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Symptoms returning despite ppis. Scared!

Posted , 5 users are following.

stella19032
stella19032

Hi there, I started with lpr back in November. After the ENT discovered inflammation in my throat I had a gastroscopy which showed oesophagitis and gastritis also Barretts. I was put on ppis - ending up on Nexium 20mg twice a day and Domperidone 4x per day and Gaviscon Advance. This seemed to work, and despite having stomach pain my throat symptoms got better and I was discharged from ENT. I had a follow up gastroscopy in April and this was also clear. Even though I don't like taking all the tablets, I thought that it was worth it for the healing.

At the beginning of June my throat and mouth started burning again, and I put this down to the fact that I had cut back on the Gaviscon. I upped the Gaviscon and things got better. Over the past few days I've felt the burning again and also felt really bloated. 

I'm so depressed and scared. Just looking for similar experiences. I know it sounds overly dramatic but I'm terrified I have stomach cancer or something so any similar experiences will be greatly appreciated toout my mind back in order. 

Thank you 

2 likes, 19 replies

19 Replies

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  • lucinia
    lucinia stella19032

    Posted

    I would have thought that your gastroscopy in April would have shown something was wrong with your stomach if there was anything. You don't go from all clear to full blown stomach cancer in three months so I wouldn't worry too much. However, I would go back to the doctors if I were you to try to get the symptoms sorted. Do you eat in the evening? If you do, try to make the last thing you eat your last meal at 6pm - nothing but water after. Chocolate and wine are dreadful for gastric problems so cut them out completely (not easy, I know). Do try staying off grain - especially wheat as that's a real gas builder. It's worth trying these things for a couple of weeks to see if there is any improvement. As you had a gastroscopy only three months ago you have no need to worry. That shows up anything that is wrong so obviously you are clear. I expect they'll monitor you because of the Barretts which should give you peace of mind. Gastroscopies are a brilliant tool for monitoring - nothing much escapes them as it's a visible, plain as day snapshot of your insides - nothing to interpret; no magnetic imaging to read and assess. Do get sorted out - you can't leave things the way they are - but controlling digestive conditions is very much trial and error but at least there are different types of drugs out there. Most of all, please don't be scared; you are being monitored and any hint of anything untoward will be pounced on.

    I hope this helps.

    • stella19032
      stella19032 lucinia

      Posted

      Hi there Lucinia, many thanks for your reply, it's much appreciated.

      I think my symptoms are all

      The more depressing as all of the lifestyle change things I've been doing for months. I don't even drink water after my evening meal. I do eat a bit of wheat so my next thing is to cut that out too. I haven't drank any alcohol for years now and have kept dairy to a minimum ( about 150ml per day).

      I'm waiting on a ph impedance study in August. My GP is useless as he seems to think that the ppis should have solved my problems. I was at both the dentist and the ENT today and both found acid inflammation. I was clear a couple of months ago. I just don't understand sad

    • lucinia
      lucinia stella19032

      Posted

      Hi Stella. I've been on PPIs for 17 years and for a long time, along with a Nissen Fundoplication, they worked. Now they don't fully as I have a permanent sore throat and chest pains. I recently had a  blockage in my bile duct (long story but not gallstones as I've had my gallbladder out) and no bile was getting through and hey presto, my sore throat etc. reduced greatly. As soon as the blockage was cleared the old symptoms came back. It would appear that bile reflux is mainly my problem now although I do still have to take the PPIs for the acid (I have nocturnal reflux so at night my oesophageal sphincter relaxes letting the contents of my stomach through). As the acid is under control they now have to control the bile. Maybe bile is a factor with you too especially as the PPI did work for a while. Just a thought.
    • lucinia
      lucinia stella19032

      Posted

      Forgot to add, your ph impedance study should show if there is bile refluxing.
    • stella19032
      stella19032 lucinia

      Posted

      Hi Karen this is what I was thinking too, but I was hoping surgery would sort it out. I've had scans of my gall bladder and all seems fine but the symptoms do suggest bile or rather non acid reflux as cause of my  symptoms. I was hoping surgery would sort that out but it seems not then. I thought that after nissen no reflux could come back sad

      I'm also not sure whether to stop my ppis before the impedance study. I've been given a choice but I don't know what to do. Did you have ph impedance? If so, what did you do? X 

    • lucinia
      lucinia stella19032

      Posted

      Hi Stella. I had just a ph test many years ago. I've only just found out about the ph impendance test. It was having my gallbladder removed that started the bile reflux unfortunately. The Nissen fundo did work for my daytime reflux but not the nighttime reflux more's the pity. My sphincter totally relaxes at night so even with the folds there is a gap. In order to keep the reflux at bay at night, it would have to be too tight for the food to go down. I believe this new magnetic bead band is really good. Alas it's too late for me as I've already had the other op. Perhaps it's an avenue you could explore. I certainly would if I were you.
    • stella19032
      stella19032 lucinia

