GERD, acid reflux, heartburn and hiatus hernia

Sasha

Sasha

Senior Member (Voting Rights)
I hope it's OK that I'm posting about a non-ME/CFS problem but I've had worsening acid reflux and heartburn for a few months which is not better after four weeks of PPIs and Gaviscon, and I've just had a gastric endoscopy and been told I have a small sliding hiatus hernia.

My concern is that this is going to mean a lifetime of PPIs if I go the standard medical route, and they're already exhausting me. I'm concerned that having my stomach acid suppressed will mean long-term malabsorption of nutrients, on top of all the other things that PPIs are thought to put you at risk of (including dementia, possibly).

If I was already healthy this would be bad enough but I'm concerned that, coming on top of ME/CFS that already has me sofa-bound, the long-term consequences of these meds are going to be gradually devastating.

Googling has turned up some claims that various forms of physical therapy can help (specifically, certain yoga poses, various physical manoeuvres, breathwork to strengthen the diaphragm, etc.) but I'm sure that if I ask my GP about them, he'll know nothing and won't be able to refer me to anyone.

This stuff may or may not be rubbish, but given the alternative, I think it's worth a try.

Any suggestions for how to find someone non-quacky in these disciplines who would know about hiatus hernia? I'm in the UK and would need to deal with them via video link.
 
Thanks for asking, Sasha, I have the same problem and stopped PPI's when I came out in a rash that nothing else seemed to explain. I sleep on a slight slope, and spend most of the day in bed with a second sloping pillow, which helps a bit. Dietary changes are supposed to help but I haven't found what works for me.
 
Thanks, @Trish. Did you have trouble coming off PPIs? I'm concerned about rebound (I'm concerned about everything!).

Stupid question, but does sleeping on a half-bed-length wedge (as you mentioned in another thread) force you to sleep on your back?
 
Sasha said:
Thanks, @Trish. Did you have trouble coming off PPIs? I'm concerned about rebound (I'm concerned about everything!).
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I was only on them for a few weeks, and to be honest don't think they helped much anyway. It was a few years ago and I can't remember whether I had a rebound, or just returned to where I was before taking them.

Sasha said:
Stupid question, but does sleeping on a half-bed-length wedge (as you mentioned in another thread) force you to sleep on your back?
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Not a stupid question at all. I only use one wedge for sleeping and sleep on my side, but sometimes find it causes problems with hip and knee because of the angle. I think I slip down during the night so I'm not on much of a slope. I find it very difficult sleeping on my back. I am fine on my back when awake, so use two sloping cushions during the day.
 
Trish said:
Not a stupid question at all. I only use one wedge for sleeping and sleep on my side, but sometimes find it causes problems with hip and knee because of the angle. I think I slip down during the night so I'm not on much of a slope. I find it very difficult sleeping on my back. I am fine on my back when awake, so use two sloping cushions during the day.
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Thanks! I tried something similar some years ago and did the same, I think.
 
Sasha said:
This stuff may or may not be rubbish, but given the alternative, I think it's worth a try.

Any suggestions for how to find someone non-quacky in these disciplines who would know about hiatus hernia? I'm in the UK and would need to deal with them via video link.
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I am pretty sure that anyone who suggests these things is a quack. Posture makes some sort of sense, at least in limiting how far the reflux rises but any sort of exercise or yoga doesn't and I am pretty sure there is no evidence.

I would actively avoid anything like this on the principle that anything that has the power to do good must be considered to have at least that power to do harm. One of those sites talks of strengthening the diaphragm. I doubt it does anything of the sort but remember that contracting the diaphragm raises abdominal pressure, which can be expected to make reflux worse. And if there is a sliding hernia presumably the acid is being made above the diaphragm anyway! (I am a bit doubtful that a small sliding hh has much to do with reflux symptoms to be honest.)

I shouldn't give you medical advice but I wonder what your medical attendants recommend? I am not sure I would recommend long term PPI for reflux but I have not been in general medicine for a long time.
 
I've been dealing with acid reflux for some time and also came across these theories of physical therapy for the diaphragm. There's no scientific evidence.

