I'm still on a mission to try to find something that helps with reflux.
Currently in the middle of another bad flare-up. No idea what's triggered this one as I have a very restricted low-acid diet. No alcohol/caffeine/chocolate/spicy anything for years. Eat tiny meals. No food after 6pm. Nothing before 8am. Use the Acid Watcher diet as a template. Gaviscon Advance when needed etc. Usually all that sort of keeps it dampened down. Or at least livable.
I've also been using IQORO for a while which did seem to be helping. I've also been using xylimelts for the last 18 months which have been life savers. Definitely think the dry mouth courtesy of Sclero and Sjogren's makes the whole thing worse, as we don't have the saliva to wash stuff down and neutralise the acid.
I've been on PPIs before. But they always make me feel rubbish, so still trying to find a different solution. Anyone tried Gut Doctor pills from Boots?
Thanks so much to you all.
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Duck33
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hi there. My (mostly silent) reflux has been kicking off a lot too - particularly since my bowel / stoma surgery in end of June. I take Esomeprazole, 40mg in mornings and 20mg at night and also Famotidine 40mg each morning and a Domperidone. I have gastroparesis and stoma for slow transit so have to be extremely careful about my food intake. I also have my bed head raised on stilts I bought online. None of it is perfect but it definitely helps - although I suck sugar free sweets in day and also xylimelts overnight for Sjogren’s dry mouth. The only thing you’ve described that I struggle with is the stopping eating after 6 and nothing until 8am next morning.
I feel that, during the final 4 hours prior to bed, I’m still a bit active. So I have a hot drink, mostly a decaf coffee/ cocoa substitute at around 7.30-8pm. I can’t drink cows milk so I add a bit of my Ensure Plus as a milk substitute and nibble a tiny bit of rice cake scraped with peanut butter and marmite - just so I don’t get the gnawing rat sensation when I wake in early hours. None of this works 100% or even 70% - but drinking a hot drink with something very light to nibble a few hours or so before you go to sleep might be worth trying?
Oh, thanks so much. The snack thing is definitely something I can think about, thanks. Really miss a warm drink last thing. It's all so frustrating, isn't it. Before we're hit by these conditions, we take for granted being able to eat well. And then suddenly it's all change! Not to worry.
So sorry to hear how challenging your conditions are. You're always so generous with your support for others. Really grateful. Hope you're keeping well, yourself, and that your flare-up of reflux settles soon. Take care.
Ensure is mainly soya based I think. I’m fine with tiny amounts but can’t manage large quantities. Also, not to put too fine a point on it, dairy makes the output other end more smelly - which is not so good with a stoma! Some struggle more with soya based but I’m fine with it. I’ve actually gained some weight recently and only parts of me that’s struggling more are my mouth/ teeth and throat - which seems to be reflux -although I’m not aware of it. I was diagnosed with silent reflux a few years ago by an ENT during a scope. I think it’s more common with Sjogren’s.
Strangely I've never been offered Famotidine. Always a ppi instead of H2 blocker. No idea why. A friend used Ranitidine/Zantac until it was withdrawn, and said it was amazing. If I can't conquer this flare-up, I'll ask doctors about Famotidine. Good to hear it works for you, thanks. That's hopeful.
Hi, I’m not sure I can add anything to this as I’ve failed miserably in giving up a ppi. I’ve been on one for 20 years and I’m afraid I do have osteoporosis. It’s hard to pin point the cause as I’ve lost a lot of weight as I’ve struggled to control SIBO which doesn’t help I’m sure. I did give it up some years ago but got scarring in my oesophagus. I’ve got a Hiatus Hernia, slow transit, and dysmotility in my oesophagus and reflux of course. Initially I was constantly choking without a ppi. In the last two years I’ve had to take esomeprazole instead of omeprazole due to oesophageal spasms. I too have a raised bed head.
I think you are doing very well although it might be worth having an endoscopy just in case you are getting acid scarring. Really interesting about the IQORO as I’ve been considering one of those. The dry mouth is interesting too as I’ve been getting this a lot recently and didn’t realise it could be related. My reflux definitely is worse when I have a bacteria build up of Sibo. I wonder if you find you have to take a ppi a different one might help? It’s such a balance really with this illness and sadly nothing is perfect. Hope you find something here helps from the others so you don’t have to resort to a ppi.
