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Mercury
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Quote Mercury Replybullet Topic: Is eating all trial and error?
    Posted: 11 May 2011 at 12:21pm
I was diagnosed with Barrett's on 4th April, and am still waiting for the results of various other tests - and the biopsy.   While fearing the worst, I am trying to learn to live with the Barrett's.  ...but is this really how I will feel for the rest of my life?
 
I feel sick every day, Someone has put a hot poker down my throat. So far, NOTHING has stopped these symptoms- what can I do to make myself  feel a bit better? (I have the PPIs.)  
I have already found some things (foods) that definately make me feel worse and am mourning the fact that I will have no more chocolate, ever in my life....  but are there foods  that  anyone can recommend, that are good (ie rather than avoiding the bad?)
Help!!  
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RichardT
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Quote RichardT Replybullet Posted: 11 May 2011 at 12:49pm
> but is this really how I will feel for the rest of my life? I feel sick
> every day, Someone has put a hot poker down my throat. So far, NOTHING
> has stopped these symptoms- what can I do to make myself feel a bit
> better? (I have the PPIs.) I have already found some things (foods)
> that definately make me feel worse and am mourning the fact that I will
> have no more chocolate, ever in my life.... but are there foods that
> anyone can recommend, that are good (ie rather than avoiding the bad?)

Firstly the symptoms you feel are not caused by the Barrett's but by the reflux.

Barrett's oesophagus itself is without symptoms. Reflux is not, and it is the reflux that causes the Barrett's. The reflux causes inflammation in the oesophagus - and an inflamed oesophagus is more sensitive (there's a link on my ww site to research that has shown that).

Secondly it is mot widely appreciated by doctors that PPIs can actually cause bile reflux - which can be as bad as (if not worse than) acid reflux.

Some of the mechanisms by which that bile reflux happens are explained on my www site as are the steps I took to stop it (and why that works).

As to foods: some foods make reflux worse, some help to stop it attacking your oesophagus. Some are known but generally yes, it's trial and error.

However once acid and bile reflux is under control the inflammation will reduce and the sensitivity will fade. The Barrett's probably won't as it's a semi-permanent change.

So why did you get bad reflux? Understand the reasons and take care of them!
www sites and contact:
www.Torrens.org.uk/Med/
www.GreenBottom.org

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Mercury
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Quote Mercury Replybullet Posted: 11 May 2011 at 1:19pm
Thank you - I am studying your site and will talk to my GP about my PPIs.   I am 'hoping' that I get a letter from my consultant today, which may give me the chance to go and have a proper chat to him - but our post (here in rural Devon) does not get here until 2!
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chrisrob
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Quote chrisrob Replybullet Posted: 11 May 2011 at 2:30pm
Hi Mercury and welcome,

Sorry you have had to join this club but pleased you found us.

I well remember the "blow torch down the throat" feeling. But gradually the PPI's did the job of calming things down. The pain is from the gastritis caused by acid erosion to the squamous epithelium. PPI's shut down the "proton pumps" to stop acid production.

Like any "-itis", the inflammation in the throat will heal but the Barrett's (the oesophagus's way of protecting itself) is unlikely to which is why you will be regularly scoped every two years to ensure it doesn't become dysplastic (on its way to cancer).

As to foods. Different foods affect us in different ways. Chocolate was okay for me. When your oesophagus has calmed down, you may wish to experiment with a bit.

In Wessex, we have produced a book of recipes that work for others - though no-one can guarantee they'll suit everyone. It is available from this site: www.barrettscampaign.org.uk/coolbook.html or drop me an email.

All the best

Chris
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Mercury
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Quote Mercury Replybullet Posted: 11 May 2011 at 6:39pm
Thanks Chris,
 How long did it take for the PPIs to calm things down?   I am not sure that they have affected my symptoms in any way yet, eating anything causes problems - except perhaps porridge!!   I have tried eating nothing at all, but then I just get so hungry, I eat the first thing to hand.....   I have bee on PPIs since March.
Ali
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Quote chrisrob Replybullet Posted: 11 May 2011 at 7:02pm
Hi Ali,

It took about three weeks for PPI's to knock back the gastritis me -as far as I can recall.

The thing with PPI's is the way they work isn't that simple. They do have a delayed effect - though that changes. As an example, the first tablet may block 70% of the acid production after three days. That done, a second tablet taken within that time frame may only be effective in blocking about 10% of the proton pump production.
Getting the dose "right" requires some experimentation but without seeing immediate results. It is not an immediate fix - unlike calcium carbonate (eg Rennie), which neutralises the excess acid, or a seaweed blanket like Gaviscon that sits on top of the acid "lake".

