PPI complications: I've now had my endoscopy. I... - IBS Network

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PPI complications

Orchard33 profile image
33 Replies

I've now had my endoscopy. I wanted to find out what state my stomach was in after taking PPIs (Omeprazol) for over 5 years and an H2 Blocker for 15 years before that (the now withdrawn Ranitidine of carcinogenic fame). What the endoscopy revealed were fundic polyps which are 'accepted' as a standard side-effect of PPIs. I no longer take PPIs, trading them in for a less stressful life and slippery elm every day on my porage. I'm sharing this with you because a major consequence of damage to the fundus is the destruction of parietal cells which produce Intrinsic Factor. The loss of Intrinsic Factor leads to Pernicious Anaemia as the stomach can no longer process B12 for use in crucial bio-chemical exchanges. This is irreversible and requires injected B12 for life.

Think twice before taking PPIs. I don't know if gentler H2 Blockers have the same effect. More research needed.

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Orchard33 profile image
Orchard33
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33 Replies
Linley profile image
Linley

Blimey! What an outcome. Question how do they know the fundic polyps were not there previously

Orchard33 profile image
Orchard33 in reply toLinley

I had an endoscopy about 15 years ago. There were none then.

Linley profile image
Linley in reply toOrchard33

👍

Andann profile image
Andann in reply toLinley

Believe me they know now that its a side effect. Didnt know when first diagnosing.

Linley profile image
Linley in reply toAndann

Interesting, my endoscopy revealed small fundic polyps and I have never taken PPIs but Gastro has put me on Omeprazole for 1 month. I will question this when I have my follow up

Luisa22 profile image
Luisa22

Thanks for this post. I found it very interesting. I think PPIs have their place, but think they are over used and over prescribed. I am very wary of them.

Orchard33 profile image
Orchard33 in reply toLuisa22

I agree with you. Short term use perhaps but no more than that. I was on them for five years, unmonitored.

meadfoot profile image
meadfoot

My neighbour has been on PPIs for a good while and his recent endoscopy revealed polyps which he was told had been caused by the PPIs. They were removed during the endoscopy.

His consultant was surprised that my neighbour didnt know that polyps were a side effect of the drug!

Hi,

I have been on omeprazole for 7 years and just had endoscopy performed both ends without sedatives, fool I know! But at least I got to see the insides for myself. Frankly they don't look any different from last time. I really must start taking the sedatives, it is not very pleasant without sedatives. Interesting most people I spoke to say the clean out of the bowels was worse than the endoscopy. I bet they all took the sedative!

I'm full of polyps from end to end, but, they are mostly pre existing prior to omeprazole being prescribed. I didn't count them before or after omeprazole! I'm currently in the midst of the worst bout of IBS I have had over the last 7 years to the point I'm not eating for days at a time as it keeps the stomach settled despite all the medications I'm on to do so. Just had 2 weeks of severe chest pain and the last week of GERD/GORD whichever you prefer. Everyone around me panicked as I had 15 mini strokes 4 weeks ago. I had to offer up the diagnosis myself for the DR's to confirm, eventually. Missed my calling! Now I contending with raw lips and ulcerated mouth.

It has been an interesting month with more to come. I'm type 2 diabetic and CKD with a healthy dose of IBS thrown in for good measure.

So far what has come out of my journey is that the so called kidney friendly BP meds have in fact been killing my kidneys, with test results proving the point. GFR 38 on meds down from GFR48 previously. Last month after 8 weeks off meds, GFR 50. Now I have little choice than to take my meds or risk death, which we risk anyway by virtue of being alive. Interesting though my GFR has dropped suddenly to GFR 40 and descending now on meds again.

It doesn't really matter as the IBS is consuming me for the present, but interesting how we each are different but the same. After fighting IBS for 7 years I have decided enough is enough. I challenged the specialists yesterday to fix it or I will deploy a permanent cure, death by frustration. Strangely enough I'm getting some assistance. I'm to be fitted with a data logger to sample the reflux each time I push a button so we/ they can see what is happening in the stomach when I'm having an acid attack.

I guess the squeaky wheel really can get the oil!

