Trying to break the PPI addiction, miserable with rebound acid

I don't know that I'm looking for advice, as much as other people who have been or are going through this.  I had RNY just about one year ago (Friday is a YEAR).  I went to the surgeon in the first place to discuss surgery for out of control acid reflux that was not being helped by medicine.  I was told (and confirmed by a second and third opinion doctor) that my best outcome would come via RNY since it would essentially remove the path of the majority of acid to the esophagus.  I was told that most people wake from the surgery free of acid reflux.   The fact that I could start fresh, lose weight and get a better hold on my life were all bonuses for me, but not my main deciding factor to go into this surgery.

Like the doctor told me I would, I was free of acid reflux almost immediately.  However, they told me not to stop taking the PPI that I was on, to wait until the six month visit as this would keep my pouch and remnant stomach protected (I'm guessing from ulcers, but I don't recall if they actually said that).    So I stayed on the PPIs.  I was eager to get off of them, knowing all the research that keeps coming out about the long term side effects of taking PPIs.  

At 6 months I got the okay to go off the PPIs, but when I missed two doses I felt awful.  The acid wasn't coming up, but it was sitting in my stomach making me feel like I was having horrible anxiety.  Just an acidic churning in my gut.   I went back to taking them, but didn't like it.   I started taking them every other day to try to wean a bit, but as soon as I felt that acidic misery, I went back to them.  

So here I am at a year post surgery.  Two weeks ago I decided enough was enough, the side effects are too great.  Not only are PPIs dangerous, but there is good research that shows that taking them has a huge impact on the absorption of vitamins, not something I need to add to my issues.   I have gone off the PPIs completely, taking Zantac (which is an H2, not a PPI) in the meantime while I get off of them.  At two weeks in I'm just miserable with the rebound acid.  I can't eat anything without feeling sick, but I feel sick when I don't eat either.   I've read that it can take 4 weeks to 3 months for the rebound symptoms to subside.   Anyone ever deal with this that can tell me it will be okay on the other end?  Anyone that can sympathize with the physical addiction to this med?    I dealt with withdrawal when I stopped my anti-anxiety/depression med several years ago...that was bad too, but only lasted two weeks.

I cant help much with the PPI addiction, but when I had RNY i was 2000 mg of metformin, and going off of that was very hard. I had to drop my dose down at set times for the first 2 months. We tried going off of it when I first had RNY and that didnt work, my blood sugar went crazy. Even now at almost 11 months, I have gotten back in the habit of checking my blood sugar during the day since I get dizzy really easy. And now that I am off those meds and dont take in but 15 grams of sugar a day, sometimes I feel my body going crazy on me.

So only advice I have is take it one day at a time. When it feels like its to much to handle just breathe count to 30 and dont let it stress you out. Can you take maybe half a dose? or just a smaller dose to just help take the edge off?

I did not have issue with Gerd before RNY ... but had to take PPI for 4.5 years.  Now I am off it... (3-4 months?) and so far so good. I do have days that I can feel the acid..  

In the past -  would get off (very slowly) get ulcer (or severe irritation) had to get back on it... after 2 years ....I just stayed on them until recently... 

I had to get off of them because I could not eat most solid foods and had issues with digestion... Since I was mostly on liquids - slider foods - small qty - often - I decided to taper them down. 

 

I think changing a diet and eating smaller - lighter meals for a few weeks may help with getting off them.... I know that cheese+ meat + tomato combination gives me acid reflux for at least 24 hrs after.. (i.e. pizza toppings - even low cal)  But I can have cheese or meat in tomato sauce.. just not the 3 together.  

 

I already eat pretty small meals, but being careful about the combinations is a very good point.   Tonight I just had some steamed crab and veggies.  That seemed to have settled better than anything I've had in the last few days.  Now if I could just afford to have crab every day!!!

Try a digestive enzyme. They help your your stomach break down what you eat so you make the most of your food. You can get them at whole foods or Sprouts.

I'll take a look, we dont have Sprouts, but we do have Trader Joes, maybe there?

I'm only 3 months out, but I asked my surgeon about this today, because I was on prilosec for the first 30 days after surgery and about 10 days after I finished my prescription, I had burning in my stomach.  Then nurse practictioner gave me a prescription for Carafate and another prescription for Prilosec so I took those and that cleared up my symptoms.  When the 30 day prescription I ended, I again tried to go off the Prilosec and Carafate and had burning (albeit much less), so I went back on the Priolsec.

Today, I saw my surgeon and told him I was concerned about being on a ppi long term.  He said ppis don't really help much for pouch irritation, because there is a very little acid in the pouch.  Most of it is in the remnant stomach.  He recommended that I just use the Carafate.  Maybe that would help you.

Thanks.   I took a Zantac today and it helped a bit.  Hoping that it can get me through.

What is PPI? Is that like Nexium?

I am pre surgery so no help here, just hoping you find relief.

Thanks

Jan