Desperate - Please help! Fighting Prilosec Withdrawal for third time

[Andre Garcia 3]

Hey everyone...I could really use some help. I'm on my third time trying to wean myself off Prilosec and doctors so far have been pretty useless. None of their directions have worked. After learning that omeprazole takes about 45 days to be gone from your body, I decided to take the phased approach to withdrawal to another level. The first two times, I tried doing exactly what my surgeon suggested, which was to start taking 20mg every other day for a week, then every two days for a week, then every three days for a couple weeks, and then stop alltogether. When I tried stopping, within a few days I started experiencing burning sensations in my intestines. Not my stomach...but my actual intestines. I would up giving in and going back on 20Mg Prilosec every day. A couple months went by and tried for my second time. This time I tried a similar method, but tried to use 20Mg Pepcid and the occasional Tums...that didnt' work either. The pain was unbearable. For my third attempt, I took the drawn out pill cutting approach to really give my body time to adjust. For two months, I was on half a dose (10mg) without issue, then on June 29, I dropped down to 1 quarter pill (5mg), and that's when the trouble started. By the 9th day on 5mg, I started feeling pain in my intestines. The last few nights, I've been getting up because the pain is too intense and having to drink Water and Pepcid to try and calm my intestines down...nighttime has been the worst just recently. Now we are in August and I have basically a month before I'm supposed to stop taking it completely, but I'm afraid I'm going to have an ulcer or perforation somewhere in my GI tract (which has already happened to me once--nearly killed me). Has anyone else experienced this? If so, how did you stop taking Prilosec without all this pain? Please...I'm desperate for answers.

[Orchids&Dragons 9,046]

Wow, you're scaring the crap out of me. I'm on 40mg 2x/day. I hope you find some answers. I'll be following to see what you find out. Good luck.

[MarinaGirl 608]

Has a GI doctor ever assessed you for and recommended a Nissen fundoplication, which is a surgical procedure to treat GERD disease and hiatal hernia? PPIs just take mask symptoms but don’t resolve root cause, so you may need to address the underlying issues in order to correct painful GERD symptoms.

GERD is no joke and needs to be managed by clinicians with extensive experience with it in bariatric patients. Your RNY surgeon may not be the best person for this.

I speak from experience with this myself. I recently had a hiatal hernia repaired, which appeared small on imaging, but was much larger in the operating room. A new revision surgeon fixed the HH and added the fundoplication. I’ve been dealing with this issue for years and am finally optimistic I may be on the mend for good.

Edited August 1, 2018 by MarinaGirl

[Andre Garcia 3]

I have had both a colonoscopy and endoscopy and nothing but a very small hiatal hernia was found (too small to recommend operating on it). I don't have acid coming up on me at all...no burning in my stomach. It's literally a burning sensation in the upper left and upper right quadrants of my abdomen, right below my diaphragm (chest cavity).

[MarinaGirl 608]

I wonder if your small hiatal hernia is actually larger than it appears on imaging?

[RickM 1,747]

It sounds like you are doing the right thing to wean off of them, but that your body isn't ready to, as if whatever underlying problem has not been resolved. This certainly isn't normal.

Typically we hear of VSG patients having problems with acid reflux and heartburn that sometimes can't be resolved, so an RNY revision is sometimes done, though reflux can hit the bypass too sometimes, though fairly rarely. The asnastomis between the pouch and intestine is sensitive and the typical location for ulcer problems - the intestine where the pouch joins isn't resistant to stomach acid like the duodenum is, hence the sensitivity. I would think that the endoscopy would have shown any problems there. That leaves the remnant stomach and upper bypassed limb as a possible problem area. The remnant stomach is where most of your acid production typically occurs, but that is usually neutralized by bile that's introduced into the duodenum. so perhaps there is something wrong there that is creating an imbalance. Unfortunately, that doesn't show up in an endoscopy with your bypass anatomy. You mention that you are following your surgeon's instructions on taper off the PPI, so I assume that he is in the loop on this problem and should be able to suggest the next step.

Does the omeprazole resolve the problem when you are on it, and this is just a problem when trying to taper off of it, or is this a continuing problem even with the omeprazole? Perhaps whatever quirk there is in your body isn't ready to give it up, as desirable as it may be to do so.

If you haven't found her already, maybe you can reach out to this gal who is having significant ulcer problems with her bypass - there may be some insight from her problem that can shed some light onto yours.

This is a puzzle, and as my PCP likes to say, you don't want to be an "interesting" patient - great for the MD's to have an interesting problem to solve, not so great for the patient. Perhaps this is your turn. Been there, done that myself on the interesting patient thing, with a different problem.

Good luck in getting this resolved.

