Help! Why are things worse?

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Hi, as I write this I am nearly in tears. I haven't a clue what to do. I was diagnosed with grade 2 oesophagitis in February after an endoscopy. I also have Barretts and gastritis. All of this was a bit of a shock as I don't get heartburn. I had a lump in the throat feeling and difficulty swallowing. Before I had the endoscopy I had started to feel better and felt a bit of a fraud on the day, however when I got the results I decided that taking the meds (30 mg Lansoprazole 2x per day) was the best thing to do. Things only got a tiny bit better and my GP switched me to 20mg of nexium 2x per day. This seemed to help and for the first time in months I was able to relax. I had chased around after a gastro appointment at the hospital for months and finally got one last week ( I had been having a burning sensation in my stomach ever since the endoscopy).

To cut a long story short, the GI doctor said that all my symptoms were reflux and that I had to take double the dose of nexium (40mg 2x per day) since then my symptoms have got slowly worse, and now I can't swallow food again without it hurting and sticking. My throat is bad and I have that all too familiar bitter taste in my mouth.

Has anyone else had flare ups of oesophagitis? It's really scared me because of the Barretts. I just don't know what to do now. Ideally I would like another endoscopy as I wNt to know whether these tablets are helping or making things worse. Just wondering if there were any similar stories out there with happy endings. Sometimes I feel like I don't want to go on with things not getting better Nd with the threat of cancer hanging over my head. Ironic really as this time last year I was happy as Larry. Hope there's others out there who have had similar experience and who can offer guidance.

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  • Posted

    I'm sorry to hear that you're feeling so bad, Stella. I take it you are still under the gastroenterologist and he/she hasn't discharged you? I don't have the same diagnosis, but, if it were me, I think I would ring the consultant's secretary and speak to her. Hopefully, she will be able to speak to your consultant and arrange another appointment for you fairly soon, so that you can explain that things are no better and, in fact, are getting worse. I think you really need to see him/her again. I've spoken to consultant's secretaries on more than one occasion and have always found them to be very helpful and understanding. If you have been discharged, then I would suggest you go straight back to your GP and ask for a re-referraI as soon as possible. Stress not only your symptoms, but the effect that the worry is having upon you, which is also important. I always write everything down before I see a doctor, so that I don't forget anything and also so I can get things clear in my mind. I hope that you are soon feeling much better.
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  • Posted

    Thanks for that. I'm still under gastro and have spoken to his secretary so many times just to get that first appointment. I didn't even get to see him! I have an appointment hopefully for a months time but that seems too long with things getting worse. I may get my gp to phone, or at least get her confirmation that I need to be seen again. I'm so worried. I was ok last week and now this. The doctor didn't even examine me properly sad x
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  • Posted

    That's not good. If you explain the situation to your GP, would she be able to refer you somewhere else, as you're not happy with the treatment you've had with your present gastro? I would make sure she knows that he didn't examine you properly and so it's not given you a great deal of confidence in him. It's certainly worth discussing.
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  • Posted

    Hi Stella,

    Are you following any diet? The diet is an important part of my recovery.

    At first I was taking dexilant (PPI same as nexium) and it did not work, it started working when I started following the low-acid diet, avoiding all acidic food, all irritating foods, all trigger foods and all dairy.

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  • Posted

    Hi Ines, not a strict diet but I will give you an example day and see what you think. Today I've had some cereal and low fat milk, a cup of weak decaff tea a bagel and a bowl of plain boiled rice. I've been too scared to eat anything more today as I hate not being able to swallow. I usually have no fats, no chocolate, no citrus and no caffeinated tea. I also drink loads of water (2l per day) usually for tea I have plain boiled pasta and plain boiled quorn pieces. I'm not sure what else to eat. Tonight after the rice I tasted acid immediately. This is do depressing sad x
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  • Posted

    I am sorry you are feeling so bad. It is a very nasty ailment, I really miss my tea and my coffee. I have tried decaff tea and coffee, but I've seen on stuff on internet even the decaff is a no no. I could not eat around Christmas time and lost so much weight. I am 65 and my girls are 42 and 32, they thought I looked great. I have always been around a size 12 to 14 but gone down to size 10. Great they said, but not when you are afraid to eat as I was then. I was on Omeprazole a PPI it was not doing much good and Doctor changed me to the H2 blocker Ranitidine and that has leveled me off great. I also take the occasional Gavisgone tablet. The Gavisgon the chewable tablets, form a sort of barrier over the contents of the stomach.

    I have been drinking Coconut water, it tastes nice and not fizzy (another no no no, no fizzy stuff). Another thing I tried was Manuka Honey, I would take a large spoonful when my oesphagaes was sore, I also put it in my Camomile tea (Camomile tea soothing). I also chew gum not done that in years, but the chewing stimulates the juices in your mouth and these juices are alkaline and I feel the benefit in my oesophagaes. Some people have food that causes acid whereas in another person it causes no problem, I have read on the internet.

    I never thought I would ever feel OK in January, but I have found food I can eat and food I have to give up. I ditched dairy and use Almond milk in my cereal, I occasionally treat myself to cheese on toast, but not often. A food diary people on here have advised.

    I have been waiting since December for my Gastroscopy, I had a phone call today to say my appointment is next Tuesday. I have not decided yet whether to have the sedative or not.

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  • Posted

    stella19032 decaf tea or coffee is just as bad, try skipping the tea. I would think that rice would stick in your throat since it is so dry. I don't have the same symptoms as you. but when I doubled my dose of prilosec I started having more problems. So I lowered my dose again and it really helped.
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  • Posted

    Hi Stella,

    Which cereals are you eating? The only safe cereals (not too acidic or likely to stimulate your production of acid) are the ones that are without sugar and all sorts of additive, I mean you just want the grain: for example oatmeal, or buckwheat cream, or others like that. If you like it to taste sweet, cook it with a banana or add the banana afterward.

