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PPI misery

Buffafly profile image
48 Replies

This is only loosely related to AF so I hope nobody objects. When I had my last episode of AF it was accompanied by a pain at the base of my throat. As this sometimes happens when my heart is stressed I blamed it on the AF, but when it continued for several days afterwards I began to think it might be reflux pain which of course can be associated with AF. I made the mistake of mentioning this to my GP who leapt into action with a prescription for Omeprazole although I told her that Lansaprazole had given me diarrhoea. I could hardly refuse to take it but wish I had. My digestive system went into meltdown with a very rapid transit through my stomach leaving me with hunger pain and nausea followed by dreadful gurgling drain sounds and finally bowel cramps early in the morning. I stuck it out for a few days then gave up. When my system seemed to have recovered I stupidly thought that must have been a coincidental bug so had another try which was worse and included a sort of ‘hot wash’ sensation in my stomach. And after I stopped my system didn’t really recover so I kept getting hunger pangs which I don’t normally do and had to keep snacking. Then last weekend I went down with a stomach virus which I wouldn’t wish on my worst enemy and still feel pretty miserable. I’ve never had anything nearly so bad before so I’m putting the blame firmly on the PPI changing my gut balance. After the lansaprazole I ended up in hospital with diverticulitis so I suppose it could have been worse.

The only upside is that although the bug brought on AF initially I am now in NSR after being Unclassified for some time.

Has anyone else had this extreme reaction? I know people take PPIs for years so I’m wondering if I had the effect because I didn’t need them. Any ideas?

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Buffafly profile image
Buffafly
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48 Replies
mav7 profile image
mav7

Congratulations on being in NSR.

Do you have a history of digestive issues, ulcers, esophagus issues, etc ? If so, suggest asking GP for a referral to a Gastroentologist.

Buffafly profile image
Buffafly in reply tomav7

I have IBS and diverticular disease which I had been coping with very well recently 😕

Cavalierrubie profile image
Cavalierrubie

From your post, l don’t think taking 2 tablets would change your gut balance so quickly. It does sound as if your stomach bug was incubating. A virus can do this and take 3 weeks to rear its ugly head. Having said that, the Omeprazole probably does not suit you if you are unable to take Lanzoprazole, as they are related. Omeprazole doesn’t suit everyone and it does say on the leaflet side effects can cause gas, bloating etc., I have to take Omeprazole to protect my stomach from my anticoagulant as l had stomach issues before AF. It was either stop Warfarin or Omeprazole!! If you are still having problems after your stomach has settled then l would go back to GP. In the meantime Gaviscon liquid might help.

Buffafly profile image
Buffafly in reply toCavalierrubie

I started the PPI on the 1st June. It is a thought the medication may have stirred up a problem that wasn’t evident before. I do take Gaviscon on the rare occasions I have reflux.

Cavalierrubie profile image
Cavalierrubie in reply toBuffafly

Sorry Buff, l seemed to have misread your post. Very worrying for you, so perhaps see a Gastroenterologist to get some answers. The GP seems not to be helping you.

50568789 profile image
50568789 in reply toBuffafly

Been on Lansoprazole for years, no problems, but couldn't tolerate omeprazole. Gaviscon is my other crutch.

Jalia profile image
Jalia

That sounds pretty awful. I've been taking Lansoprazole for quite a few years for acid reflux with no untoward effects.

BobD profile image
BobDVolunteer

Personally I will never take any of these dreadful drugs. I was prescribed an "azole" about forty years ago when I first had AF though it was never diagnosed as such. My Gp decided that the "bubbly feeling" I had was stomach related and insisted I took them.

The results were perhaps not qute as violent as yours but I do understand and also eventually discovered why they should not be taken long term. Suffice to say there is plenty of info out there and even a Mayo Clinic paper on how to come off them safely.

My GP knows better than to ever mention them to me now and she wasn't even the culprit backalong.

CDreamer profile image
CDreamer

How horrible for you Buff. You know my feelings on PPI’s and yes I do think they do more harm than good for most people and I believe that is now widely recognised. I’ve had numerous scripts thrust at me by all sorts of specialists and never taken one, nor will I ever.

