Getting off the PPI's

[GiBo]

I had some chest pain and reflux and couple of years ago. Had an endoscopy and I have a hiatal hernia. Doc gave me PPI's. He assures me that it's fine to take these long term, but there seems to be a lot of research suggesting otherwise. I've asked two pharmacist and they both said there's no way they'd take them long term. Anyone been on a PPI regine and quit? I hear the rebound can be brutal. I've already started to go every other day and I feeling it.

[PB]

Curious to hear quitting experiences as well. Expecting unpleasantness. Especially interested in impact of expected major increase in ant-acid intake.

[swissiphic]

My own issues are different but FWIW, here's my long term, full report.

Undiagnosed Celiac disease until 2012 with a lifetime of g.i. issues including long term, chronic acid reflux. I took tums on occasion but mostly just lived with the burning. Blame that on equal parts being an idiot, cluelessness, ignorance, sheer denial and stoic, sadistic tendencies.

During an endoscopy performed for the Celiac issue investigation, quite severe scarring of esophagus was found (i believe at the esophagegal sphincter, but can't recall precisely) with a diagnosis labeling of Barrett's esophagus and chronic GERD. I was put on PPI's and was told would have to take them for the rest of my life. They worked but I was a reluctant med taker, so researched alternatives.

Along with learning about a strict, gluten free diet, read about reflux trigger foods and lower acidity diet. Tapered off the PPI's to see if an initial diet change would mitigate symptoms but was unsuccessful as it seemed that anything 'fun' to eat triggered the reflux. Went back on PPI's for another few years.

Contemplated the issue further and decided to experiment with both a change in mindset and foodstuff intake. Tried to replace the quest for taste = satisfaction to food = fuel.

It was really hard but results were/are quite astounding.

Switched to eating a very basic 'mush' of food for breakfasts and lunches. Same meals every day. Dinners are varied and 'normal'.

The breakfast/lunch food is a baked mix of red cabbage, potato, brocolli...sometimes with refried beans sometimes with chicken. No seasoning aside from a bit of sea salt. Chop it all up, add a cup of water, a good splash of olive oil. Cook large batches in an oven roaster, bake at 350F for about 40 minutes, stirring occasionally. Bake till it's all nice and soft.

Add raw spinach to every meal.

The next PPI taper resulted in an initial re emergence of reflux symptoms but after two weeks of strict employment of this food routine, symptoms disappeared completely during the daytime but would present themselves after 'normal' dinners. Further tweaking of dinners to eliminate trigger foods (for me: onions, garlic, garlic powder, hot peppers, tomato sauce, all alcohol, worse with red wine) and an addition of a good handful of raw spinch with every dinner, resulted in a slow taper of the apres dinner reflux. After about a month or so the evening reflux disappeared completely.

After another few months of that routine, I slowly started introducing previous 'trigger foods' and drinks just to see if there was any difference in g.i. reaction. Results were: red wine, hot chicken wings, onions and garlic that weren't carmelized and garlic powder all brought back minor reflux. Other foods that previously triggered reflux like hot peppers, tomato sauce, coffee on both full and empty stomach didn't. I now can basically snack on anything I want in between or after meals, drink gallons of coffee with no re emergence of reflux symptoms.

G.I. function in general is much improved. I feel better in general with the healthier staple foods. Over time, I got used to the taste/texture and actually enjoy it...day in day out.

So where I'm at now is have PPI's on hand and use them for specific days where I know dinner will contain trigger foods and/or if i'm gonna down some red wine or other booze. This reflux mitigation measure works very well.

Long term, I am well aware of the risks of the potential of 'silent reflux' with no noticeable symptoms and a progression of the Barrett's esophagus to cancer so I'm looking forward to the next endoscopy next year to see if the above optimism is all b.s. or if it's legit.

Just sayin' what my journey was/is and what seems to be working for me. Everybody is different of course and YRMV. Much luck figuring out what works for you.

(pic of a 5 day batch of breakfast/lunch food that just popped out of the oven)

[XXX-er]

Undiagnosed Celiac disease until 2012 with a lifetime of g.i. issues including long term, chronic acid reflux. I took tums on occasion but mostly just lived with the burning. Blame that on equal parts being an idiot, cluelessness, ignorance, sheer denial and stoic, sadistic tendencies.