      Posted

      I'm definitely going to push for that, tho I think if you have Barretts it might be a no no ( I have short segment Barretts) it's good to know that the Nissen does help during the day tho, as that's when I have the majority of my symptoms. Since I raised the head of my bed my night time reflux isn't too bad. At the end of the day I just want to feel better and be able to eat a range of foods again. That would be nice smile 

      I pushed for the impedance as I believe that it's the reflux itself rather than the acidity of it that's causing my problems, but now I'm thinking it may be better to get a fuller picture without the meds. The hospital has kindly given me the choice and I do have a month to think about it. It's been really helpful to hear about your experiences, especially as I've been so low with it all today. Sometimes I'm convinced that this stupid disease is going to kill me sad x

    • lucinia
      lucinia stella19032

      Posted

      No problem.

      Re your other post about this stupid disease going to kill you: My mother contracted cancer of the oesophagus. The first she knew anything was wrong was when food stuck. The doctor told my sister (who worked for him) that he would have been less worried if she'd had some pain as most of the time it's the ones who don't feel any pain or discomfort who end up with the cancer. My mum felt nothing. I sometimes think us 'creaking gates' outlast the superfit onesconfused. Try not to worry too much and I think you're right going 'sans drugs' for your test. Good luck.

  • carmel83758
    carmel83758 stella19032

    Posted

    Hi Stella. I know how you feel it is the same with me but am waiting for myu endoscopy. If they did one on you last year and said what is wrong then that wont have changed in less than a year surely?I googled symptoms of stomach cancer etc and you know how it is you find something your hair stands on end etc. But whatever they told you before must be the case surely.
    • stella19032
      stella19032 carmel83758

      Posted

      Hi Carmel, I kind of know that it can't be the worst but it's hard when you feel so bad. I know things can't have changed in 3 months that much and that after 2 gastroscopies this year nothing could have been missed. 

      Are you on ppis too? It's so depressing when things start to go wrong sad

      When is your gastroscopy scheduled for? X

    • carmel83758
      carmel83758 stella19032

      Posted

      Hi Stella. Am due for mine Monday week, wish it was tomorrow to get it over and done with. Yes it is hard when you feel so bad, and when tablets etc dont work. Am on cimitidine now, it worked fine a few months ago but just does not seem to work now.
    • stella19032
      stella19032 carmel83758

      Posted

      Hi Carmel, I hope it all goes well for you. Sometimes you can have  a functional disorder which means although you have pain you have no damage, so fingers crossed. I haven't heard of cimetidine, is it a ppi? Did your tablets suddenly stop working too? X
    • carmel83758
      carmel83758 stella19032

      Posted

      Thanks for that Stella. Strange that you should say pain with no damage. Years ago I was fine and then suddenly got a terrible stomach and when I went into hospital fo tests they said there was nothing wrong. Yet it was agony and no painkillers would help. Then it just stopped. This pain

      started it all a year ago, one moment fine then terrible stomach, then headaches. I was told by the doctor probably ulcers and put on pp1s. Found they gave me bad headaches.

      Cimitidne is similar to a pp1 a pp2. Was taking them for a few months fine and then they stopped working.

    • stella19032
      stella19032 carmel83758

      Posted

      Similar to me then, as I get terrible headaches when my stomach flares up. Do you think your headaches are related to your stomach or the tablets? It's one of my first symptoms. I'm at the stage of going for surgery if I'm eligible. This whole thing has really affected my life in a negative way x
    • carmel83758
      carmel83758 stella19032

      Posted

      I get headaches or stomach aches, not both at same time. And I was getting them before I took any medication.

      What have they diagnosed you with and what will they do Stella?

    • stella19032
      stella19032 carmel83758

      Posted

      I had grade 2 oesophagitis and gastritis (healed on April gastroscopy) and short segment Barretts. I also have silent reflux that affects my throat. I've had the gastroscopies plus a barium swallow. They like to give you ppis and send you on your way. I don't think they know what to do with difficult ones.... 

      I'm scheduled for a ph study in August and if that comes back as positive then I'm probably going to be put forward for anti reflux surgery. I'm now hoping for that as I think it may solve all of my problems smile 

      I think the gastritis causes the headache and stomach thing. I'm hoping that I'm not having a flare up of that. I'm going to stop wheat tomorrow and see how I go on x

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