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Is eating all trial and error?

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URL: http://www.barrettscampaign.org.uk/forum//forum_posts.asp?TID=606
Printed Date: 10 Aug 2020 at 12:38am


Topic: Is eating all trial and error?
Posted By: Mercury
Subject: Is eating all trial and error?
Date 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!!  



Replies:
Posted By: RichardT
Date 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



Posted By: Mercury
Date 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!


Posted By: chrisrob
Date 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: http://www.barrettscampaign.org.uk/coolbook.html - www.barrettscampaign.org.uk/coolbook.html or drop me an email.

All the best

Chris


Posted By: Mercury
Date 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


Posted By: chrisrob
Date 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


Posted By: RichardT
Date 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



Posted By: Mercury
Date 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!


Posted By: RichardT
Date 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



Posted By: RichardT
Date 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



Posted By: chrisrob
Date Posted: 12 May 2011 at 8:55am
I'm sorry, Richard, I don't want to start an argument on an open forum.

I have discussed the issues of dosage and efficacy extensively with some of the country's top gastroenterologists. They agree that the timing of dosage throughout the day is not important and that there is a delay (of about 3 days) in their effect.

They do NOT reduce acid immediately.

Please do not make assumptions about what the medical profession knows or acknowledges.There are many learned experts who have spent many years studying and researching the points you are attempting to debunk.

It could be dangerous for an unqualified lay person to provide conflicting advice.


Posted By: johnd
Date Posted: 12 May 2011 at 10:18am
If I could gently stick my head 1mm above the parapet....

I think the original poster's issue is why the PPI's don't seem to be working. It could be just a matter of plugging away whilst the ulceration (about which I have to confess I know nothing) starts to subside. I take it you are Omeprazole 40mg, I know the gastro's do have the option of switching to another type of PPI, increasing the dose of PPI's, and adding a different type of inhibitor Rantidine (Zantac). Thats for the professionals to judge. But the acid really ought to be greatly reduced by now.

For me, a 10 or 20 Omeprazole knocks it out in under a day. Given what I read here, I am on the lookout for any side effects like bile reflux or anything else, and can't sense any. All that seems to happen is they just calm my tummy in a wonderful serene way. Still, you don't want to know about me.

Richard believes that PPI's cause bile reflux and therefore you have to careful not to take to much. I don't know whether this theory is valid or not, I have thought about a lot and I haven't made up my mind. But maybe you should ask yourself whether you are experiencing bile reflux, which should be obvious I would have thought. If you are not, then you should discuss with your GP or consultant (if you can get hold of him/her!) why your symptoms are not starting to subside.

<Duck>

-------------
55yo, diagnosed 2011 at 5cm Barrett's, 3cm as at 2013 (?), so far non-D


Posted By: RichardT
Date Posted: 12 May 2011 at 10:42am
Chris

No argument, I'm after facts. And differentiating facts from opinions!

Actually I have found a very relevant paper:
http://onlinelibrary.wiley.com/doi/10.1046/j.1365-2036.2000.00788.x/full
http://onlinelibrary.wiley.com/doi/10.1046/j.1365-2036.2000.00788.x/pdf

It basically supports both our view points - depending on how you view the results.

It's quite technical but does explain how the drugs take a time to build up, and how they have a long decay. Also how the 1 hour 'official' half-life differs from my own experimental findings.

It also finds significant differences in the various PPIs.

Although they say PPIs do have a short half life (about 1 hour), what they either haven't realised - or haven't explained is that a short half-life logically implies maximum efficiency (i.e. minimum overall drug intake) is accomplished by taking frequent small doses!

I am still after research facts that prove or disprove that. Until I find facts, the only assumption I can make is that the medical profession are also making assumptions!

Fact: I had bile reflux on high (standard) doses. I do not on frequent small doses.

It also finds that food affects absorption of lansoprazole, but less so with omeprazole and pantoprazole.

I have not finished reading it yet, it's a long and quite technical paper!

-------------
www sites and contact:
www.Torrens.org.uk/Med/
www.GreenBottom.org



Posted By: RichardT
Date Posted: 12 May 2011 at 11:37am
> Richard believes that PPI's cause bile reflux and therefore you
> have to careful not to take to much.

You read a little too much into my words!

Bile reflux is a proven possibility on Omeprazole: there are plenty of research papers that find it happening and show how and why it could be caused! I have linked to some of them on my www site.

In myself, yes, Omeprazole did indeed cause bile reflux.

Which does not imply that it is going to happen to everyone. Or that I think it will.

