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miljake
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Quote miljake Replybullet Topic: Just Diagnosed and Nervous
    Posted: 12†Aug†2018 at 10:46pm
Iím new here and very anxious about my recent diagnosis. Iím sorry this is long but I donít know how to relay my situation without writing the full story. Iím 72 years old, fit and eat well. Iím not overweight, never smoked in my life and have stayed relatively healthy.

Eight years ago, I was diagnosed with Gerd and was put on a PPI. I took it for a while but didnít like how it made me feel so I decided to self-treat myself with various natural remedies, off and on. Last month I went in to see my doctor because I wasnít feeling well; heartburn was terrible, etc. I had a scope and his initial viewing and diagnosis was mild esophagitis. A week later they called me back in to discuss the pathology report. The path report reads I have Barrett's with dysplasia (in the crypt). There isn't any grade to the dysplasia. He tells me itís not overly concerning to him. About 1/2 to 1 inch of my esophagus is affected. He wants me to take omeprazole (40mg) in the AM, forever. He had no response on anything alternative such as DGL, Aloe, Slippery Elm, etc. and told me to take antacids in between. He said he would see me in a year. I insisted he do another scope in three months, but he said ethically he shouldn't be giving me a scope this soon but because of my anxiety he would do one in six months. He saw how nervous I was and said that he sees at least 5-6 patients a month with this diagnosis. And I will probably die of something else - sure, with this omeprazole I probably will of a side effect!

I don't know what route to take; I'm now taking DGL and aloe, drinking alkaline water but I don't think it's helping much. My symptoms seem to subside after I take the omeprazole and I'm usually okay for a short time. Then the symptoms start again; the heaviness and burning, etc. By the time I go to bed, I'm miserable. I raised my bed (I have an adjustable bed) but it doesn't seem to be helping. I'm getting approximately 3-4 hours of sleep. I'm eating okay but not much and have lost a lot of weight because of this. My husband thinks the natural remedies may be interfering with the omeprazole and it may not be working to its full potential. Does that make any sense?

Please can anyone put this in perspective and help me. The dysplasia has me so scared. And I feel it's all my fault for not taking the Gerd diagnosis seriously. The doctor understands my anxiety but feels I'm blowing this out of proportion. Is there anyone out there in the same boat as I am. Can you offer any advice or alternative treatments and when I should take them? I really need some help. I understand from reading Dr. Google that dysplasia cannot be reversed and your chances of getting cancer because of dysplasia is 60 percent. I'm afraid I can develop cancer before I see him in six months.
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chrisrob
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Quote chrisrob Replybullet Posted: 13†Aug†2018 at 6:06pm
Hi and welcome to the forum,

Sorry not to have been able to reply sooner: it's quite a busy time - as usual?

PPIs are the best course of action for acid reflux. You are not specific about what you didn't like about how PPIs made you feel.
It may be a different version of the drug may suit you better?

Despite propagated scare stories, PPIs are amongst the safest drugs there are. Most of the scare stories are totally unfounded. Read this chapter in the Down With Acid encyclopaedia which attempts to explain things simply and this addenda where evidence for and against PPIs may be found.
You certainly will not die of a side effect of taking omeprazole! They may actually save your life!

Most people diagnosed with Barrett's will be on PPIs for life. They have been shown to probably reduce your risk of progression to cancer by around 71%.

Although the addition of some "Natural remedies" may relieve some heartburn symptoms, there is no evidence they work and may actually do more harm than good.

See this chapter from the Down With Acid book which discusses supplemental therapies. N.B. They should never be thought of as alternative treatments. Also, if you do take these natural addtitions, discuss with your pharmacist to ensure there are no possible harmful interactions with any medication you are taking.

Deglycerised Liquorice and Aloe Vera may help act as a soothing balm to calm the fire of oesophagitis but they won't reduce the acid that causes it.

Alkaline Water is a total myth. It is publicised by a voice specialist who made her name by coining various phrases, principally LPR (= Laryngo Pharyngeal Reflux) to describe what is properly called "Extra Oesophageal reflux" when reflux from the stomach nt the oesophagus can travel full column and breach the upper sphincter whence it can aspirate into the respiratory system.

(See this chapter in Down With Acid.)

The doctor in question had shares in a company that made water ionisers and is to date the only peron to have produced a paper to support her claims that alkaline water is beneficial whilst many other papers exist that show otherwise.

Whilst I could post many links to debunk the claims of alkaline water, I'll just use this article: "Snake oil on tap" to illustrate the point.
The same doctor, who started the Voice Institute of New York, makes a fortune out of selling her Dropping Acid range of recipe books. (N.B. "Down With Acid" is deliberately free - I'll send you a printed copy if you want - as it is a fully researched compendium of knowledge rather than a product of another snake oil salesman.)

A few months ago, the newspapers reported a study showing the Mediterranean diet was better than PPIs in reducing LPR. What the study actually found was the diet was no worse than PPIs - but PPIs reduce acid not reflux. (See this study "Prevalence of Extra-Oesophageal Reflux symptoms amongst acid refluxers and perceived efficacy of regular medication and reflux reduction intervention".)
But guess who sponsored the Mediterranean diet paper? - The Voice Institute of New York!