I went and tried anyway, not at a physiotherapist but a logopedist. They also treat people with dysphagia. They were recommended to me by an ENT that I went to for LPR ("silent reflux").

It did not hlp me but felt good anyway. We did some breathing techniques and making certain sounds that make the diaphragm "jump" (for instance sharp, quick "f" sounds), some of that reminded me of warming up for singing in a choir as a child :-)

If you have the energy and means (mine was covered by insurance) I'd say it's worth trying, while it didnt help my reflux I felt like it helped to relax that area a bit where I always had pain.
 
I have been on PPI since my ME onset. Which is now 13 years. I have no signs of malabsorption, and i definitely prefer taking the pill every day than to risk GERD pain that is out of control and associated discomfort.

There are also risks of not treating GERD as noted in this article.
 
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Milo said:
I have been on PPI since my ME onset. Which is now 13 years. I have no signs of malabsorption, and i definitely prefer taking the pill every day than to risk GERD pain that is out of control and associated discomfort.

There are also risks of not treating GERD as noted in this article.
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Thanks, Milo. I agree that there are risks of not treating GERD, and I'm in such pain with the heartburn if not taking anything that not treating isn't an option. But if I can fix the problem with physical therapy, I'd much rather!
 
Jonathan Edwards said:
I am pretty sure that anyone who suggests these things is a quack. Posture makes some sort of sense, at least in limiting how far the reflux rises but any sort of exercise or yoga doesn't
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Thanks for replying! Really helpful to have somebody who knows about physiology.

There seem to be two basic things being suggested. One is to simply put your stomach back in place (repeatedly if necessary) through massage or drinking a whole load of water and dropping hard on your heels. The latter sounds a bit dangerous, and I'm not sure about the former, but don't they make sense instead of mechanism?

The other is to strengthen the diaphragm. I've read that one possible cause of sliding hiatus hernia is the weakening of the diaphragm muscle with age (I am old enough for that to have happened!). So if you can strengthen the muscle, wouldn't that help? Is your doubt over whether you can really target that muscle with exercise?

and I am pretty sure there is no evidence.
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I did a bit of a sketchy search on pubmed and haven't found any trials, but as with all these things where there isn't a patented drug where companies can make money, I'm (sadly) not surprised. As you often say, people should do trials. But that leaves us in the position where absence of evidence isn't evidence of absence and there's just a vacuum of information on which to base a judgement.

I did find some evidence, which is positive but not of good quality, on a device called IQoro, which claims to strengthen the diaphragm, and NICE seems to have taken it seriously enough to produce a report on it. I'm wondering if NICE's interest suggests that the basic concept of diaphragm-strengthening makes sense, though.

I am a bit doubtful that a small sliding hh has much to do with reflux symptoms to be honest.
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That's interesting. I've been reading that HH is very common in over-50s, that a lot of people with a small sliding HH don't have reflux, and a lot of people with reflux don't have HH, so I'm wondering how it gets determined whether one's small sliding HH is the culprit.

I shouldn't give you medical advice but I wonder what your medical attendants recommend? I am not sure I would recommend long term PPI for reflux but I have not been in general medicine for a long time.
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When the guy who did the endoscopy told me I had an HH, I asked him if that meant I was going to be on PPIs forever and I think (still traumatised at the time!) he said yes, but that I should discuss that with my GP. I haven't been able to speak to my GP yet but want to mug up on all these alternatives so that I can inform myself about them as best I can before we talk.
 
Sasha said:
put your stomach back in place (repeatedly if necessary) through massage
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That is make believe.

Sasha said:
drinking a whole load of water and dropping hard on your heels.
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And I don't think that would do anything because your stomach is no denser than the rest of your abdominal contents. The physics does not add up.

The physics of how the stomach holds fluid below the diaphragm is very counterintuitive. My father as for many years the leading expert on the topic. The idea that somehow contracting the diaphragm holds things down is nonsense.

