Reflux advice please: Hello everyone, I... - Scleroderma & Ray...

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Reflux advice please

Duck33 profile image
16 Replies

Hello everyone, I’m having a bad reflux flare up again and wondered how everyone else manages this problem. Last year I was put on a ppi but as most of my symptoms are at the top end of my oesophagus, so I get a horrible acid taste in my mouth, croaky voice, throat problems etc, the ppi didn’t seem to help much. I came off the pills for an endoscopy and they found I had a hernia, too. Afterwards I didn’t go back on the ppi. I went on a really strict low-acid diet plus Gavisvon Advance and a few months later the reflux settled down. Now it’s flared up badly again. I’ve had a bit of stress lately. My lovely dad died last week. I think stress makes it much worse. Anyway, I’m just wondering how everyone else deals with this... Do you stay on the ppis all the time, or take breaks from them? Any advice on managing this would be so helpful, thanks. I have CREST. My rheumatologist doesn’t have a lot of experience of scleroderma patients. She suggests continual ppis. Thanks for your help.

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16 Replies
honeybug profile image
honeybug

Hi Duck33 😊🌿🌸🦋. First let me say I’m sooooo very sorry for the loss of your beloved dad. My heart aches for you. This stress will definitely increase your acid production and reflux.

In 1982 I had the testing and discovered I had a large hiatal hernia and have had constant stress all of my life mostly due to extremely dysfunctional family.

Keeping your low acid diet is important. No Coke and the like products or carbonated drinks too.

Here is what I did for years.

Placed the head of my bed on blocks 6 inches high.

Don’t wear tight fitting clothing around your torso.

Wait 3 hours before laying down after eating or meds

Try to avoid meds that will cause or aggravate acid increase.

Try to reduce the stress in your life (which is nearly impossible currently and with some families)

When laying down lay on your left side ( unless you have your internal organs in the reverse order which would mean laying on your right side) this keeps your stomach opening at the top making it harder for contents to leak back through the sphincter muscle into the esophagus.

You can use Gaviscon to help...I sure did.

Using good probiotics with at least 3 different sources of good bacteria daily which is needed to help maintain a good balance of gut bacteria.

You can try using diffusers with essential oil of lavender to fill the air with this scent which has a calming affect. Mind you if you are super sensitive to odors this may not be wise as it could have a negative effect. I went through years where almost every odor made me sick...couldn’t even handle money. That was a very challenging time. I have gotten better now decades later.

If you happen to feel your tummy acting up you can eat a few unsalted soda crackers to try and settle acid increases.

Oh yes, getting enough good sleep helps too.

I still have bad bouts of reflux when even drinking plain water sets this off.

Something a lot of reflux sufferers may not know is that reflux can also cause sinus/post nasal drip or flooding down the throat that can also increase reflux...a catch 22 cycle.

I hope some of these tips will be helpful my friend.

Please take care be safe and my prayers are with you daily.

EvaJo aka EJ

😊🤗💗😘🙏🕊🌿🌸🦋

Duck33 profile image
Duck33 in reply to honeybug

Thank you so much for your lovely reply, and for your kind thoughts about my dad. I really appreciate it. Your advice is really good, thanks. I'll keep going with the low acid diet and try some of the other things you mention, too. The post-nasal drip thing is very interesting. I hadn't thought about the connection there, but it definitely makes sense, thanks. I'll also give the probiotics a try. Thank you again for your kindness. Really lovely of you to help.

honeybug profile image
honeybug in reply to Duck33

You’re most welcome. I wish you the best in sorting it out. It’s terrible to be ill and have to figure out things on your own.

I’m always willing to help others if I can.

I pray you’ll get relief soon.

EJ 😊🌿🌸🦋🙏

Duck33 profile image
Duck33 in reply to honeybug

Aw, thanks so much for your kindness.

honeybug profile image
honeybug in reply to Duck33

🥰

Poppy221 profile image
Poppy221

I also have a hiatus hernia. I have even more of an elevated top when sleeping - double duvet piled up to make a slope. I am on continuous PPI at maximum dose (esomeprazole twice 40mg per day). Not taken a break from it, was on 20mg twice a day for a year with reduced problems, it was increased to 30mg then 40mg over the last couple of months and that definitely reduced soreness in the back of my throat (which was already mild compared to pre-treatment). Gaviscon at night didn't do me a lot of good - I have read that the plug on alganate floats on the top of your stomach contents and if you are not upright, it is not blocking your gullet. I haven't taken gaviscon in years. (You do need to read the brochure about side effects on antacids - like excess of calcium for example.)

Using fake saliva gel from Oralieve (there are other brands) also helps me as having a trickle of saliva down my throat helps wash away acid. Chewing unflavoured gum helped at one point before the gel - helped generate saliva. Peppermint or spearmint gum inflamed my throat.

When it was very bad I couldn't eat acid things like oranges - fine with them at the moment. Beer or wine was very bad - I rarely drank anyway - a glass maybe once a month, but a few years back drank a beer on my birthday and it felt like my stomach was on fire.

I didn't get on with the first PPI I was put on, took a break as it made me feel awful, I was then offered the choice of whichever PPI I'd like to try, and went for esomeprazole mainly on the grounds that you can take it before or after food and so it is more flexible for me. So if you are struggling with one PPI, you could ask to try a different one.

Sorry to hear about your father, that will definitely not help.