]

don't beat yerself up too bad I got a beer n pizza loving MD bud, he last guy I would figure to be celliac who I consider to be very smart ... didnt figure it out till age 60

but gluten intolerence doesnt care how smart you are

[glademaster]

I was on daily Prilosec for about a year shortly after it came out (back when it was still RX only). Had heinous GERD sometime around 7th-8th grade that would keep me awake for damn near the whole night, multiple nights a week. Did the barium test to get my diagnosis. I was at the point where I was drinking 3-4 full bottles of Mylanta a week while also taking Pepcid and Zantac daily. Trust me, I was slaying the third floor bathroom before that thread was even a twinkle is someone's brown eye.

That being said, the Prilosec worked miracles for me, and I don't recall any special protocols when I stopped using it, nor did I have recurrences of GERD during/after quitting it. I remember quite a few anxious, sleepless nights after stopping it because I was worried about the reflux returning, but it didn't. Nowadays I take Pepcid infrequently, probably 2-5 times per year and rarely have any GI issues. (knocks on wood)

[mel221]

Now you gone and done it. Talking about Gerd and PPIs and such.

TLDR; I had terrible Gerd symptoms, pain, and issues. Doctors recommended a lifetime of taking all kinds of med. I figured out my problem and now have no Gerd (acid reflex) and am taking no drugs.

My story almost begins in 1996 when I am in my mid 30s(yea, I am old now). I had a serious case of painful acid reflux for about 6 months. It appeared suddenly and then it just stopped. I had no idea what was going on. (later, I figured out this was caused by drinking Red Wine).

Then, in 2008, the painful acid reflux came back with a vengeance. I remember having chest pains that made me think of going to an ER for having a heart attack. Bad pain. Started taking the OTC Gerd meds (Prilosec, Pepcid, Nexium, etc.).

Saw my doctor who recommended an Endoscopy. The Endoscopy reported that I had Gerd and some damage to the esophagus lining. I don't remember anything else.

So, I needed to take meds to reduce the acid in my stomach. And, I had to make the necessary lifestyle adjustments including raising the head of my bed 6 inches. What a hassle.

The explanation for my condition was the LES (lower esophageal sphincter) was not closing properly. It was lazy.

My own research on the internet suggested I need to take HCL pills to increase the acid in my stomach to get the LES to close.

I read the list of GERD trigger foods and tried to eliminate them from my diet. Caffeine, Tomato sauce, mint, red wine and a lots of spicy, good tasting foods. I would eliminate these foods and my symptoms did not improve.

Around 2010, I was pretty bad off and tried a bland diet. Something like chicken soup for breakfast, lunch and dinner. After about a month, the bland diet did help. A lot.

I then starting adding foods back into my diet and found my triggers;

Caffeine is on the usual suspects for Gerd. There are 3 different types of caffeine; Caffeine in Coffee, Caffeine in Tea and Caffeine in Chocolate. Turns out, I am only sensitive to the Caffeine in Green Tea. To this day, I have a morning double espresso without any GERD issues.

Tomato sauce is on the list for GERD. Tomato sauce has never bothered me. Neither does spicy foods of all kinds.

Red wine is on the GERD list. Red wine is a major trigger for me.

It took about a year to figure out Green Tea and Red wine are GERD trigger foods for me. It took two more years to figure out my last trigger. Spinach. Yea, didn't see that coming.

When I say trigger food, I mean a food that is consumed multiple times a week. A glass of red wine or green tea does not bother me. Nor does a single spinach salad. But, buying a bag of spinach and have a spinach salad a day will cause me GERD problems by the time the bag is finished. And, having a single serving of each of my trigger foods will cause a Gerd flareup. The effects are additive.

And that is the challenge. Simply consuming a trigger food didn't cause a problem until the 3rd or 4th serving within a week.

So, if you really want to be medication free, you will need to start by finding a bland diet where you have no GERD symptoms for a month. This allows you to heal and establish your baseline. Then add foods back to your diet one at a time in significant amounts. If you are adding red wine back to your diet, have a glass or 2 every day for a week.

And yes, this means you need a diet log. You need to maintain a diet log and write things down; what you eat and how much and how you feel days later.

It took me years to find that spinach was a trigger food because after eliminating 2 other triggers (red wine, green tea), I was feeling much better and I just never suspected spinach could be a problem.

Good luck on your journey.
FYI -
Also, I reduced taking the various GERD meds in favor of taking several Gaviscon tablets after I lie down in bed. I chew and swallow the tablets in bed. This helps to form a foam cap in your esophagus that prevents the acids from travelling upwards.

[GiBo]

Interesting replies. Thank all.

Here's where I'm confused about my issue. I have a hiatal hernia. I have not been diagnosed with celiac or any other digestive condition. My hiatal muscle can't close off the stomach and acid can get into my esophagus. But acid it my stomach is a normal part of digestion and my natural gut microbiome. So I'm not sure if I'm producing too much acid, or if it's just the acid I do produce comes up due to the hernia. So if stomach acid is a normal part of my digestion and gut biome, it seems like a bad idea to reduce this because of a physical issue. But the doc isn't real keen on a surgical repair of the hernia. It's a conundrum.