It also seems to be believed by the establishment that most people can't tell whether it is acid or bile that is causing their own troubles. I am lucky here - I can tell the difference.

So it's sensible to be aware of the possibility!

Bile reflux seems to be overlooked by most of the medics. Apparently because they cannot control it.

Others here have had various side effects. Logic says that to minimise any side effects, one should also minimise total intake of the drug.

Everything I have found says that for best effect with minimum intake one should take little and often. Lstest evidence is that yes, you need to take high doses initially.

I have yet to find any research that says exactly what the minimum dise rate and frequency is - that probably will vary from person to person. It's also difficult to find as there are several different time delays involved.

Yes - I appear dogmatic about this - because I am after facts. The opinions expressed do not agree with the facts I have found!

Yes: be aware of the facts and discuss with your consultant. Please let me know of any contradictory evidence. I am not concerned with contradictory opinions!

-------------
www sites and contact:
www.Torrens.org.uk/Med/
www.GreenBottom.org



Posted By: Mercury
Date Posted: 12 May 2011 at 12:13pm
I AM SORRY, GENTLEMEN, THAT I SEEM TO HAVE STARTED A SPAT WITH MY VERY INNOCENT QUESTION!
 
What I have taken from all you say is that:
a) I am on a long road to feeling better (though 'recovery' is very unlikely) and this is very much in my hands,  I must test for myself what food and drink causes me trouble and what does not - everyone reacts differently.   I have started being very scientific about it as of this morning!    I will take note and put a cross next to anything which makes me feel worse!
 
b) The Omeprazole 40mg may be causing me as much (or more) trouble than it is saving, and I must discuss this with my GP.   Certainly, it should by now have sorted my acid reflux, so it may be bile reflux that I am now experiencing.
 
c) I must try to get a more sensible dialogue with my consultant, but rely on myself and my GP to get through this.  This morning, after I pestered her, my GP has agreed to get hold of the consultant, and then I am going to see her next week to put together a plan of campaign.  
 
All this is thanks to everything I have read on this excellent forum/site.
 
So thank you - I do not feel so alone anymore, but I do find your strength of feelings a little daunting!    I think I will stay with johnd, with my head firmly below the parapet!
Ali


Posted By: chrisrob
Date Posted: 12 May 2011 at 12:51pm
I'm pleased if we are able to help, Ali.

This is a patietnts forum and non of us are clinicians which is why there is the important yellow warning banner at the top of the page.

I hope your consultant is able to proffer useful advice for your particular case.

All the best

Chris


Posted By: RichardT
Date Posted: 12 May 2011 at 2:41pm
> I AM SORRY, GENTLEMEN, THAT I SEEM TO HAVE STARTED A SPAT
> WITH MY VERY INNOCENT QUESTION

Not at all. A bit of disagreement is not at all harmful. Keeps the forum awake, I think. Questions that make people think can never be bad - though some professionals (in any profession) do take umbrage at them. But - no professionals here!

In fact, I don't think Chris and I do disagree in essense - but I am a lot more sceptical than is he. I have never tended to take opinion at face value, but always tend to ask 'why?'.

> The Omeprazole 40mg may be causing me as much (or more) trouble than it is
> saving, and I must discuss this with my GP.

For anyone on 24 or 12 hourly doses, I would always suggest spreading that. Your GP could hardly object to you taking 2 x 20mg.Or even 3 (or 4)10mg doses.

As I've sid before - there appear to be no studies to establish minimum effective dosage rate.

Good luck. But at least you have some sensible questions to ask!


-------------
www sites and contact:
www.Torrens.org.uk/Med/
www.GreenBottom.org



Posted By: bobby
Date Posted: 16 May 2011 at 10:30pm
Originally posted by RichardT

> Richard believes that PPI's cause bile reflux and therefore you
> have to careful not to take to much.

You read a little too much into my words!

Bile reflux is a proven possibility on Omeprazole: there are plenty of research papers that find it happening and show how and why it could be caused! I have linked to some of them on my www site.

In myself, yes, Omeprazole did indeed cause bile reflux.

Which does not imply that it is going to happen to everyone. Or that I think it will.

It also seems to be believed by the establishment that most people can't tell whether it is acid or bile that is causing their own troubles. I am lucky here - I can tell the difference.

So it's sensible to be aware of the possibility!

Bile reflux seems to be overlooked by most of the medics. Apparently because they cannot control it.

Others here have had various side effects. Logic says that to minimise any side effects, one should also minimise total intake of the drug.

Everything I have found says that for best effect with minimum intake one should take little and often. Lstest evidence is that yes, you need to take high doses initially.