For stress, I'd suggest meditation. I'm not a new age person, but I do find a few things helpful. It has been shown scientifically that meditation for 10 minutes a day can take the edge off - and I've found that it does. I don't do 10 minutes every day, but if I haven't done it for a few days I notice that I get wound up faster by things. I can't always meditate just sitting there with my eyes shut, so I have two other things I do - one is find a tropical beach film on YouTube and just sit and stare at the waves and the shush as they land on the sand and concentrate on that. Set a timer for ten minutes so I don't check on the clock. The other one is a video of forest scenes with bird calls and soothing music. Again I set a timer. It really does help to chill out for ten minutes and try to stop running problems through your mind.

Duck33 profile image
Duck33 in reply to Poppy221

Thanks so much for all the great advice. Really useful. I hadn't thought abut trying a different PPI. I'm seeing my GP this week, so I might ask her about that. And also the mouth gel. I'd ordered some for dry mouth, and it has now arrived so I'll definitely keep going with that. I've never been very successful with meditation, but I think maybe it's time to try again. Stress definitely seems to make things worse on the reflux front. Thanks for that idea. I like your way of doing it with a visual thing to concentrate on. I'm also trying to stick to a low acid diet, and drinking ginger tea and camomile tea, and eating very small meals. Hopefully the reflux might settle down again a bit, after dad's funeral. Thanks again for messaging. I'm so grateful.

Poppy221 profile image
Poppy221 in reply to Duck33

Glad to be of help. Ginger is actually one of the things that upsets my stomach. I've never tried ginger tea (which I know is supposed to be soothing) but I used to be able to chomp on crystallised ginger and when my stomach was bad I couldn't. Not tried it in a while, but the other month I ate a rather nice cookie (from Co-Op - they do an excellent range of all butter cookies in a packet) which had chunks of crystallised ginger and plain chocolate in it and I suddenly had gas and stomach pains which faded by the morning. It wasn't the plain chocolate - I tested that. I also avoid strong spices like chilli. I can eat mildly spicy food these days but would never go near anything listed as even medium spicy.

Duck33 profile image
Duck33 in reply to Poppy221

That's so interesting about the ginger. I'll keep an eye on that, thanks. It's really heartening to know you can eat mildly spicy things and chocolate. Thanks again for your message. Much appreciated.

Gmargs profile image
Gmargs

All good advice given from others and understand what you are going through. I think Poppy221 advice on trying different PPI’s was a good one, as it is true some don’t agree with everyone. It is a matter of trial and error (so it could take some time to work out, if you are willing to try). Some people find Esomeprazole (like with Poppy221) works for them, where I find Omeprazole works for me. But then there is the “additives” to form the tablet which can also react with you. For example, I can take one brand of Omeprazole (Acimax or Losec) but was once given another generic brand (as the Chemist had run out of my usual brand) and it made my heartburn worse (on the first day of starting it!).Then there’s the dosage - some people find 20mg daily works, others 40mg etc., others may use 20mg daily and increase it for a day or so (short term) if they know they may need it with an upcoming ‘event’. Something to work out with your “understanding and patient” GP or Specialist.

I have been taking 20mg of Omeprazole daily for many, many years now (as nothing else helped me and on medical advice), and it has controlled my heartburn/reflux. Yes, it can have some “side effects” on the body if taken long term, which I have found, such as reduced absorption of some nutrients (which can be monitored by having a blood test say every 6 months or so to check things like, B12, iron, Folic Acid, Vitamin D etc., maybe along with any other regular blood tests that you most likely would have).

Two more things to take note, one is to take your PPI at approximately the same time everyday (as this too helps, as I found out). Two is that some other medications also cause reflux either on their own or when taken with PPI’s, so a lot to consider.

I can only suggest/advise according to my experiences, so hope it helps with your treatment plan. Be persistent with asking your doctor/s for options and if they are unsure ask to be referred to someone who can advise.

Take care

Duck33 profile image
Duck33 in reply to Gmargs

Thanks so much for taking the time to reply. I really appreciate it. It's very interesting to hear your experiences of PPIs, and trying out different kinds. I hadn't really thought about how even the different brands could have a different impact. Also, it's good to hear that it's okay to take them long-term, with monitoring, as I think I'm probably going to have to do that, too. It's reassuring to know they are working for you. Taking them at the same time sounds like really good advice, too, thanks. Evenings and night time seem to be the worst for me, so that makes total sense.

Thanks again for messaging. I'm so grateful. Take care.

Scooterboy63 profile image
Scooterboy63

I can only back up the great PPI advice given so far, I’ve taken them long term, 20mg of Omeprazole daily, 1 tablet first thing in the morning. I did try a break from them resulting in a quick return of bad Reflux. My rheumatologist see’s them as essential. As mentioned by Gmargs, because of the long term use she does a blood test occasionally to check things like, B12, iron etc. I still treat the trigger foods/drink with respect!Take care

Duck33 profile image
Duck33 in reply to Scooterboy63

Thanks for messaging. It's so reassuring to hear about people getting relief from PPIs and taking them long-term. That's really been worrying me, so it's reassuring to know how it works for you, thanks. Just checking, do you still have to avoid all the usual suspects - caffeine, chocolate, tomato sauces etc? Thanks again for messaging. Take care.

Scooterboy63 profile image
Scooterboy63 in reply to Duck33

Not so much avoid, a little now & then is ok. These days a nice mild curry instead of a Vindaloo!

Take care

Duck33 profile image
Duck33 in reply to Scooterboy63

Great to know you can have a mild curry. It’s really encouraging that I might be able to do the same sometime. Thanks again for the advice. Take care.

Sanmateogirl107 profile image
Sanmateogirl107

OMEPRAZOL

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