I only know that when I have been in that situation the only help is starving for 2-3 days, water only or, what works well for me, liquidised water melon so that’s what I exist on until everything settles. Sipping warm/hot water also helps and avoid all cold drinks.

Hope you feel better very soon.

Buffafly profile image
Buffafly in reply toCDreamer

I’ve done the starving 😂 Liquidised watermelon sounds lovely if I hadn’t given my food processor to my granddaughter, much nicer than dioralyte which the 111 dr prescribed. He also suggested flat lemonade or similar (7up is the best because no nasties) but my daughter had a very trying time finding anything that wasn’t ‘Lo-Cal’ - it seems almost all fizzy drinks now come with aspartame and M&S had exactly 1 ‘free-from’ lemonade.

Desanthony profile image
Desanthony in reply toBuffafly

I have noticed that nearly all the tonic waters are low cal now. My wife was recommended to drink ginger ale when she had problems like yours. A few years ago you could find orange and lemon dioralyte - they do work well but now only the black currant around - though I did spy a children's one flavoured with strawberry. I love black currant but the dioralyte black currant seems an awfully funny flavour.

37Polly profile image
37Polly in reply toCDreamer

CDreamer, Interesting you comment on self starving. Many of us just call it fasting, and it can be really good for your body. I was diagnosed with colitis after years of suffering almost ten years ago. Also had fierce reflux and took PPIs, unsuccessfully, and strong prescriptions for the colitis, after colonoscopy diagnosis, and was told it was permanent. I began fasting, daily working up to 18- 20hrs, occasionally 24 hrs. It took almost three years, got better and better. Now eat 1 meal, or two small meals in 6-8 hr window and have had zero gut issues for almost three years. Take no meds for stomach, after years of hospitalizations, bloody diarrhea and misery. Eat a basic no grain, no sugar, low carb diet and if my afib would disappear I would say perfect health.

May not work for everyone but I am grateful and my retired gastroenterologist is in disbelief. Urged me to never stop my meds. Haven’t taken any for gut in three years now. All issues gone.

CDreamer profile image
CDreamer in reply to37Polly

My story parallels yours, ulcerative colitis from early age, managed to heal myself through fasting and limiting food intake back in the 1980’s after I was told I would need surgery - no way was I going to have that! I now very, very rarely have any gastritis problems.

37Polly profile image
37Polly in reply toCDreamer

I wonder why this isn’t recommended more. Feels miraculous to me. Thanks for your comment.

CDreamer profile image
CDreamer in reply to37Polly

Lack of education for doctors, push by pharmaceutical companies, people wanting quick solutions instead of changing their habits. many dual trained doctors do try but it takes dedication, education and time and very few people will commit to those changes and even then there are some with particular issues, as already described, for whom it probably is the only option.

Colitis is a very different issue to problems in esophagus or stomach ulcers.

Ppiman profile image
Ppiman

PPI tablets seem to arouse a peculiar response in a very few people who have reacted badly to them. I say peculiar since they are, for example, less likely to cause serious issues than, to pick two pertinent examples, DOAC or anti arrhythmic drugs.

There is a small percentage of people who metabolise drugs differently and who will react badly to them. This can be for various reasons. One is an idiosyncratic difference in their liver enzymes, caused either by liver disease or genetics; another is a peculiar immune response that sets off an allergic reaction. Outside of these, there are a range of other possible causes of side effects.

In the case of PPI medicines, taken long term, there is also a small group in whom PPIs will block intestinal uptake of magnesium. This leads not only to hypomagnesaemia, but has the additional effect of reducing uptake of B12 and calcium. These are serious side effects but are fully reversible on stopping the PPI. Taking supplements to counteract the depletion fails since the PPI blocks the uptake receptors.

Fortunately, for the majority who take them for proper medical reasons, PPI drugs offer a uniquely effective way to treat their reflux disease by preventing acid regurgitation into the oesophagus with its potential for disastrous long term effects.

When a doctor suggests taking a PPI long-term for reflux disease or similar (e.g. a propensity to stomach and intestinal ulceration, for example), then I would ask whether the drug is truly necessary, what alternatives exist and what can be done in the unusual event that it leads to important malabsorption issues.

