Silent reflux causing ongoing problems.

[MoyB]

Good moening all. I'm not a regular poster but am hoping someone will relate to my situation and perhaps offer some helpful suggestions.

I was diagnosed with a hiatus hernia nearly 30 yrs ago. I was put onto Omeprazole first, which didn't suit me, then changed to Lansoprazole which I've taken ever since.

I have bronchiectasis which my resp consultant believes (as I do) was caused by silent reflux. He has referred to my hernia as 'incarcerated' and 'large'. The gastroenterologist I saw said that it is 2.5 cm and so is 'small'.

18m ago I was referred to ENT as I kept losing my voice. Reflux damage was discovered and I was told to take Gaviscon Advance after meals and before bed.

This plays havoc with the timing of my other numerou meds as some can't be taken together, others can't be taken with food, others can't be taken within 2hrs of taking the Gaviscon.

My GP has tried to help with this but I am finding it impossible to take the gaviscon as prescribed. I usually only manage twice a day.

I have done all the other stuff - raised the head of the bed, no food or drink after 9.00pm, limited spicy or fatty foods etc.

Following another lost voice episode I have been referred to a gastroenterologist again.

This issue has been ruling my life for nearly 30 years and I'm now severely p'd off with it.

I currently take 30mg Lansoprazole twice a day and famotidine before bed. The GP said I'm on the highest dose of meds that she can prescribe.

Has anyone else had an op for such a small hernia? If so, was it successful? Which op did you have?

Is there anything I can be asking the gastroenterologist for?

Any advice will be gratefully received.

Xx Moy

[Jumpey]

I can't help re. the surgery. But I had severe Gerd which caused interstitial lung disease. I read Dr. Louise Kaufman's Acid Reflux Diet and changed my diet to an alkaline one and this helped over months. I no longer ger needed surgery.Good luck.

[MoyB in reply to Jumpey]

Thank you. I'll check it out. Xx Moy

[ParkSchool5]

Hi, sorry to hear about your problems, mine are similar and I know how depressing and overwhelming it can become. I too was diagnosed with a 2cm sliding Hiatus hernia about 8 years ago and have been on Omeprazole, Famotidine and Gaviscon before bed. I know it is tricky for timing of meds with meals etc. 2 hours is a long time between meds, I sometimes reduce it to 1.5 hours if I can't always manage timings. I sleep propped up as nightime acid is worse for me, when it burns up right into my throat despite meds. I do find that often Famotidine seems to make symptoms worse for me so I take them intermittently. It's so annoying that they class a 2cm HH as small but it's surprising how much it can affect your lifestyle quality. Hope you manage to get sorted out soon.

[MoyB in reply to ParkSchool5]

Yes, I agree that it can really impact on your lifestyle. I feel I'm being ruled by tablet times at the moment and am not managing to fit the Gaviscon in more than twice a day. A long time ago, I asked my GP if I could be referred to have it operated on and he said absolutely not! There was just no question of even discussing with a gastro consultant.

However, I've had several endoscopy procedures and each one has shown oesophagitis, gastritis and duodenitis. At one time my oesophagus was ulcerated and they thought I might have Barrett's Oesophagus. Thankfully, I don't have that. But it seems to me that if this is a recurring issue, something more 'mechanical' might be a possible solution, rather than keep taking pills.

At least I'm now in the queue for a gastro appt. although I expect it will be a long wait. I've also been referred to ENT again about the problems with my voice. I thing that waiting list is about 2 yrs!