[Sadiebug 206]

I'm in a very similar situation except with nexium. The plan after my gastric bypass was that I would be able to come off the nexium completely since it would "cure" my GERD. No luck so far! I am down to 40mg every other day which is a significant decrease from what I was on pre-surgery. My doctor has me taking a pre-digestive enzyme before every meal which helps quite a bit. You can buy those over the counter so maybe consider that? I have the exact same pain you describe when I try and quit the nexium fully - and I was so freaked out about it the last time that I called my surgeon and got in for an endoscopy right away to make sure it wasn't an ulcer or anything. All clear thankfully. My surgeon and my GI doc are both ok with where I am for now and we will continue to try and wean as much as I can without pain. I will say that when I first dropped to every other day I felt a lot of pain on the in between days - but now that I've been doing that for about 2 months I don't notice anything. Not sure if that is due to the pre-digestive enzymes or if it is my body adjusting finally to the lower dose. I think it's probably time for me to drop my dose even further but I'm just not eager to go through the pain again...

[Andre Garcia 3]

So...I had a perforated intestine 3 months after having RNY...RNY was Nov 2016 and perforated intestine was late February 2017...well over a year ago. I tried 3 times to wean off Prilosec, each time trying something different. The pain got so bad, I nearly went into the ER, but met with my surgeon instead. He recommended I go back on the half dose of Prilosec until November for my two year checkup, and then we would revisit things. ry He also ordered a fresh set of labs to see how I was doing with Vitamins, minerals, and other things. In the meantime, I went back on a full dose of Prilosec for the last few days, and sure enough, the intestinal pain is completely gone. I'm going to cut down to 50% again next week...I figured full dose for now to give my intestines some time to heal from whatever I had put them through on a 25% dose. I think one challenge I have is that I was Water fasting while also trying to wean off of Prilosec...next time I try, I won't drink coffee or drink wine nor fast at all so I don't trigger things that could increase my acidity. Ugh.

[MarinaGirl 608]

Have you tried taking H2 Blockers while trying to wean off PPIs? I’ve heard that can help one get over rebound reflux while tapering down.

[Andre Garcia 3]

Yes, I tried taking Pepcid and experienced burning intestinal pains anyway. At one point I was up to 40mg Pepcid with no relief.

[Frustr8 7,886]

SCARY!

[MarinaGirl 608]

58 minutes ago, Andre Garcia said:

Yes, I tried taking Pepcid and experienced burning intestinal pains anyway. At one point I was up to 40mg Pepcid with no relief.

I’m so sorry; that sucks. How about Zantac or Tagamet? They’re also H2 Blockers and may work differently (hopefully better) than Pepcid.

[Andre Garcia 3]

Haven't tried Tagamet in over 10 years because it didn't help me pre-op with heartburn I used to suffer from, but I guess I could try it and Zantac and see if they help me wean off this poison (Prilosec).

[Frustr8 7,886]

When I was talking to my or rather one of nurse practioner S and dieticians it was mentioned Prilosec/ omeprasole, was not given as antiacid. but rather as an ulcer preventive. Whew Folks, this bears reassessment! When I had my Last EGD and my gastritis and gastric ulcer,was dicovered , I at that time was on this sacred cow, omeprazole, it had not prevented ulcer formation, although I had been on it continously for over 6 weeks at that time, That,Is why I was on Dexilent, a PPI that was working and oh no you removed me from. Your staff excuse? Dexilen t minicapsules don't have a pull-apart feature. Do you really think I was too dense to cut them and apply the granules to my food as you do the Big O.? Did they listen to what I was saying? Hmmn they did both get strangely silent.😞

[Beachladee3 74]

I'm in a very similar situation except with nexium. The plan after my gastric bypass was that I would be able to come off the nexium completely since it would "cure" my GERD. No luck so far! I am down to 40mg every other day which is a significant decrease from what I was on pre-surgery. My doctor has me taking a pre-digestive enzyme before every meal which helps quite a bit. You can buy those over the counter so maybe consider that? I have the exact same pain you describe when I try and quit the nexium fully - and I was so freaked out about it the last time that I called my surgeon and got in for an endoscopy right away to make sure it wasn't an ulcer or anything. All clear thankfully. My surgeon and my GI doc are both ok with where I am for now and we will continue to try and wean as much as I can without pain. I will say that when I first dropped to every other day I felt a lot of pain on the in between days - but now that I've been doing that for about 2 months I don't notice anything. Not sure if that is due to the pre-digestive enzymes or if it is my body adjusting finally to the lower dose. I think it's probably time for me to drop my dose even further but I'm just not eager to go through the pain again...

Why is it necessary to go off of the anti-GERD meds at all, if they work?

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