mmagot emma93878

      Posted

      How long after eating food do you start feeling the pain you talk about? Have you had blood tests for

      Any type of disease or possibly cancer? Trying not to scare you but if you haven't had any tests or blood work or anything you should. And how come they won't do the endoscopy? Just cause your under 18 they shouldn't deny you a endoscopy kids get them. Or are you going in by yourself without your parents?

    • emma93878
      emma93878 Mmagot

      Posted

      Well I've had multiple blood tests, they have pacifcally states what these are for, I recon just to check everything? I'm not sure to be fair, I've had so many doctors trips and hospitals & I know.

      I was referred to a private hospital (going with my mum) and I had to wait 3 weeks untill I could have it the day before they called me to tell me that they couldn't do it because I was under the age of 18! Going back to the doctors tomorrow (Monday) to re book.

      I've tried that, as well as integestion tablets and heart burn tablets, I've tried multiple tablets as my nan has it, but they don't work for me like they work for her??!

      Thankyou for all your help

  • jokow22
    jokow22 emma93878

    Posted

    I feel your pain!! I have had these issues for 10 years. I have had 3 endoscopies and was once found to have severe gastric ulcers. But since then I have these chest pains and acid indigestion regularly and it floors me. The ulcers healed after a course of omeprazole but pains still come back and nothing seems to help anymore. It feels like I am having a heart attack and need to take big breaths just to feel calmer. I am sitting here right now in agony and have been like this for 10 days straight. The pain just sits in the middle of my chest and feels like somebody is pushing down on it.  I am trying another course of cimetidine but convinced it makes me feel worse! I too would appreciate any info anybody has for us! 
    • haider43332
      haider43332 jokow22

      Posted

      jokow sad to hear about your symptoms------i am facing such a bad  panic attacks from 3 and half years feel like my heart escape beat now its little bit fine but i burp alot every day more then 1000 times it occurs when i have my gall bladder surgery 6 years ago ist 2 and half year i adjust but then suddenly it worse feel like i have heart attack my heart escape beat then suddenly starts beatingi have done lot of blood tests,i donate blood 2 times in which they do all of the tests of my blood and the one patient is my nephew i didnot want to give him my blood as i am thinking i have problem but my nephew need blood in emergency thats why ist they check my blood and after that i donate blood to my nephew-----after that there are thousands blood tests for my nephews bcoz he has kidney problem he has blood in urines after donating blood they check my nephew blood for every possible disease but no thing found if there is sum thing wrong in my blood they will also find in my nephew blood---done almost 10 ecgs and echo of heart using alot of medicine make my stomach worse now i have stool problem----done 3 ultra sounds cbc test 2 time stool test clear cbc test tyroid test typhoid test jaudience test liver function test,recently done endoscopy no thing shown but every day i burp alot and feel my heart stop beating-------and also feel like some thing remaining in my colon for that i have next week colonscopy almost no blood but i have upset stomach and my last doc say to me i have Gerd acid reflux it ruin my life---don,t know what to do witing for colonscopy let see what it shows--if treatable problem then treat it if no problem i will discuss with doctor about Gerd surgery to be very honest i feel to bad every day i think i am dieing i am handome before and now by thinking alot i look like grand father in the age of 30 i have lot of white hair bcoz of lot of stress and upset stomach----------my wife ask from me what happened to me all of them think i am pschyo but i am not i have problem--undigestion but mostly with tomatos and evegtable i see some time tomatos skin chilli skin and vegetable in my stool and also lot of burps and panic attacks like heart attack don,t know what to do if surgery is the lat opton i will go for it-------sad try lot of medicine lanso prazole,omeprazole,esmoprazole nothign help me still burping 
    • emma93878
      emma93878 haider43332

      Posted

      I'm so sorry to hear about that, yeah it's so hard as we'll as the doctors and hospitals not helping or them not knowing how you feel

      Doesn't help either it's not good, Thankyou for the message and I'm

      So sorry for what's happened.

    • Wannaflbttr1
      Wannaflbttr1 haider43332

      Posted

      I am sorry to hear about your suffering, no one should be allowed to live this way with no answers.  I find that the  more you worry about your heart and stomach issues, the worse the anxiety can become and it gets to be a vicious circle!!  It might be helpful to try an elimination diet which will  help you identify what, if any, foods may trigger gastirc upset for you (its sort of  normal to see tomato skins in your stool....but there should not be blood.) if you've had all of the heart testing and labs, it is probably not your heart, but may be the reflux causing skipped beats.  I have suffered with these most of my adult life and have been told that they are not dangerous unless they are happening every 5th beat or so or giving you symptoms such as fainting, etc.  Ask you doctors if you could be have a vagal nerve response to the indigestion???  They are very anxiety provoking though and I battle panic every day!!  Also if the medicine you are on for reflux is not working, you might try talking to your doctor and switching medications.  omeprqzole (prilosec) did not agree with me and I have had much better luck with Zantac.  Everyone is different and maybe what you are taking is not the best medication for you.  Once you are on the right medicine you may find better relief.  I would also ask your doctor if your problems may be related to low acid verses high....if you look up symptoms of low stomach acid online, you will see many of the syptoms are similar....good luck!