Steve

Cavalierrubie profile image
Cavalierrubie in reply toPpiman

Steve you say PPI’s block vitamin B12. I have also read this in various literature. I was borderline B12 a year ago and supplemented with this vitamin whilst taking a PPl. Last month l had to stop taking it because my blood test showed that my vitamin B12 was too high. So how does that work out? I agree there is much bad press regarding this drug. We only hear the negatives from people who are not medics., probably not taking them and have no idea of others medical history, or the problems and difficulties of stopping this drug. I agree if you can control your problem by other means it is always better than any drug. Some may have serious issues that could turn into something more sinister if not treated. My grandfather died of ulcers, despite diet etc. Had these drugs been available he may have lived longer and pain free. Stomach pain from various conditions can be excruciating and unbearable.

Buffafly profile image
Buffafly in reply toCavalierrubie

I would be very pleased if I could tolerate a PPI because stomach ulcers run in my family and I am aware of the dangers of prolonged reflux. I took ranitidine for years until it was banned.

Cavalierrubie profile image
Cavalierrubie in reply toBuffafly

Buff, If you ask to see a Gastroenterologist they may be able to help. Have you tried Famotidine the H2 blocker? I have taken it on and off when l have had a flare up of problems. It gives me a headache, but does the job after a few days and l can stop taking it. Let us know how you get on. My mum had diverticulitis so l know how awful that is to tolerate. Let us know how you go.

Buffafly profile image
Buffafly in reply toCavalierrubie

Thank you very much for the suggestion - I hadn’t heard of Famotidine. I shall get back to my GP. I wish I could have half an hour to run through my ‘niggles’. I need to see Dr Lucy Pollock! (Famous gerontologist who works in our area)

Cavalierrubie profile image
Cavalierrubie in reply toBuffafly

Yes, go for it. X

Ppiman profile image
Ppiman in reply toCavalierrubie

I’m on your side completely. I only posted as once again there were some unhelpful posts on the forum about PPIs. Compared with anti-arrhythmia drugs, well…

The consequences of acid reflux can be catastrophic. My daughter in law is a nurse on a ward that has many such cases daily.

I was borderline B12 but, on retest, normal. I think it is difficult to measure this vitamin and the limits aren’t fully clear. My GP said all was fine and as it should be.

Steve

Cavalierrubie profile image
Cavalierrubie in reply toPpiman

There are too many negatives regarding this drug. They HEAL ulcers which can kill as can some other stomach conditions. They can prevent oesophageal cancer from acid reflux and hiatal hernia………. Some chemotherapy patients have to take them. .All drugs have side effects and advantages and disadvantages. Sometimes it’s a life or death decision and unless you have been there, it’s unwise to criticise those that have no choice but to take PPI’s. If the drug was that dangerous, it would be banned as Ranitidine has. I know you have to take this drug Steve. As with all drugs we take, we are monitored. I opt for quality of life for how long l have left.

Ppiman profile image
Ppiman in reply toCavalierrubie

Well said, indeed.

Steve.

Cavalierrubie profile image
Cavalierrubie in reply toPpiman

PS. I missed something! They also can stop stomach and bowel bleeds, which is a plus for us taking anticoagulants. Thought l would add this for others to read who are worried.

Nonameme profile image
Nonameme in reply toCavalierrubie

I would just like to say ‘not all of us are monitored’ I know that from personal experience’

Cavalierrubie profile image
Cavalierrubie in reply toNonameme

Ok. But it is up to the individual to make sure they are, if they are worried and see their GP.

Singwell profile image
Singwell

A few thoughts from a long term acid reflux sufferer. Yes, that pain does sound like reflux. Check out the British Voice Association free leaflets on this subject and acquaint yourself with the 2 types - GERD (heartburn) and LPR (silent reflux).

A core aspect of acid reflux that many GPsdon't get is that you can have it due to LOW stomach acid, not high. We need acid to assist the digestive enzyme pepsin in its essential job of digesting protein. Remove the acidity in the stomach and the digestive process is messed up. PPIs long term are therefore not good for the digestive system, which btw is responsible for around 80% if not more of our immune system. So these factors might be worth looking into for a longer term solution you.

I pretty much healed my digestive system by following the guidelines in this book plus following the 'rule' of eating a minimum of 30 different plant foods a week. Occasionally I take a Gaviscon Advance before going to bed - you can buy over the counter in liquid or tablet form. It's an alginate so should be safe to take re interactions. Don't drink or eat anything after your Gaviscon.