Remember. Just because someone dons a white coat and calmly talks "science" at you, doesn't make her any less of a snake-oil salesman.

Barrett's Oesophagus is a permanent addition to protect your oesophagus against acid refluxing. If you do have any signs of dysplasia, you need to be told more about it and discuss eradication by radio frequency ablation therapy.

Finally do be careful Googling the condition. There are far too many sites out there provided by those with little knowledge but looking to gain much from the gullible who visit them.
Always check stories to see if they refer to proper peer-reviewed research or whether the bottom line is they wish to sell you something.
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miljake
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Quote miljake Replybullet Posted: 13†Aug†2018 at 11:38pm
My goodness, thank you Chris, that's a lot of info. I'm seeing the doctor on Friday; The omeprazole was making me sick; loss of appetite and a general feeling of sickness. Plus the burning and heaviness in my chest was relentless and it didn't seem like the meds were doing much to keep the burning down.

I spoke to the nurse today and she switched me over to Dexilant. She remarked that sometimes it's trial and error until we find the one that works.

In terms of the dysplasia, I would welcome your thoughts. He told me that he couldn't even grade it because it was a non issue which I took as being small - of course my mind was in a whirlwind so I didn't grasp a lot of what he was saying. I'll talk to him more on Friday. I mentioned ablation and he said I was no where near that. So my question is should ablation be considered regardless of dysplasia "size". And can the dysplasia be eliminated completely or is it there forever. Also, he only took one biopsy and when I questioned him on it; he told me that I have Barrett's so it's there. Upon his visual exam, he saw mild irritation. That was probably the reason he didn't take more samples. He was very surprised when the path report came back.

I would be interested in your book - I live in the states. Can I purchase this on Amazon?

You know I read stories where people write that they "cured" Gerd going the natural route such as aloe, DGL, ginger, and so on. There are tons or alternative suggestions out there but to your point, I'm making myself crazy reading the internet. This has become a black hole in my life. One final thought, when reading the different posts, I don't read others with dysplasia which of course, has me more concerned as it's not a normal condition!   But I want to thank you for caring and responding to my post
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chrisrob
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Quote chrisrob Replybullet Posted: 14†Aug†2018 at 2:54pm
You do need to find out more about your dysplasia diagnosis.
Are you sure it was dysplasia (pre-cancerous cellular changes) and not dysphagia (swallowing disorder)?

If it was dysplasia, it would have required a minimum of two different histopathologists and they would usually have requested more biopsy samples. There are three identified levels of dysplastia diagnoses: Indefinite for dysplasia (which requires a follow up endoscopy for more biopsies to be harvested, to get certainty), low grade dysplasia (which requires monitoring every 6 months or treatment) and high grade dysplasia (which requires treatment).
See this chapter in down with Acid.

If he only took one biopsy, it seems to indicate your Barrett's is a very small area. The guidelines call for 4 biopsies quadrantically every 2 cm along the suspected length of the lesion. (See here.)

Barrett's may be visually suggested but needs histology confirmation for diagnosis. Unfortunately, inflammation (oesophagitis) can make the visual detection quite difficult.

(Image courtesy of Medtronic)

Ablation therapy should be routinely offered for High Grade Dysplasia. Usually
Endoscopic Mucosal Resection and / or Radio Frequency Ablation.
For Low Grade Dyslasia, it should be discussed.

(Ablation therapy to get rid of non-dysplastic Barrett's, although possible, is not recommended as the risks from the treatment may be greater than the risks of leaving it.)

If you message or email me using chris@chrisrob.co.uk a postal address, I can put a copy of Down With Acid in the post for you.
It is not currently available on Amazon since it doesn't have a fixed price. It is FREE, though voluntary donations are welcomed - details will be sent with the book.
It is quite probable the book will be reprinted (with some minor additions reflecting the very latest research) in a year's time. That edition may well carry a recommended retail price so it can be sold via Amazon.

There are many stories and websites that claim you can cure your GERD by particular diets or supplements. Many charge you for the chance to download a rather questionable file that benefits the seller more than the purchaser. For some these "diets" and "secrets" may appear to work but usually more because the person following them is taking more care about how they eat - and how we eat is far more important than what we eat in the control of acid and reflux. (See this chapter.)