[Dantheman]

Interesting replies. Thank all.

Here's where I'm confused about my issue. I have a hiatal hernia. I have not been diagnosed with celiac or any other digestive condition. My hiatal muscle can't close off the stomach and acid can get into my esophagus. But acid it my stomach is a normal part of digestion and my natural gut microbiome. So I'm not sure if I'm producing too much acid, or if it's just the acid I do produce comes up due to the hernia. So if stomach acid is a normal part of my digestion and gut biome, it seems like a bad idea to reduce this because of a physical issue. But the doc isn't real keen on a surgical repair of the hernia. It's a conundrum.

IANAD, but you are definitely correct that PPIs treat the symptom of your condition and not the cause. Whether the risks of long-term PPI use outweigh the risk of surgery to correct the hernia is up to you and your doctor(s) to decide. Paging old goat....

[old goat]

Here's what the Mayo Clinic says about long term PPI's:
"Abstract
First introduced in 1989, proton pump inhibitors (PPIs) are among the most widely utilized medications worldwide, both in the ambulatory and inpatient clinical settings. The PPIs are currently approved by the US Food and Drug Administration for the management of a variety of gastrointestinal disorders including symptomatic peptic ulcer disease, gastroesophageal reflux disease, and nonulcer dyspepsia as well as for prevention of gastrointestinal bleeding in patients receiving antiplatelet therapy. PPIs inhibit gastric acid secretion, and the most commonly associated adverse effects include abdominal pain, diarrhea, and headache. Although PPIs have had an encouraging safety profile, recent studies regarding the long-term use of PPI medications have noted potential adverse effects, including risk of fractures, pneumonia, Clostridium difficile diarrhea, hypomagnesemia, vitamin B12 deficiency, chronic kidney disease, and dementia. These emerging data have led to subsequent investigations to assess these potential risks in patients receiving long-term PPI therapy. However, most of the published evidence is inadequate to establish a definite association between PPI use and the risk for development of serious adverse effects. Hence, when clinically indicated, PPIs can be prescribed at the lowest effective dose for symptom control."
Ranitidine is an option (oh wait). Surgery has it's own risks, and untreated GERD can cause strictures and cancer among other things. IOW there's no risk free effective treatment. Based on current knowledge I would still go with PPI's for chronic GERD and reserve surgery for cases not controlled with PPI's or for complications of GERD. One option, for which I can offer no proof, might be to take vacations from the PPI's by using an antiacid--at least in theory the body might heal whatever damage the PPI's might be causing. The problem with assessing drugs for complications of long term use is that long term people get sick from a lot of things--is it the drug or age or something else.

I would definitely not take HCl pills.

For occasional symptoms I like Tums.

[PB]

I've been told that if you've been diagnosed with Barret's esophagus after previously being diagnosed with GIRD + hiatal hernia, get thee to a surgicator. I've got the GIRD + HH, but no Barret's yet, however my brother did progress to Barret's, and is about 10 months post-HH surgery. He had few issues adjusting to the newly restricted esophagus (trying to get food down to the stomach) but fairly quickly got past it and has been GIRD free so far. I have a lot of respect for folks who can adjust to drastically restricted diets, but I've decided that I've reached the stage in my long life where I'm not wiling to eliminate some of the few remaining pleasures available for geezers. Besides hookers and blow, of course.

[old goat]

"Barrett's esophagus is a premalignant - not malignant - condition. Its malignant sequela, esophagogastric junctional adenocarcinoma, has a mortality rate of over 85%.[36] The risk of developing esophageal adenocarcinoma in people who have Barrett's esophagus has been estimated to be 6–7 per 1000 person-years,[37][38] however a cohort study of 11,028 patients from Denmark published in 2011 showed an incidence of only 1.2 per 1000 person-years (5.1 per 1000 person-years in patients with dysplasia, 1.0 per 1000 person-years in patients without dysplasia)"

IOW the risk of cancer is about 0.1 to 0.7 percent per year for an individual, depending on whether there are precancerous cells seen.

[PB]

Good data, OG. Any more on success rate and complications for hiatal hernia surgery?

My father died of esophageal adenocarcinoma - brutal way to go. Even with the low rate of EAC after developing Barrett's, the high rate of mortality with EAC seems to indicate HH surgery unless the surgery itself has issues, especially given my family history.

