Haven't a clue why this is happening to me

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Hi, new here, but seem to be in a similar boat to a lot of other people. I had a gastroscopy on the 10th feb, after suffering for three months with severe silent reflux. I had to bully my doctor into this as they were of an opinion that my swallowing difficulties and stomach problems were all in my head. Anyway, the gastroscopy found potential 2 tongues of barretts a small hernia and gastritis. Following the gastroscopy I had some pain in my stomach but put that down to the amount of biopsies that were taken. I was put on 60mg Lansoprazole a day, which seemed to work for a couple of weeks (apart from these pains). After two weeks I started to feel really ill. Joint pain and flu symptoms plus really heavy and tender stomach. That lasted a week and since then I've been in pain every day. Have a pain in my stomach just below the ribs, also feel really full after eating anything, feel horrendous burning if I drink anything hot and today my swallowing problems returned sad

I have been backwards and forwards to my doctors and been fed a pile of crap basically. Told that the ppi could take two months to work ( when two months is the max time to be on that dose) also been told it's various organs including spleen and gall bladder playing up (?!)

I have also asked every time to be referred to a gastro specialist and have been told no, even after ending up in A&E with the pain last week. My ent consultant referred me yesterday thank god but I have no idea how long I will have to wait. Also, found out that no biopsy was taken of my stomach inflammation and don't understand why. I'm completely freaked and terrified I have cancer. The meds haven't helped my symptoms and I'm at the end of my tether. Lost half a stone In weight and eating has become horrendous for me. I've done all the diet alterations and raised the head of my bed etc etc but still no joy

I guess I'm just trying to find out if there's anyone else like me who hasn't responded to meds and also why they didn't biopsy that inflammation. I'm at the point of pushing for another gastroscopy in case they missed something.

Sorry for being so long winded, just really worried x

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6 Replies

  • Posted

    If you know which consultant you will be seeing phone his secretary and tell her how much pain you are in.

    I have found that does work.

    If you had cancer they would have noticed.

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  • Posted

    I thoroughly sympathise with you and your problems. I was diagnosed with acid reflux after an endoscopy

    although there was no inflammation but they found that I have aweak oesaphagus and stomach and

    acid refluxes particularly at night. I have a sore throat and slight cough both obvious symptoms.

    I have taken three different types of ppis am now on pantoprazole but I have suffered from terrible side

    effects on all of them spaced out fatiguend very depressed and bad stomach. So really not able to

    tolerate the drugs Not sure that my symptoms have improved much either.

    Didnt a gastro specialist do your endoscopy and follow up?

    I agree that they would certainly have found any signs of cancer Could your stomach pain be exacerbated by the medicaition ppis can cause stomach pain and other side effects although. not everyone gets

    them. Not saying this is the case but when you see the specialist the should be able to tell you . I have

    found doctors reluctant to talk about side effects,

    You can also get bloating fyrom reflux and I believe from the effect the medication has in reducing acid. I am obviously just giving my opinion but I know a little bit of what you are going through I do hope the

    specialist can sort you out. Good luck

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  • Posted

    Hi and thanks for replying. I've got the consultants name and it's on my to do list for Monday. I've found the only way to get anywhere is to be a pain in the arse. It was my gp who referred me and only because I demanded it - they thought it was all in my head, but the oesophagitis definitely wasn't! I've had no follow up in clinic and that's why I've been asking and asking for a referral. Thank god the ent doctor thought that was a good idea otherwise I'd be faced with another week of begging at the gps!

    My partner thinks that it's all side effects too, so I'm hoping so. Completely fed up with waking at 4am feeling full and then being absolutely terrified that I have something growing inside. Silly I know but just can't understand why nothing is better on such high dose tablets. In fact wasn't this bad before I started them!

    Does anyone know whether gastritis comes in bouts? Just wondering if that's what keeps happening? X

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  • Posted

    Yes I was in the same boat or am in the same boat with the barratts, dreadful problems on

    ppis, horrendous pain and side effects, coming off them worse, trust me if the thought there was something in your stomach they would have found it, I came off ppis and am still trying to heal almost a year on, I take ranitidine but ant acids really make me feel I'll. I think de stressing is what you need to do but its impossible whilst taking ppis, why they don't gives us milder ant acids to deal with these problems I don't know, they ruin peoples lives.

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  • Posted

    I've been taking a PPI (I tried them all but only Esomeprazole really helps) since 2001and have not had any problem with them. I try to have a few rest days but by the third day the acid takes over. One of the doctors in the practice I used to go had been on them even longer than me.
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  • Posted

    So angry right now. Just been to the hospital and based on no evidence he has decided to up my dose of nexium to 80mg per day. I'm not happy taking that amount without knowing that the oesophagitis isn't getting any better. As for the Barretts, I was under the impression that they weren't sure if the sample was gastric or oesophageal so weren't sure whether it was barretts, he seems to think it's a definite diagnosis, though when I have shown the histology report to anyone they agree with my gps and myself.

    Do I have the right to ask for another endoscopy? My gp said that I should have been offered one 6 weeks after the first to check that the gastritis had gone.

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