Hope this helps!

The Complete Acid Reflux Diet book
Responsable profile image
Responsable in reply toSingwell

We were writing in parallel, at the same time... So nice to know that somebody shares my views.

Buffafly profile image
Buffafly in reply toSingwell

I will add it to my diet bookshelf - Fodmap, Coeliac, Diverticular disease…..thanks for the suggestion ☺️

Singwell profile image
Singwell in reply toBuffafly

You're welcome. From the book I found legumes can be better tolerated if they're tinned. So I always have plenty in my store cupboard - lentils, cannellini beans, butter beans and chicken peas. Great standbys for providing roughage, and protein in plant form. We do eat meat and fish at home because I'm hypothyroid and need lots of protein but I'll often add half a can of legumes. Saves money too!

CDreamer profile image
CDreamer in reply toSingwell

Agree with every word!

Responsable profile image
Responsable

When acid reflux starts, nearly everybody (MDs and the patients) will connect it with too much stomach acid - the MDs will prescribe PPI medication, and the patients will consider to be well treated for the problem in question. But ... the actual situation is very different of suspected. Namely, GERD comes to exist together with the REDUCTION in stomach acid secretion, AND in combination with neurological problem of too low signal to the sphincter muscle closing the entrance into the stomach. This way, despite reduced acid production, there is acid reflux and all the consequences it can have (Barrett's esophagus etc.).

Reduced acid production, like in your case, leads to poor disinfection of the food taken in, so negative bacteria, still alive (some of them), get into the small intestine and multiply there, causing SIBO, bloating, and finally diarrhea. Obviously, taking PPI will make the thing still worse via further reduction in acid production.

How will you know that you have reduced acid secretion? If, after the food intake, you feel like you have a "brick" in your stomach, it means that the food is still dry (lack of acid) and the stomach has problem to treat it mechanically. Adding some wine will help, lol, but the reflux problem will persist.

Buffafly profile image
Buffafly in reply toResponsable

Interesting …..

Efka profile image
Efka in reply toResponsable

Great share! I agree

Cavalierrubie profile image
Cavalierrubie in reply toResponsable

Sorry, but l don’t agree that you can diagnose yourself of having low stomach acid. This has to be a special test undertaken by a Gastroenterologist. I have been taking PPI’s long term and l have not experienced any of the things you have highlighted. I have a Gastroenterologist who monitors my health. I notice from your profile that you have not stated acid reflux etc. as one of your ailments? As stomach conditions can be a serious matter, l think diagnosis, treatments and decision making should be undertaken by a medical professional who is experienced in that field. Dissection can be done with all conditions and medications. All drugs are toxic to the body and usually do one thing and give you another. I agree that it is good to have a natural approach in healing yourself, but unfortunately this is not always possible, especially those of us with comorbities, or medication, probably causing interactions. With all conditions it can either be mild, chronic or severe and different for each individual.

Responsable profile image
Responsable in reply toCavalierrubie

Of course, it is your right to disagree... I would like you to know only one thing - every word I have written is correct. I am not "trolling" here, I am trying to give some new information.

As for the "brick" in the stomach, you may be sure that it is a very firm sign of low acid secretion. How low...? It is something your GE will be able to tell you. Not everyone has it, but if you have it - you for sure do not have enough acid in your stomach. In my life, I had it in only one occasion - not very nice experience. Some people may have it frequently...

Cavalierrubie profile image
Cavalierrubie in reply toResponsable

I am sorry but l have no idea or symptom of a “brick” in the stomach and would not rely on that method of diagnosis. I would prefer to hear your words from my Gastroenterologist to believe they are correct. I have never heard your theory to be true, but would stand to be corrected. Could you please tell me where you obtained this information? This is a good debate and open discussion and l respect you for trying to help. You are fortunate to have only suffered once with this. Some of us have it continually, caused by hiatus hernia, some other dysfunction in the gut, medication that is harsh on the stomach lining or stress and anxiety. I have a large hiatus hernia. Without PPI’s to protect my stomach, l would not be able to tolerate an anticoagulant. One size does not fit all.