[char_]

https://my.clevelandclinic.org/healt...atment-of-gerd

Cleveland clinic diet and trigger food elimination list helped me a lot. I don't have a hiatal hernia though.

Did about 4 weeks of really strict diet control and continue to avoid certain foods. Much better than taking PPIs as far as I am concerned.

[old goat]

Good data, OG. Any more on success rate and complications for hiatal hernia surgery?

My father died of esophageal adenocarcinoma - brutal way to go. Even with the low rate of EAC after developing Barrett's, the high rate of mortality with EAC seems to indicate HH surgery unless the surgery itself has issues, especially given my family history.

Hard to say. The success and complication rate is highly operator dependent. The literature says about 80% long term success in relieving reflux symptoms. Trouble swallowing, bloating, even trouble vomiting are potential complications. It's important that reflux be documented by monitoring the pH (acid level) in the esophagus--not all symptoms that sound like reflux are due to actual reflux.

[PB]

Thanks OG; I'm in no rush, but thinking about the future.

Back Hiatal Hernia strategies: volume is the enemy, small meals and eating slowly makes a difference. And fat/lipids seem to be an issue for me.

[GiBo]

I'm in the same boat as you PB. And OG, your take is exactly the same as my doc's.

I'm weaning myself off of the PPI's and we'll see how it goes. Last time I tried I went cold turkey. I got really nauseous for a couple of weeks. Went into doc, and he put me back on. I backed off to every other day last week. Seems fine. Skipped Thursday-Sunday. Took one last night. Going to skip two days at a time this week.

I'm trying to watch what I eat. But so far in this journey I have not been able to identify a particular trigger. The elimination diet may be in my future.

[criscam]

big drinking night a couple years ago seemed to start my issues (assume that was the reason but...). dealt with for a bit, then PPI's, off them, back on, endoscopy which reported hiatal hernia. started to watch my diet a little more then tried to cold turkey the PPI's (actually just forgot them on a hut trip) and things got worse again. Back on them. Good weeks/days and bad since then but seems a lot worse lately. More bloated feeling as well. Thinking about really tracking my diet for a bit. I've eliminated weeknight drinking and have switched to cold brew coffee but guessing these vices are high on my trigger list. Easier said than done to eliminate but getting close to the point where I might have to (ok, maybe after I've eliminated some other foods from the list )

[char_]

The strict diet sucked, but was really worth it because it allowed my system to settle down. Tapered off the PPI while on the strict diet and have been pretty good for the most part.

I basically ate saltines, carrots and non fat yogurt for four or five weeks.

Stress is definitely more of a trigger than I realized as well.

[PB]

Assuming those were cooked carrots, you forgot to mention the Miralax component necessary to combat colonic pluggage

[glademaster]

Stress is definitely more of a trigger than I realized as well.

This. Stress and anxiety played an equal if not bigger part in my issues than diet.

[old goat]

I don't think anyone has mentioned not lying down for a couple of hours after eating. Also elevate head of bed--not by propping your head up on pillows but tilting the whole bed by putting books under the bed legs at the head of the bed. (Comic books if symptoms mild, medical books if severe. If married will likely require separate beds.)

[glademaster]

I don't think anyone has mentioned not lying down for a couple of hours after eating. Also elevate head of bed--not by propping your head up on pillows but tilting the whole bed by putting books under the bed legs at the head of the bed. (Comic books if symptoms mild, medical books if severe. If married will likely require separate beds.)

This too. I had the legs at the head of my bed up on 4x4's from the time I had my issue until I left for college.

[criscam]

This too. I had the legs at the head of my bed up on 4x4's from the time I had my issue until I left for college.

same here.
I've also tried to cut down on the size of my meals as the bloating is (obviously) much worse if eating too much.

[PB]

Just bending over to pick something up requires a careful, calculated approach to keep from getting too close to horizontal (going past horizontal risks a mouth full of burning yech). Adjusting bindings and boot buckles can be a challenge. I drop down on a knee, which also minimizes any compression to the abdomen - requires binding release of course so can be problematic at times.

[old goat]

Just bending over to pick something up requires a careful, calculated approach to keep from getting too close to horizontal (going past horizontal risks a mouth full of burning yech). Adjusting bindings and boot buckles can be a challenge. I drop down on a knee, which also minimizes any compression to the abdomen - requires binding release of course so can be problematic at times.

Bend at the knees not the waist.
Have your wife buckle your boots.
(But seriously as someone with increasingly limited flexibility I do any boot buckle adjustments on a sidehill --adjust the uphill boot, turn around and adjust the other. A lot easier than doing it on the flat. Apologies if that's too obvious to mention.)