Don't be too quick to dismiss anything before trying it for yourself. I read somewhere chewing gum can stop acid in the mouth. I'm always the sceptic but was/ am desperate so gave it a go. Damn if it didn't work, even the specialist looked at me sideways, but I'll be chewing as long as it does the job. What it does is trigger the saliva glands neutralizing the acid in the mouth giving relief for the moment. Apparently a little bit of lemon and honey in warn water can also soothe the stomach, yet to try that one.

Cheers

Linley profile image
Linley in reply to

Very interesting post, wish you well for the future

Orchard33 profile image
Orchard33 in reply toLinley

Thanks Linley. I will post developments.

Orchard33 profile image
Orchard33

Have done more research on H2 Blockers. There are medical articles which suggest that they do not have the same effect on the stomach as PPIs ie do not cause fundic polyps.

Andann profile image
Andann

Thanks for this, I have fundic polyps from about 10 yrs of taking ppi's. I dont appear to have B12 deficiency but will ask for that test next time bloods are due. My GP said the stomach is very adaptable and stretchy.....but if she had my stomach she would be highly annoyed at the twinges and intermittent pains and the number of times I have been to Emergency or 24 hr medics or discoveted yet another food that hurts, e.g. tea, coffee., fizzy drinks. I dont think we can sue here in NZ because of Accident Compensation legislation (no fault) but would be tempted.

As soon as I knew this I stopped taking them and manage reasonably well with low fodmap foods, low fat diet, lowish alcohol consumption, eating 4 hrs before sleep , eating slowly, trying to stay stress free etc. Not perfect but ppi's werent perfect either. My main problem originally was gerd/gord and it is probably because of a hiatus hernia as well as sensitivities. Today a friend said what worked on her reflux was /is apple cider vinegar and lemon juice with water before her evening meal. Tastes bad but works for her.

Orchard33 profile image
Orchard33 in reply toAndann

Re your doc's comments. It is certainly stretchy but clearly its adaptation to PPIs is extreme and potentially harmful. No stomach should have take such desperate measures to protect itself from toxic chemicals.

in reply toOrchard33

Forgot to mention B12. Of the last 3 attempt to get B12 injection as part of a course of B12, this country is out of B12! I refused to pay for the nurse appointment as they had waisted my time when they could have notified me they couldn't get the B12. You can't swallow enough B12 to equal what an injection can give you. None the less I'm taking B12 supplements as it is better than no B12 and it is vital for your health when you are not producing enough.

in reply toAndann

Hi Andann,

I'm also in NZ, Wellington to be precise. ACC only covers accidental not medical.

I have had to insist I'm not signed off by gastrology as telling me what I don't have isn't fixing the problem. So far they are buying into my problems, particularly as I have made it clear the alternative is death by starvation in about 3 weeks.

The only way to get traction in our 4th world health system is to be vocal and push for what you are entitled to get. I have discovered being vocal and well informed is getting attention. I don't care how many black marks I have against my name, they can't withhold what they are not giving me anyway.

If the specialists had bothered to take my unprofessional advice and performed fecal-transfer this could have all been fixed many years ago. Interestingly they tell me they don't do fecal-transfer here, but are taken back when I remind them, yes you have and in this very hospital, all recorded by TV and at the time I started down this IBS trip. Would you like me to get the footage to prove it? They all go quiet.

My stomach was destroyed with 2 successive and massive doses of antibiotics to save my life. In hindsight I may have made the wrong choice in saying yes! What I have gone through is utter desperation with until now, little or no help from anyone in the health system. Correction, I did get help from gastrology in the early days, they told me I had to live with it! I told them at the time that was BS and they needed to be retrained. I got signed off for my trouble.

For the moment we seem to be heading in the right direction, after an urgent referral that took 7 months to get action. It has taken a gastrology specialist with interest to move forward. Yet it took my assertion of cure or kill as being my only resolve to be taken seriously. I think they are starting to recognise how desperate my resolve is, particularly with input from their dietitian confirming I'm not eating enough to sustain live. If I can't live comfortable I don't wish to live, none of them can refute that, it is a basic requirement.

My advice don't believe what you are told, research everything and be informed. Then do battle with the zealots in the health system we have to get what you know you need.

Supposedly I'm on kidney friendly medication, but with several blood test disproving the validity of the assertion through their own tests and procedures it is undeniable these friends I don't need if I wish to protect my kidneys. GFR 38 on meds, GFR 50 off meds and GFR40 after being forced back on meds with 15 mini strokes in 3 days, and declining.