Then, as Richard points out above, and as gastroenterologists are very aware, there is the bile reflux which drugs cannot treat.

I quickly got used to what foods I could not eat. For me the worst was pastry. And nearly anything I drank.

Hopefully you'll get to see your GI consultant soon and he'll be able to help you. Unfortunately, most GP's do not know enough about the condition and risks. We have a massive task ahead of us in not only educating the public that persistent reflux isn't normal, but also getting those GP's who find it hard to admit they don't know everything to refer patients to the specialists who do.

(I had the fundo operation and am drug free now.)

All the best

Chris
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RichardT
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Quote RichardT Replybullet Posted: 11 May 2011 at 7:24pm
> Then, as Richard points out above, and as gastroenterologists are very
> aware, there is the bile reflux which drugs cannot treat.

The point is that PPIs actually *cause* bile reflux.

Part of the reason for that I have explained on my site:
http://www.Torrens.org.uk/Med/Gastrin.html
but I think there is more to it than that.

Even a normal oesophagus can stand, I suspect, acid better than it can stand bile. If that's true - treating acid with a med that provokes bile reflux makes no sense!

What surprised me was that, as I gradually reduced PPIs, I eventually found a point where acid production was prevented and bile reflux was not triggered.

Finding that point (which may well be different for different people, or may not even exist) is not easy. Certainly the theory predicts, and my own experiments confirm, that PPIs should be taken in small, frequent doses. 12 hourly is too long - it requires a much higher dose than the minimum that is effective.

For me, the longest 'settling time' for PPIs seems to have been about 4 weeks: 4 weeks after I settled on my present low adequate small dose, I had 3 horrible acid reflux events at night.

There is still a lot about PPIs that is unknown! But I have yet to find any doctor who is aware of more than a small amount of the research papers that are available. We sufferers are very much on our own resources!
www sites and contact:
www.Torrens.org.uk/Med/
www.GreenBottom.org

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Mercury
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Quote Mercury Replybullet Posted: 11 May 2011 at 8:32pm
Dear Chris and Richard
Thank you both - I feel that I have been deserted by my consultant, and my GP does not know much - you guys are proving to be a life-line!   My husband and I have just sat down and agreed a plan of campaign, which I have not had until now.  i wil start being more scientific and less impulsive!
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RichardT
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Quote RichardT Replybullet Posted: 12 May 2011 at 8:29am
> The thing with PPI's is the way they work isn't that simple. They do
> have a delayed effect - though that changes. As an example, the first
> tablet may block 70% of the acid production after three days.

Do you have any documented evidence for that or is it just opinion?

I have found no studies that started with a small dose and built up. Everyone hits acid with a massive overdose of PPIs.

Yes - there is indeed evidence that PPIs have a long release time, but I find nothing on their attack time.

> That done, a second tablet taken within that time frame may only
> be effective in blocking about 10% of the proton pump production.

You still seem to be defending the opinion that the more you take the better the result. PPIs inhibit an enzyme. That is nearly a switch function. There is not a huge differnce in blood levels between inactivity and complete inhibition. Again - that's based on known actions of enzyme inhibitors rather than direct studies on PPIs. There seem to be no direct studies, only opinions.
www sites and contact:
www.Torrens.org.uk/Med/
www.GreenBottom.org

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RichardT
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Quote RichardT Replybullet Posted: 12 May 2011 at 8:41am
> How long did it take for the PPIs to calm things down? I am not sure
> that they have affected my symptoms in any way yet, eating anything
> causes problems - except perhaps porridge!

PPIs probably reduce acid immediately. That's open to discussion. However, assuming they have an immediate effect on acid - you still have an inflamed oesophagus. That will take a log time to heal.

It's a proven fact that an inflamed oesophagus is over-sensitive. So is it the food going down that is causing pain, or is it bile in the refluxate that is causing the pain, or maybe other components of the stomach secretions.

Unfortunately these things don't seem to be known or even thought about. My ulcers and inflammation took over 15 months to completely recover, the ulcers over 9. During that time the endoscopists all assumed it was incomplete acid suppression. I am sure it was not!

Probably the only way to tell how effective the acid suppression is is by continual monitoring while PPIs are taken. I am not aware of that having been done anywhere. It should have been as part of determining the minimum effective dosage and frequency.

It is distressing what holes there appear to be in medical knowledge!
www sites and contact:
www.Torrens.org.uk/Med/
www.GreenBottom.org

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