Responsable profile image
Responsable in reply toCavalierrubie

Singwell wrote: " A core aspect of acid reflux, that many GPs don't get, is that you can have it due to LOW stomach acid, not high."

At the time I was writing my comment, I had not seen her comment, and was later so glad that somebody else had come to the same conclusion as me. My understanding of this problem was built on the base of almost 2 decades long personal research (not from medical field). Not going to bother you with my "results" - it would not be accepted anyways.

Cavalierrubie profile image
Cavalierrubie in reply toResponsable

Thanks Responsable. Interesting to hear your views and research, but there is also a condition of high acid which can lead to serious conditions such as ulcers and inflammation and has to be treated. Take care.

Singwell profile image
Singwell in reply toCavalierrubie

Just been reading this debate with interest. You're quite right that both high acidity and low acidity in the stomach may cause reflux. I have had a diagnosis btw - my stomach doesn't make acid because I had my vagus severed at the digestive end aged 19. Responsable isn't quite clear on the sphincter issue. Although it may be the case that the sphincter open due to neurological issues, it's more likely that when the digestive process is inefficient a lot of CO2 is released during the process which in turn pushes up onto thr sphincter, causing it to open and eventually weakening it. For pepsin to operate it needs acidity, stop the acid production and you're in trouble. You then have to rely on the acidity of food you put into your system. Which kind of makes sense re the wine. Except...wine is highly acidic so if you already have GERD or LPR then it's more likely to exacerbate it. Modern scientific research into the gut is making great strides in pur understanding which personally I'm.grateful for.

Cavalierrubie profile image
Cavalierrubie in reply toSingwell

Hi Singwell. My, how the human body works is very complex indeed. I understand what you are saying. I have had tests for my production of acid in the stomach via my Gastroenterologist. I don’t have low acid so have no experience of it, but l have been on PPI’s long term and they have not caused this problem, as it has been claimed they do, neither have they made it worse. As with most drugs they are ok for some and unsuitable for another. I find it sad that people are so quick to voice the negativity of PPI’s. For some these drugs are life-savers and still very necessary. The pain from ulcers, for example, would make me first in the queue. All medications have a risk factor and PPI’s compared to some drugs are very mild in that respect. I agree, much more research is needed and we all welcome that. Thanks for your reply and keep well.

Karendeena profile image
Karendeena

Hi there, yes me!! 4 years ago I was diagnosed with polymyalgia just after my diagnosis of AF!

As a result I was put on steroids and had to take a PPI to protect my stomach. I suffered exactly like you with all kinds of digestive issues. I changed to a different stomach protector which saw an improvement.

I am now off the steroids but sad to say my digestive system never went back to normal and I still swing from constipation to diarrhea.

I have had a CT colonoscopy and all they could find was mild diverticulitis.

I was perfectly alright before I took the dreaded PPI

Cavalierrubie profile image
Cavalierrubie in reply toKarendeena

It could also be the after effects of steroids that is causing you problems. They are dreadful drugs to take too and can play havoc with bodily functions, but again are necessary for some of us. I have never heard of this with PPI’s.

Nonameme profile image
Nonameme in reply toKarendeena

I can second that, me too but no help from GP who told me hospital was wrong even though I nearly died from rectal bleeding he increased my prescription for Lanzanapole and told me take as much as you want it will do no harm! My B12 is classed as normal 181 danger level in this area is 180! Treatment denied. ‘Never heard of Silent Reflux’ even though he could not hear me due to gruff to disappearing voice!All neurological and other symptoms put down to Diabetes type 2. And as for my chronic Anemia’you have lived with this for over 30 years so is doing no harm !’

I could go on but never visit now.

Danceawaytheblues profile image
Danceawaytheblues

I took medication for my acid reflux for many years. I started to get excruciating pains after eating, and test`s could not find the reason. Eventually I took myself off of the prescribed PPI and two years later I still feel good, I can tolerate most foods. Just my story. (I take Gaviscon if symptoms are unbearable, rarely have to use it though).

51-1-64 profile image
51-1-64

My Husband started a chest infection 2 days ago …that night I found him on the floor of the kitchen …could it have been a reaction of the infection & AF ?

Qualipop profile image
Qualipop

I can't take PPIs at all. I get famotidine which works differently

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