Sasha said:
I've read that one possible cause of sliding hiatus hernia is the weakening of the diaphragm muscle with age
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That is just ignorant people bullshitting I think. Doctors and therapists love pretending to themselves that they understand things without even bothering to look for evidence - as we all know.

If you think about it: the diaphragm has a hole in it for the oesophagus. If the muscle tenses the solid part of the diaphragm shrinks - so the hole is if anything pulled open. When you vomit you contract your diaphragm as ell as your abdominal muscles.

Nobody quite understands how the stomach allows its contents to flow upwards freely during vomiting when no matter how hard you try to contract your abdominals and diaphragm on purpose nothing comes up. It seems to have to do with a 'raspberry valve' mechanism that would take a while to explain.

The other thing is that if you have a sliding HH the problem is not fluid coming up from the stomach - which is still below the diaphragm. It is that part of the stomach, producing acid, is sitting above the diaphragm.

Sasha said:
I'm wondering how it gets determined whether one's small sliding HH is the culprit.
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Precisely, no idea.

Sasha said:
When the guy who did the endoscopy told me I had an HH, I asked him if that meant I was going to be on PPIs forever and I think (still traumatised at the time!) he said yes, but that I should discuss that with my GP. I haven't been able to speak to my GP yet but want to mug up on all these alternatives so that I can inform myself about them as best I can before we talk.
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Maybe the guy should have explained the evidence and given a clear answer. The GP will not know the evidence. I guess there may be NICE guidelines on this - but whether they are well grounded or not is another matter.
 
There is indeed a NICE guideline.

One obvious point is that the recommendation for offering PPIs is primarily short term - and if long term at lowest dose possible.

https://www.nice.org.uk/guidance/cg...iew-of-2019-surveillance-methods?tab=evidence

Gives information about long term safety etc.


One thing that strikes me from reading this guideline, which I guess is likely to be true of most, is that the advice 'offer treatment X' is a totally inadequate recommendation if the policy is to allow patients to make their own decisions. In this sort of situation surely the recommendation should be to explain to the patient the risks and advantages of X, specified as follows... and then see if they are interested in taking X.

So much for 'shared decision making'. How can it be shared if neither the patient nor the doctor know why they are deciding?
 
Thanks, @Jonathan Edwards - that's all incredibly helpful and will save me going down a lot of unhelpful avenues.

Jonathan Edwards said:
If you think about it: the diaphragm has a hole in it for the oesophagus. If the muscle tenses the solid part of the diaphragm shrinks - so the hole is if anything pulled open.
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Good point! I'm surprised this hasn't come up anywhere.
 
Jonathan Edwards said:
There is indeed a NICE guideline.

One obvious point is that the recommendation for offering PPIs is primarily short term - and if long term at lowest dose possible.

https://www.nice.org.uk/guidance/cg...iew-of-2019-surveillance-methods?tab=evidence

Gives information about long term safety etc.
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Thanks, Jo - that's very helpful, I'll read that before I talk to my GP.

In my position, would you want to stick with a GP or get with a specialist? If so, any idea what sort of specialist (I can't afford to let this drag on and might end up having to try to find one of my own)?
 
I have tried a wedge pillow/cushion in the past and hated it. I somehow ended up bent in the middle and it very quickly became, firstly, uncomfortable, and then excruciating.

I have acid reflux and severe heartburn and raising the head of my bed worked much better for me than a wedge, and it allows me to continue lying flat in bed. I use two large breeze blocks under each leg of the head of my bed. But I still take a PPI unfortunately. I got an ulcer in my 20s and have had "delicate" gut health ever since. I used to use Ranitidine (which I preferred to PPIs) but then it got withdrawn from prescription and sale. :(

Edit : spelling
 
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I have acid problems, mainly due to intollerances. PPIs made my problems worse but maybe can work for you. The idea my gastro said was to take them for 2/3 months until the inflammation is down and tissue healed then come off them slowly. But I never got far with them.

I still get some problems, but far less since cutting out fruit, but I found my best tool to handle the acid pain is milk which I put in a flask by my bed every night to help at night time because that is when I will get acid pain about once a week still. Maybe worth trying if you are okay with milk?
 
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