I hope yours settles down a bit. Maybe some of the replies on here will help you too.

xx Moy

[ParkSchool5 in reply to MoyB]

Hi, thanks for your message. It's good news that you haven't got Barrett's. I have had endoscopies in 2015, 2017 and 2019 and each time it showed my Gastritis was more severe despite being on PPI's all that time, which is odd. My symptoms have been much worse since a week after my last endoscopy, which I wonder if that could have damaged something, due to having biopsies taken (I had 15 benign polyps at that time) which I know can be a side effect of the PPI's, goodness knows how many I have now! After that experience I am too scared to have another endoscopy although it is overdue. I went privately to see an ENT consultant about the burning acid in my throat and they saw some inflammation. She looked me up and down and said 'how old are you?, 60, you should be alright to have the Fundoplication procedure'. The 'should be' was scary enough for me. I have read varying reports on people's experiences of the op. With some people it seems to make things much worse, so unfortunately I am stuck on the meds long term, which is not ideal. I tried Iqoro but it did not work for me and seemed to make the pain worse unfortunately. Hope you manage to get sorted soon. Best wishes.

[MoyB in reply to ParkSchool5]

Thank you. I'm sorry to hear you're suffering, but your reply is really helpful to me as I want to try and find out as much as I can before I (eventually) see a gastro consultant, and also, if I can help myself, I' will do so.

I saw ENT consult 18months ago and he said my vocal chords were ok but there were signs of reflux damage to the rest of my throat/oesophagus (whichever bit is nearest the larynx) and it was he who prescribed Gaviscon Advance 4 times a day.

Our 'endoscopy suite' team doesn't fill me with confidence. Once I was told NOT to stop Clopidogrel (which thins your blood). I knew this was incorrect and phoned to check THREE times. When I arrived for my appointment I was told by the booking in nurse that I SHOULD have stopped it. I told her that I had checked and she looked through my notes and agreed that I had been told not to stop it. Once on the bed, I was berated by the doctor doing the endoscopy for not stopping the Clopidogrel and afterwards, I was told I would have to have it done again as a result, because they had found polyps and were unable to remove them.

Next, I received a letter telling me to stop Lansoprazole for two weeks before the procedure. This caused severe ulceration of my oesophagus which they thought might be due to Barretts. I had to have another procedure a few weeks later.

I was told not to stop the Lansoprazole. Then I received a letter telling me to stop it two days before the procedure. 7 days before I was due to go in for it, I had a phone call and I was told to stop the Lansoprazole for 14 days before the procedure!! I said, 'Well, that's not going to happen, is it?' The person on the other end got stroppy and said I MUST stop the Lansoprazole for 14 days. So I reminded her that I was having it done in 7 days time. It still took her a moment before the penny dropped. She then said I needn't bother to stop it at all as if I didn't stop it for 14 days there was no point!

After this one, I was told there was no sign of Barretts but I had a Corkscrew Oesophagus. I asked what it meant and was told, 'Oh, the surface of your Oesophagus isn't flat and it makes it a bit more awkward for us to do the procedure.'

I Googled Corkscrew Oesophagus and the worst case scenario is you can end up with a feeding tube! Not quite the same answer I had been given. So I got onto the gastro consult again and he ordered a Barium swallow. He said that there was NO indication of a Corkscrew Oesophagus!!

So you can see why I'm keen to gen up on everything before I see someone again, and replies from you and others on here are so helpful in pointing me towards things I may not have heard of before.

I hope you are able to get something sorted out so you are better able to manage the reflux. People who don't have it can't begin to imagine how much it can affect you.

Thanks again,

xx Moy

[Badger2024 in reply to MoyB]

How frustrating for you. Good that you’re taking note of all this by keeping a diary. I wonder if the reason someone wanted you to stop your PPI for 14 days before your gastroscopy was because they wanted to test you for Helicobacter Pylori infection which can cause gastric ulcers and is easily treated with a course of antibiotics? It is essential to go off PPIs for at least 14 days before the test. If you haven’t had this done before then it would be a good idea to get it done at the next gastroscopy

[MoyB in reply to Badger2024]

Yes, that was the reason, but I was told that as I had only been actually TOLD to stop taking then 7 days before, to just carry on as there was then no point. Originally, I stopped for 48 hrs as requested and as a result my oesophagus became so ulcerated that I had to have the second endoscopy to check for Barrett's Oesophagus and it was the second one that they told me first of all in a letter, to stop for two days, followed by a phone call 7 days before the procedure telling me to stop for 14 days. The person telling me that was amazed when I said I couldn't do it! She also sounded a little annoyed. I drew her attention to the date of my procedure and she then accepted that it was, indeed, impossible for me to stop for 14 days prior to a procedure that was booked for one week later. Lol!