I have yet to find any research that says exactly what the minimum dise rate and frequency is - that probably will vary from person to person. It's also difficult to find as there are several different time delays involved.

Yes - I appear dogmatic about this - because I am after facts. The opinions expressed do not agree with the facts I have found!

Yes: be aware of the facts and discuss with your consultant. Please let me know of any contradictory evidence. I am not concerned with contradictory opinions!
It's my opinion that you are not dealing with facts Richard, merely your own personal specifics. Individuals will all have differing affects from medication, I'm taking the view of the professionals on it.


Posted By: RichardT
Date Posted: 17 May 2011 at 10:58am
> Richard believes that PPI's cause bile reflux and therefore you
> have to careful not to take to much.

A bit more on that. Reading the report
http://onlinelibrary.wiley.com/doi/10.1046/j.1365-2036.2000.00788.x/full
I quote
"There is a poor correlation between maximal plasma drug concentration (Cmax) and the degree of acid suppression in studies of omeprazole. The maximal plasma drug concentration varies widely depending on the rate of passage in the gastrointestinal tract, release of drug and intraduodenal pH. However, the area under the plasma concentration–time curve (AUC) does correlate well with acid suppression"

Now a dose onece per day will lead to a high initial level in the blood plasma - (Cmax above). This blood level will fall as the liver metabolizes the drug and the "concentration–time curve", above, is what you get if you draw a graph of blood level with time.

Taking, for instance, 20mG once per day will give a certain high peak concentration a few hours later. Taking that same 20mG as 4 separate 5mG doses will drastically reduce the peak concentration but should, I suspect, result in a very similar "area under the curve". Which is the important bit!

My own experience here suggests very strongly that bile reflux and rebound acidity (and probably other side effects), are indeed related to the peak plasma concentration rather than to the area.

My findings aren't so much about reducing the total intake as about applying that amount to best effect.

It's a subject for raising this Friday.

-------------
www sites and contact:
www.Torrens.org.uk/Med/
www.GreenBottom.org



Posted By: chrisrob
Date Posted: 17 May 2011 at 12:16pm
Richard,
You say, "Bile reflux seems to be overlooked by most of the medics." Where do you get that assertion? All the medics I know take bile reflux extremely seriously.

Richard, whilst I admire your studious interest of the condition, I wonder whether this is the right forum for your theories when there may be the risk they could cause patients to disregard their specialists' advice?

You have selectively quoted above from a report mentioning "maximal plasma drug concentration" whilst missing the statement, "the duration of acid inhibition is relatively long (48–72 h)" which supports my consultants' declaration that the timing of PPI ingestion makes no difference.
I do see your point of view about wishing to minimise possible reaction to large doses but please do not espouse your theories as a course of action for others to follow: you are not a doctor.

Anyone wishing to alter the timing or quantity of their drug regimen should discuss it with their GP or GI specialist.

PS. I'm as much against taking drugs unnecessarily as the next man - probably more so, which is why I opted for fundo. And when my GP tried to up my statins, I stopped taking them altogether with the result my cholesterol levels actually fell.

PPS Give my regards to Rebecca when you see her.


Posted By: RichardT
Date Posted: 17 May 2011 at 1:26pm
> You say, "Bile reflux seems to be overlooked by most of the medics."
> Where do you get that assertion? All the medics I know take bile reflux
> extremely seriously.

You talk to a different lot than do I!

I find very little published on the www about bile reflux, other than a few papers that admit it is a problem and cannot be controlled. Can you point me to relevant research papers?

PPIs are metabolised in the liver. PPIs upset the gastrin cycle.

I was very suprised when I successfuly managed to switch to 15mg per day taken in 3 doses. What suprised me was that bile reflux stopped completely. This leads me to think that bile reflux is caused not by the amount of PPIs you take but by the peak concentration.

A high peak in the blood would result in a high elimination rate by the liver and I can only account for my good results by thinking it is this high blood level/elimination rate that causes the problems!

15mg (3 doses) or 20mg (four doses) seems to make no difference to me. If bile reflux was down to the gastrin cycle, that would make no sense. But 5mg doses will make a much smaller load on the liver!

Similarly the rebound effects seem to be to do with peak blood levels and not total amount.

I have thought if the possibility that my liver is odd. However tests that have been made have found nothing unusual about it!

The report I quote states the mechanism of PPI retention in the parietal cells and explains how these have a long retention - which al explains the long acid inhibition duration.

-------------
www sites and contact:
www.Torrens.org.uk/Med/
www.GreenBottom.org




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