    Decaf tea is not good, the only good warm drink is camomile for now.

    Milk is very alkaline, so it might feel soothing at first but the problem is that it stimulates your stomach to produce excess acid. Probably because of the calcium. For now it is better to not eat any dairy.

    I see above that Ooops64 suggests Manukka honey, I personnally tried it and it hurts my stomach. I am not sure if the reason is that it is too acidic (Ph level 4, you should stay above 5 for now) or if it is its antibiotic property (supposedly good against H Pilory, which I imagine you have been tested for).

    The rest of what you describe sounds good, I am not sure about qorn but it seems neutral enough, I personally eat a lot of tempeh.

    Now for what you can eat: all whole grain cereals pure like oatmeal, rice, artisan fresh bread, plain bagel; all vegetables except cucumber, tomatoes, bell peppers, garlic, onion (irritating); lean proteins like chicken breast, lean fish, shrimps, tempeh; three fruits: melon, watermelon or bananas (all the other ones are too acidic for now).

    Cook with as little fat as you can (I count as fat cooking fat and nuts as the same thing), one teaspoon per meal, reduce as much as possible salt which is irritating and known to cause gastritis taken in excess (that is one of the few things where the doctors agree), avoid all spices and herbs including ginger as they would hurt more than help.

    If you can get some evamore water (Ph.8.8), buy some and drink it as much as possible, it will deactivate the pepsin that hurts your esophagus.

    Use a wedge to sleep.

    Don't eat more than 3 cups of food per meal to not fill your stomach too much. And drink more between meals than during meals.

    I tried many natural complements and I am happy to talk to you about them but since you are taking the PPI now I am not sure they would be helpful and I would worry they interfere with your medication or prevent you to assimilate it.

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  • Posted

    Puréed soups with butternut squash, carrots and/or cauliflower might be soothing. I like mashed normal or sweet potatoes as well (without milk or butter, just with a little bit of the cooking water.) Some people like to cook rice with excess water and eat it with the water it cooked in.

    One last thing: do not eat or drink anything 3 hours before bed.

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  • Posted

    Thanks for the advice, it's really helpful. I think tea will have to be my only vice as chamomile makes me heave. I'm a vegetarian so no fish or meat here, just has to be quorn. I don't think I could manage honey as it's always set my stomach off. I went to the gp in tears yesterday as I'm so depressed through lack of sleep and pain and all he offered me was reglan. I said I would try it and so I will.
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  • Posted

    Thanks for the advice, it's really helpful. I think tea will have to be my only vice as chamomile makes me heave. I'm a vegetarian so no fish or meat here, just has to be quorn. I don't think I could manage honey as it's always set my stomach off. I went to the gp in tears yesterday as I'm so depressed through lack of sleep and pain and all he offered me was reglan. I said I would try it and so I will.

    Ooops 64 take the sedation, it just relaxes you enough to make things ok. I tried a gastroscopy without and I couldn't manage it.

    Debra interesting about the Prilosec. Did it actually make your reflux worse?

    Ines, I was thinking of alkaline water but we don't get it here in the UK. sad

    I've woken up feeling very depressed this morning. I just want my life back. I have a 2 year old son and i don't want him to see me crying all the time. I am going to call the secretary of the consultant at the hospital and see if I can get an earlier appointment. At this point I'm even considering surgery. I don't want to live my life like this sad x

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  • Posted

    stella19032 yes it did make the reflux worse, My only symptom in the begining was difficulty breathing, I had no other symptoms until I started taking the medicine, then when I doubled it I had more symptoms, so that is why I went back to 1 pill the symptoms lessoned. I think the problem was I was not producing enough acid. My breathing is getting better. I think with the vegan diet I am going to try and wean myself off the pills I sure hope it will work, I don't want to keep taking them but then again I don't want to ruin my lungs, very difficult thing this is sad
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  • Posted

    Some people do well with rooibos or ginger infusion, it is probably better than decaf tea.

    If you want some variety in your proteins, tofu and tempeh (soy proteins) are good. You can have beans, lentils, chickpeas etc as well. I find eggs to be at the limit because of their amount of fat. I could not tolerate them at first but after a few weeks when I got better, it was ok. As soon as you can tolerate them, eggs would be a good protein for you because of B12.

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  • Posted

    Hey Debra, me too! The only symptom I had was a sore throat, then difficulty swallowing. Since I've been in meds my throat is better but stomach is worse. I asked my doctor last night if this was going to kill me and he said no definitely not, but mentally it already is. I don't get heartburn still do it's hard to tell what's going on. I just know something is not right since I doubled up. I'm going to try and cut back to 40 mg again. My doc said it wouldn't make that much difference to acid production. Like you, I think my problem is too little acid, but because I produce too little acid that reflexes due to a hiatus hernia. Double trouble ! Going to try juicing cabbage as Ines suggested in her post and see if that helps too. I'm seriously considering fundoplication as an option as if I can't control this, especially with the Barretts, then something needs to be done.

    Ines, I'll give soya a go, not had tofu for ages so it will make a nice change. I just about cope with eggs. I was going to start with egg whites and work up. Buying a juicer today, too x

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  • Posted

    Slippery Elm and DGL licorice helped me a lot for stomach pain. It does not do anything for the acid though but you have nexium for that. DGL licorice is to take 20-30 min before a meal and Slippery Elm between meals with a big glass of water. It coats the lining of the stomach and protects it. Pepzin GI works well too. Make sure to take those at least one hour after you take nexium so it does not interfere with it, or ask your doctor.
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