I have had quite a few endoscopies and been checked for HP most times. It's never been found so far, but I understand why you're highlighting it as a possibility and the reason for stopping the meds.

xx Moy

[Badger2024 in reply to MoyB]

Sounds like your problems aren’t from HP. Going off PPIs for 14 days can do so much damage. Just refuse them to test for it again

[MoyB in reply to Badger2024]

I hope I don't need another endoscopy for a long time, but if I do, I will make it clear that coming off the lansoprazole causes me big problems.

Unfortunately, our 'Endoscopy Suite' appears to run independently from the rest of the hospital. They also fail to communicate properly within the department!

I have had cause to complain several times about procedures having to be repeated due to being given the wrong info about whether or not to continue with blood thinners. Hence, I now check everything I receive from them two or three times by phone and write down the response.

One doctor in charge of my colonoscopy procedure got really cross with me because I had not stopped taking Clopidogrel. I told him I had checked three times as I didn't think it was correct and even checked when admitted for the procedure. The nurse admitting me checked my notes and saw that it was written in black and white that I should NOT stop taking the Clopidogrel. As a result of this mistake, I had to have the procedure repeated so that small polyps could be removed; they could have been done there and then if I'd been given the correct info.

I'll be honest, the procedures don't bother me but the mis-communication scares me to death!

xx Moy

[Bronchiectasislady69 in reply to MoyB]

Hi MoyB again. I am still suffering with exactly the same as you and I have left you a personal message again in chats.

Mona xx

[Washington1]

I'm sorry to hear about what you are going through. I have severe gerd and haven't experienced the same as you, but I have read up a little about the iqoro. Have you tried it all?

[Pinkcatfairy in reply to Washington1]

I am currently using the IQoro myself, I was told I had a small hernia some time ago ,it hasn't caused me many problems but the odd flare up over the years,currently suffering silent reflux affecting the throat , I was on Lanzerpole for eight weeks which helped a bit but still had symptoms,then I came off them and had gaviscon because they wanted to test for h pylori, now currently not on anything and things seem to have improved, not sure if the IQoro has helped but it does seem better ,I feel like at least using it I have a back up and the science behind it makes sense that it will in the long term help

[MoyB in reply to Pinkcatfairy]

Thanks for that helpful reply. I haven't tried the IQoro. Is it available on prescription or only privately?

xx Moy

[Pinkcatfairy in reply to MoyB]

I'm not sure if you can get it on prescription,I did buy it privately,it was expensive for what it looks like but I was willing to try anything and it seems to have good reviews,it would be worth finding out if you can get it on rescription or not though . I'm sure that I don't snore as much ,so something must be working!

[MoyB in reply to Pinkcatfairy]

I'll research it a bit and see how it might work with all the other meds I take ie if there would be any interactions. If not, I'll speak to my GP about it, unless I suddenly get a gastro appt through, in which case I'll speak to them. Thanks for the info. xx Moy

[Washington1]

That's really helpful to know. Thank you.

[wholesome]

Get some spray magnesium, and spray the area of your hernia, it will loosen it up. Secondly there's some great chiropractors on line with simple exercises to do to help the hernia problem.

Next for the throat, get some white vinegar and dilute it with water and gargle with it a few times a day, especially before bed.

Look up low acid symptoms, most acid reflux is from low acid. Start juicing with cabbage and celery juice to get your stomach issues back.

[MoyB in reply to wholesome]

Thanks for your reply. I'll check out the on-line chiropractor exercises but am not sure about it being from low acid as I have actually felt it squirt up into the back of my throat and it is definitely acid. I will look it up, though, as I'm open to any suggestions and won't rule anything out until I've researched it.