Advocate for yourself is the only way forward in NZ for health.

Cheers

Andann profile image
Andann in reply to

Well yes, I dont follow the intracacies of your situation but I did have to tell the gastro team at North Shore Hospital 5 times that I was very sure my symptoms are IBS not gallbladder malfunction. They were terribly keen to remove the gallbladder but were at least making sure and they did carry out a 2 colonoscopies (to extract 2 polyps and to check one year later.) I had already had a gastroscopy privately which discovered fundic polyps. Neither that specialist or GP have suggested I need to do anything about them. I decided to go low fat myself which has helped quite a bit with gerd, stomach pains. I guess I wasnt seen as severe but its a long and winding road trying to find stuff out, no wonder we seek internet based resources.

in reply toAndann

You are aware IBS is just a label diagnosed when nothing else fits the problem.

I'm on a very restricted diet or no food when it is bad. Because of the diet the meds I have been on for diabetes type 2 and CKD it has taken 8 months to destroy what little function I had in the stomach. As a consequences of stopping my meds my stomach pain stopped and my kidney function shot up. So much for kidney friendly meds! Sadly none of the other symptoms stopped. You will know what I mean when I say I'm now ethnically challenged in the health system. I have insisted it is down on my hospital list much to their dismay, but definitely a reality. Waiting 4 years for an operation and almost there, touch wood.

Frasina profile image
Frasina

An ENT consultant a few years ago suggested intermittent use of PPI's is fine, but not long term use. He told me to try Gaviscon advance on a regular basis which I did and it helped a lot. I did address what I ate too; the point I am making is that PPI's are dished out to anyone who mentions reflux without being warned of possible long term consequences, yet there are other things to try that will not cause damage.

Jadiegirl profile image
Jadiegirl in reply toFrasina

Hi Frasina- my internist recommended Gaviscon to me many years ago for reflux and it really does help me a lot-I take it when I eat something that I know will bother me when I go to bed

Frasina profile image
Frasina in reply toJadiegirl

Yes it works well but there is the advance as well as the ordinary version and I always take the Advance one. Been on it about 4 years but now I only take it at night just before bed!

Andann profile image
Andann

Yes, also apparently it isnt good to take Gaviscon every day.

Orchard33 profile image
Orchard33 in reply toAndann

This is, I think, to do with the high level of sodium in liquid antacids.

Frasina profile image
Frasina in reply toOrchard33

Agree, which is why I only now take less than 5ml each night. Maybe doing more psychologically than anything else, but it does keep my reflux at bay...

Orchard33 profile image
Orchard33 in reply toFrasina

Very glad it keeps reflux at bay. That is so important. I had a return of acidity and this morning decided to take 10mg H2 Blocker. I'll see how long it is effective and take it from there.

TheOtherHalf profile image
TheOtherHalf

I am really sorry to hear you have had health problems as a result of your prescribed medication. Thank you for sharing this with us and potentially helping others to make informed choices about antacid medications.

jardinamour profile image
jardinamour

I have the same after taking Omeprazol for years. It was on about my sixth endoscopy they discovered them I'm still on Omeprazol but maybe. I'll try slippery elm. I

I came of Omeprazol before by taking a few grains out of each capsule at a time. Going 'cold turkey' is too painful. However, I went back on after a bad attack.

Orchard33 profile image
Orchard33 in reply tojardinamour

Try switching to an H2 Blocker. Gentler, more effective for me. Docs seem not to use them these days. You have to ask.

jardinamour profile image
jardinamour in reply toOrchard33

Thanks

tomdickharry profile image
tomdickharry in reply toOrchard33

I asked for Famotidine, just got told to take more esomeprazole. Tried opening capsules to reduce dose but had to go back to full dose on worsening symptoms.

Orchard33 profile image
Orchard33 in reply totomdickharry

Insist is my only suggestion.

tomdickharry profile image
tomdickharry in reply toOrchard33

Tried that, got refused, just like with pernicious anaemia.

Orchard33 profile image
Orchard33 in reply totomdickharry

That is shocking. Ask to see another doctor and demand to know why they're refusing an H2 Blocker.

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