    • haider43332
      haider43332 Wannaflbttr1

      Posted

      i used lansoprazole and esmoprazole omeprazole but no thing for work for me and like 10 months ago or one year ago i have super heart beat escape but from that i am fine now i didnot feel it now some time it is but not like before now the problem is i feel un comfortable in my chest and i feel like my breath stopd and after some time burps will start-----------specially when i am traveling in plane i feel like my heart stop beating and i can not breathe then burps will starts and after burping alot i become little bit fine------------one of my doc mention Gerd acid reflux to me-------------2 weeks ago i have colonscopy that is also clear--------so i think i should blame Gerd for all of my symptoms i don,t have heart burn to much some times but not always and the food come up again to my mouth when ever i eat,,,,,and also these panic attacks bcoz of gas and burps alot i just reffer my self again to the doc who do for me endoscopy let me talk to him about zantac or any other medication bcoz i am tired i am also hinking about fundoplication surgery for gerd i will also discuss it with my doc----------bcoz i am tired all of these panic attacks since from when my gall bladder is removed i have the burps problem-------really tired well now there is holidays here let me see after the holidays i will go to doc
  • jokow22
    jokow22 emma93878

    Posted

    Btw. What meds have you tried altogether? Some start to work then you get 'immune' almost. Maybe you are on the wrong one or wrong dosage? I have had omeprazole, lanzoprazole, ranitidine and then top up with gaviscon advance and Rennies. Sometimes a pint of milk!! Some doctors have said the pain might be coming from my chest muscles, costochondritis. I do a lot of lifting in my job. Do you lift anything regularly? Cimetidine can give you painful muscles and joints so perhaps that doesn't help matters? As you can see, clutching at straws too! 

    • emma93878
      emma93878 jokow22

      Posted

      Thankyou for speaking to me about it, mine started to hurt Thursday and it can last weeks, I'm suppose to be off on holiday on Aigust the 13th and don't think I would be able to go because of the amount of time I'm in pain, I can't sleep, and the pain is the same as yours! I have to take deep breathes, like I have been running for miles as well as this pounding in my stomach and this crushing feeling in my chest!!! The only this is I haven't lost my appetite to much, but when I don't eat I feel ill and when I do eat I feel ill!!

      I have tried multiple omeprazole 40-60mg, gaviston, I've tried others as my man has been giving them to me! Nothing and I mean nothing has helped and I'm in so much pain ??! Integestion tablets, heartburn tablets even irritable bowel tablets at the start as I was 'diagnosed' with that, I've had multiple, I've got to the pharmacists with my mum and brought a load to try out, nothing has been able to settle my chest or stomach, Thankyou for your message!

  • haider43332
    haider43332 emma93878

    Posted

    don,t know about your symptoms  if its acid reflux if you tried lot of medicine and didnot work for you then the only thing is endoscopy which will rule out what the real problem is------------------------if doc think you are not able to have endoscopy then there will be blood tests i have also possible gerd after my gall bladder surgery i burp alot and indigestion done lot of blood tests and endoscopy which didnot show any thing wrong  no medicine  is working for me omeprazole ,lansoprazole now i have 20 mg nexium but all  i know it ruin my life i have in digestion and some time un digested vegetables skins and tomatos skin in my stool which make me really worried i have next week colonscopy  hope it ill be clear--------------------------at least try to do cbc blood test i don,t know what kind of doc it is which didnot do any test----------------if medicine didnot work for you the last option is surgery for Gerd that is Nissen fundoplication or Linx surgery------but ist b sure tht if it gerd try to talk to your doc  about blood tests
    • emma93878
      emma93878 haider43332

      Posted

      Yeah when I go Monday I'll ask is it 100% GERD, I'm sick to death of the pain. At 17 or any age I shouldn't of anyone shouldn't be struggling to sleep, feel ill when they eat or when they don't, have these chest pains and feel as if you are so weak you can't get up out of bed, I'm tired & knackered but haven't been able to sleep, it's ruining my life!!!

      I'm thinking of asking about the survey after I have the endoscopy, but I need to re book that and wait another few weeks just to get it done, it's become such a long process and I haven't got the time for all this pain, escpiacally when I'm trying to sort out not just my college but my University as well

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