After one endoscopy, I was diagnosed with a 'Corkscrew Oesophagus' but a follow up endoscopy showed that I don't have it!

xx Moy

[Digger0]

Can't help with the surgery question, but I have found that Gaviscon does not touch my reflux - so use Peptac if needed. I am Omeprazole

[Columbo70]

i think i was in a very similar catch 22 situation to you. Was having LPR and GERD symptoms. Lost my voice and couldn’t speak for several weeks. Non smoker, rarely drank alcohol and not overweight. In total agony and distress and normal life totally on hold and seemingly getting further away each day. I was already on Pantoprazole for several years due to prior myocardial infarction(s). My PPI dosage was increased and at one point also prescribed Antepsin. Was taking Gaviscon Advance 4 times per day, drinking alkaline water, etc. Collectively, in my case, I didn’t feel i was getting any improvement in my constellation of evolving symptoms. So I stopped taking the PPIs, the Antepsin and the Gaviscon Advance. And doubled down on a more restricted diet and the IQORO neuromuscular training device. Don’t feel as sick as i was and the raging volcano in my throat and esophageus has died down a little bit. I am putting a lot of my faith in the IQORO device as most of the medication approaches are treating symptoms versus solving root cause. I used to snore a lot and apparently my snoring has stopped - I take thst as an indication thst the IQORO is having an effect somewhere. I looked at the surgical routes (Fundoplication or Linx procedure) and very uneasy about the risk/rewards of both. I still have globus sensation, voice and throat clearing issues and now, probably some depression and anxiety at the way my life has turned in the last 4 months when I was recovering really well from a 2nd myocardial infarction.

[Pinkcatfairy in reply to Columbo70]

I took an using the IQoro and noticed my snoring has stopped,a sign hopefully that it is working

[MoyB]

Very interesting and good news that you have found something that seems to be giving you some improvement. How does the IQORO work, please?

Did you stop the meds with medical supervision?

I'm frightened to stop the Lansoprazole as when I was told to stop it for two weeks prior to an endoscopy, my oesophagus became badly ulcerated and I was agony.

I do watch what I eat but there are times when I eat stuff that I know would be better left in the cupboard/fridge! I don't usually notice an immediate effect, as long as I follow with the Gaviscon.

It's difficult to get everything right, isn't it? But it sounds as though you are on the right road.

Hope you fully recover from the myocardial infarction.

Xx Moy

[Cyanking]

I'm sorry to hear that you are struggling with this as well as iam.I'm surprised the doctor hasn't requested you have surgery to tighten the valve, I would ask your doctor this

[MoyB in reply to Cyanking]

Hi! I'm now being investigated for an unrelated gastro intestinal tumour and have an endoscopic ultrasound soon so perhaps the gastroenterologist dealing with that may suggest something, although his focus will be on the tumour and not on the reflux issue I expect.

TBH, I've had stomach issues all my life, even as a child, but no one has really taken it seriously until now. The GIST was spotted on a CT scan which was done when I tripped and fell out of my front door, fracturing my sternum. They also discovered a suspicious lung nodule that has given cause for concern so there's a lot going on at the moment. I'll be glad to get the procedure done so that they have a clear picture of what is going on in my stomach. I'm always concerned as my paternal grandmother died of 'stomach cancer' over 70 years ago when it was not given a specific name and my father had a colostomy following treatment for colon cancer 40 years ago. I have yet to find out if there may be any genetic link.

I'm sorry to hear that you're suffering too. The reflux is the pits, isn't it? Have you had the op to tighten the valve?

xx Moy

[Cyanking]

Oh god! So sorry to hear about your tumour and sternum was you having heartburn? They need to investigate first and then go from there!

[MoyB in reply to Cyanking]

I would have heartburn if I didn't take lansoprazole, famotidine and gaviscon. I used to get it really badly. I've had duodenitis, gastritis, oesophagitis and an ulcerated oesophagus when they made me stop lansoprazole for two days! It was awful. Xx Moy