There is even one person who claims he has the secret of how to cure your Barrett's through diet. Barrett's is a permanent addition of cells - it is not something that can be "cured"! So my advice is don't waste your money clutching at straws.
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miljake
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Quote miljake Replybullet Posted: 15†Aug†2018 at 12:19am
Looking at the pictures of my initial endoscopy I would say it's the more in line with your first photo; diagnosis on viewing was grade a esophagitis in the gastroesophageal junction. So his findings before the pathology report was mild inflammation. The finding of dysplasia in the crypt was low grade - in fact he said he couldn't even give it a grade. As I stated prior to this post, my head was swimming so I didn't ask many questions; I plan to do so on Friday. When I mentioned surgery or ablation, he said I wasn't even close to that. But of course now I question his diagnosis because he only took one biopsy. This gastro doctor has been in practice for almost 30 year. His bedside manner isn't great but his personality has little to do with his credentials. I will post again on Friday after my appointment. I've read some of your links, very interesting and informative. I'll send you a separate email. Thanks
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miljake
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Quote miljake Replybullet Posted: 17†Aug†2018 at 7:41pm
I met with the doctor today to discuss how I feel taking Dexilant. I would say I'm better by 80% but I still get breakthrough heartburn at night after dinner. I've tried Zantac and Maalox before bed but it doesn't help and I still wake with burning in my chest. The doctor now wants me to take 60mg before breakfast and 30mg before dinner. That's a total of 90mg a day - at first he told me to take the 60mg twice a day but I questioned the dosage. I don't know what to do; 90mg seems like a lot and the long term damage this level of PPI can do is well documented. But he says I have no choice.

We talked about the dysplasia; this bothers me more than the Barrett's. He explained is precancerous cells, it's a small amount in the crypt (bottom) and it's so small that he can't grade it. But it's there and there's no way to predict if it will get worse. And I'm no where close to ablation were his words. Oh, and the dexilant is very expensive - he told me to try a Canadian pharmacy! Any thoughts on this - talk about being so confused.

How to I prevent the stomach acid from damaging my esophagus any further.
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chrisrob
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Quote chrisrob Replybullet Posted: 18†Aug†2018 at 10:37am
There are many different PPI drugs and research has found all are as effective as each other in reducing acid when taken in equivalent dose. See the equivalence table here and scroll down to the bottom of the page for US drug prices (though a few years out of date).

Dexilant (dexlansoprazole) is an enantiomer of lansoprazole.
Without wishing to get too technical, the two enantiomers (S & N) of a drug contain molecules that are mirror images of each other though otherwise identical and work identically. In most drugs you get a 50/50 mix of S and N enantiomers.
Omeprazole was the first of the PPIs. When it was running out of patent about 30 years ago meaning cheap generic versions would be aalable in the market place,, it's manufacturer, Astra Zeneca decided to refine out just the S-enantiomer which they marketed as esomeprazole (Nexium) and attempted to show it was better than the omeprazole on which it was based - though there is no reason and some of their research was rather skewed. However, AZ continued to make massive profits from their "new" drug.
When lansoprazole was goiing out of patent, its manufacturers tried a similar ploy and isolated the N (or dextra)enantiomer, dexlansoprazole (Dexilant) which they marketted as being better. However, FDA made them remove that advertising as no research evidence showed it to be better.

Dexilant may be newer and more expensive than the lansoprazole it was refined from but is no better than the cheaper alternative. Faced with expensive bills for Dexilant, I would consider trying the cheapest generic lansoprazole instead.

As I have said before, forget the scare stories about PPIs causing harm. They are the most commonly used drugs worldwide and have been in use for 30 years which is why they have been the subject of so much research. Some research has found some correlation between those taking PPIs and those suffering from some conditions. (Just as anyone could do research to show a correlation between umbrella usage and rainstorms. Umbrellas don't cause the rain!)
Journalists liking scare stories are far more likely to focus on research that shows those with heart problems are more likely to take PPIs than the research that shows PPIs are probably keeping thousands of people alive by reducing their risk of developing cancer.

Your doctor can only prescribe more acid suppressant medication. It is the best (and only) weapon in his arsenal to deal with the acid refluxing. It is up to you to try and reduce the reflux itself through lifestyle modification.

1. Lose weight, if necessary.
2. Avoid overfilling your stomach - eat little and often, slowly keeping your body upright, chewing well.
3. Leave at least 3 to 4 hours between your last meal and going to bed to allow your stomach to empty.
4. Raise the head of your bed on blocks by 6 to 8 inches so gravity will help prevent any residual stomach contents from flowing uphill.

Your heartburn is the pain from oesophagitis that will be allowed to heal over a period of weeks if you ensure you take the acid suppressant medication.
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chrisrob
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Quote chrisrob Replybullet Posted: 18†Aug†2018 at 10:39am
Also meant to add, Dexilant is not available in UK as it is considered too expensive and has no extra benefit to the cheaper drugs that are available. NHS guidelines say to use the lowest price drug that works.
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miljake
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Quote miljake Replybullet Posted: 18†Aug†2018 at 12:37pm
Thanks Chris; I do it all, I'm not overweight at all, in fact I've lost weight which I didn't need to. I don't overeat, etc and raise the head of my bed at night.
I can't afford the Dexilant and taking the extra 30mg before dinner didn't do anything; I still had an uncomfortable feeling at night and still woke at 3am with heartburn. Dexilant is hundreds of dollars in the states - a 30 day supply is $387. Even the Canadian pharmacies still charge in the hundreds.
My next option would be Nexium but if it falls in the same category as omeprazole, I'm concerned that it will cause me nausea as the omeprazole did. Feeling so hopeless at this point
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Quote chrisrob Replybullet Posted: 18†Aug†2018 at 2:21pm
Try generic lansoprazole? Or pantoprazole (protonix) seems to well tolerated by more users.
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