Hello there, thanks for replying. And so sorry to hear about your osteoporosis. My mum has had it for years which is one of the reasons I was worried about PPIs, as I know it's sometimes hereditary, too. And yeah, the SIBO thing is interesting. I had a tooth infection six months ago, and was given antibiotics, and they worked a treat on my gut/reflux issues, which made me think I might have SIBO, too. Do you take antibiotics for it? Or does it just peak and fall by itself? Guess I need to check that out, too. So sorry, you're dealing with all that, and scarring, and an HH. I also have one, found during endoscopy about four years ago... that aside, it was mostly okay apart from gastritis. But the reflux has been gradually getting worse over the years, so maybe due another one. Don't suppose you know how often we're supposed to have one? Every 5 years maybe, or 10? And yeah, you're right, this illness is an awful balance. No treatments are great. But I can definitely recommend the IQORO, and the Xylimelts. When I'm not in a flare-up, the xylimelts help so well at making food go down with no reflux. They're also brilliant at night. Wish they were on prescription. But the IQORO IS now on prescription, so your GP could get you one. Otherwise they cost about 100 pounds. So definitely worth asking the GP for one. Thanks so much again and sorry for asking even more questions!
Hello there. All really good advice, thanks. I do try to use lactose free milk. I recently stopped buying it, because it's expensive when you're the only one drinking it in the house, it doesn't seem a good deal . So maybe that's what's caused my flare-up this time. I'm back on it again now. And yeah, I've given up all the nice tasty stuff, too. Definitely still miss drinking coffee and eating chocolate! It's torture smelling my husbands coffee every morning! I'll maybe think about other types of PPI. Omeprazole was the one I get given, and I always feel rotten on it. Thanks again for the advice. Hope you're keeping okay, yourself.
You're having such a tough time. So sorry to hear that. And really grateful you've taken trouble and time to reply when you're going through so much.
Really hope you're okay with it all. And hope your surgery goes really well. Must be daunting. But good to get out of the way soon. And yeah, ppis... maybe not what we want long-term, but, as you say, better that than an ulcer. Totally get that. Glad it's healed. The drugs might not be perfect, but they do help us. I know what you mean about slow eating. I try to do that. Realised just how fast I eat my dinner now. Wolf it down!! Not good!! But definitely something to work on. You take care of yourself. And all the best for the surgery. And thanks again for the lactose thought. I'll check out all the other dairy stuff I eat. Now you mention it, there's probably loads of things I hadn't thought of. Look after yourself.
Just a minor point. At the moment my prescription brands seem to be updated to cheaper brands where I'm getting reflux. I think the capsules and fillers are not as good.
When I stop the meds things improve significantly.
Happened with Mepacrine (which normally is not capsulated but for some reason mine was- I just cut them open and took the yellow mepacrine tablet out in the end , until prescription stated tablet form), Vitamin D (need gelatine capsule not papery one) and now even Omeprazole (now gone papery).
So tomorrow have meeting with clinical pharmacist to see what can be done.
Probably not major factor for others, but throwing this in.
(Dry mouth does not help, even throat and into lungs got dry and acid went into chest. Will explain to clinical pharmacist)
Duck33, sorry you're going through all of it. At one point my GERD was almost unbearable for me.
A life changer was getting prescribed Pantoprazole (PROTONIX) 40 mg in am before eating. [If it's a tough day or I anticipate GERD happy foods/activity, I take one before dinner as well but this is rare.] I discussed my concerns about long term PPI usage with several docs but was advised that the physical damage from GERD was more concerning to them so I have been on it for years with no noticeable harms.
I have also modified my diet to remove carbonated beverages (except on rare occasions) I fast for 16 hrs so that means I stop eating a good 4 hrs before bed, and I avoid 'acidy' foods. I drink acid reduced coffee every am but don't have it after 3pm, same with certain teas.
Other than that, I have found that there is a certain body weight threshold that is better for me. If I go higher, I feel my GERD starting to act up. If I stay at the ok weight or go below, I'm good. This too has greatly changed my lifestyle as before I would let the lbs creep up until I panicked and lose them again, but now I have this auto sensor that alerts me that it's getting too high and I need to rein it in.
Good luck to you and I wish you the best in your health journey.
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So sorry, you're dealing with all that, and scarring, and an HH. I also have one, found during endoscopy about four years ago... that aside, it was mostly okay apart from gastritis. But the reflux has been gradually getting worse over the years, so maybe due another one. Don't suppose you know how often we're supposed to have one? Every 5 years maybe, or 10? And yeah, you're right, this illness is an awful balance. No treatments are great. But I can definitely recommend the IQORO, and the Xylimelts. When I'm not in a flare-up, the xylimelts help so well at making food go down with no reflux. They're also brilliant at night. Wish they were on prescription. But the IQORO IS now on prescription, so your GP could get you one. Otherwise they cost about 100 pounds. So definitely worth asking the GP for one. Thanks so much again and sorry for asking even more questions! 
Hi all..for those who suffer reflux acid and heartburn..i just want to share this..
Removed rapeseed oil from diet and raynauds has gone
Could this be scleroderma? What should I ask from my GP?
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