I need some GERDy advice!

Hi All,

So I'm new to the forum. Thanks for having me! This is going to be a bit of a saga, so I do apologize in advance!

After living for 39 years without having had acid reflux problems, I tumbled headlong into GERD in September 2017, and shortly thereafter into LPR. Fun times! I have no history of it in my family, to my knowledge, and I myself am very slim, have good blood labs, and generally avoid processed crap food. But GERD and LPR found me anyways.

My ENT said that I should start 40 mg of Protonix 2x a day. The GI thought that was excessive, and he told me since they saw a bit of inflammation in my esophagus during the upper endoscopy, my problems seemed to be more esophageal than throat and head. So, I went with the GI's advice and have been on Protonix at 40 mg 1 x per day since September.

I went ahead and cut out most of the foods that are not on the GERD diets: pop, alcohol, spicy foods, citrus, and fried foods, and then I generally reduced my intake of other potential irritants (dairy, gluten), in the hopes of being able to control this.

While my acid reflux generally doesn't cause me any pain, nor does it cause me to lose any sleep (my ENT says almost asymptomatic), I do still have some random LPR-sounding symptoms. So, the ENT did the Restech laryngeal probe to see what's going on in my throat. The probe indicated that even on this medication and having altereed my diet significantly, my daily and nightly throat ph levels are still a bit acidic at times. The GI was dismissive of not only the results, but also of the test itself, and said that I should disregard the ENT and continue on my Protonix regimen as I have and he'd reevaluate in the fall. While I generally don't have bad symptoms, I have annoying symptoms, even though the GI says my GERD is of a "light" variety (I can't imagine what moderate and severe GERD are like!) and I should stay on the pills, I lost patience with his "continue-the-pill" regimen and got myself an appointment with a super-stellar GI for next Wednesday, April 11th.

My question, I guess, is what should be my next steps. The ENT suggested an H2 blocker like Ranitidine. I tried it for 2 nights (prescription) and for some reason I had bad dreams for both nights, so I stopped using it. Barring the Ranitidine, my ENT says that, in general, Protonix is the go-to PPI for most people, and that if Protonix doesn't work for me and I still keep these slightly acidic levels in my throat and esophagus, over time my GERD will get worse. Then, she said, I would have to have a surgical intervention to fix the LES.

So I was like Does anyone have any thoughts on this? Is there another type of H2 blocker I could try to help alleviate symptoms? And/or has anyone who was getting mediocre results from Protonix, switch to another PPI and find that their symptoms improved? I see there are a whole bunch of other PPIs out there, so I'm a bit surprised that the ENT was so dismissive about attempts to try another PPI. The ENT said "well, maybe you need the Nissen now!". THAT worries me because my uncle is a general physician and he's always told me that you shouldn't get surgery unless you really need it, whatever the surgery is; on the other hand, my ENT AND the previous GI both suggested that since I'm the ripe-young age of almost 40, even if PPIs do work for me, I'll have to stick to a low-fat diet and potentially dangerous meds for the rest of my life. That being the case, the Nissen would be preferable in order to improve my quality of life. So concluded the last of 3 GIs I've seen. And all this despite the fact that I generally feel well, even digestively!

As I said earlier, my symptoms are generally light. I have had absolutely no heart burn whatsoever, even before being put on the PPIs; at the most, I would get some stinging pain in the esophagus if I ate something bad, like a fried food. But never heartburn. I now get a congested feeling after I've begun eating (regardless of the food), and sometimes I can headaches and sinus pressure. Now that I think of it, I do have that LPR diagnosis, and I wonder if what I really have is the LPR and not GERD? They gave me the GERD diagnosis after the endoscopy, but the acid burn pics show very small burns, and 3 GIs who've looked at them have said that my case is "really very minor". Again, this is minor?

Sorry this is a lot, but this is driving me bonkers! Oh, any dietary suggestions would be welcomed too. From my last GI: "I don't prescribe a GERD diet, it probably won't fit you exactly". From the ENT: "I def would say you should follow the GERD diet". It all makes my head spin! :P

Post Edited (LibrarianGERD) : 4/6/2018 10:10:51 AM (GMT-6)

Thanks so much for your post. It's very helpful.

Funny you should mention it: I had to call the ENT's office AND the GI's office THREE TIMES in order to make sure that ALL of my paperwork was delivered to the new GI I'll see next Wednesday! As in, I had to call three times to each practice requesting that the information, notes, data, reports be sent over, and the first two times, it didn't happen! After a bout of yelling on the phone, however, and after the 3rd call to both, I did verify with my new GI that they do in fact have all of my paperwork from both the ENT and GI. I think to myself, jeez; I'm 39 and of a pretty sound mind! What happens if I become at all incapacitated and I have to rely on these people to do their jobs. Scary!

Yes, I'm new to the forum, so I haven't had much of a chance to scroll through the posts yet. My GIs up until now were almost dismissive of my "slight" GERD, which is painful to me because for several weeks in the fall I wasn't hardly able to swallow any food. I'm not overweight and lost 12 lbs as a result, and the pain, as you can guess, was intense. Indeed, if this is "slight" GERD, I can't even imagine what WORSE GERD is like!

In the meantime, as I've said, I've changed my diet fairly substantially (although I must admit, sometimes, on occasion, I do cheat a bit, because kale and brown rice can't be the only thing on my horizon ). I drink a ton of water, and I've elevated my bed about 10 inches at night. I'll be curious to see what the new GI says, and if he says anything eye-popping, I'll post an update here. Thanks again!

Thanks for the suggestions. I hadn't heard of Pepcid before; I'll ask about it. Yes, I hope the visit to the new GI brings some relief. It feels like a game of hopscotch, trying to land on the right spaces so that I can win the GERD game. I'm hopeful this forum, as you've just done, can provide me with so more insight.

to LibrarianGERD

Go to

https://www.healingwell.com/community/default.aspx?f=45&m=3994243


And read my story and recipe of diet and life style.
(Look at the image of my esophagus and compaire it with yours)
The 22-nd of May I have an apointment to the second endoscopy.
All results I will post here.
Best regards!

Post Edited (Zuko60) : 4/13/2018 8:55:50 PM (GMT-6)

I spent 8 years taking first Prilosec and then Nexium. Life was good I could eat whatever I wanted, and I never looked back, until a month ago. A little back story I have Lupus and several other chronic conditions that require me to take medication that is not friendly to one's stomach. So my doctor in an attempt to save my stomach prescribed Prilosec and eventually Nexium, only ever had occasional heartburn before but I guess this was the drug of the month at the time. I began taking it, no issues, had an iron clad stomach, could eat or drink anything I wanted, no issues. FF 8 years, about a month ago I began having horrendous stomach pain and developed pancreatitis, couldn't digest my food, my stomach swelled up like I was 9 months pregnant, went to the doctor, there hadn't seemed to be any change in labs other than a high Alk Phosphate, much higher than in December. Turns out I had been on this medication so long I was no longer able to digest my food. I wasn't going to the bathroom, food was literally just laying in my stomach. I had no digestion left due to absolutely no acid at all. Apparently it had effected my kidneys, pancreas and my liver, not to mention the toll it had taken on my already fragile bones. Suggestion was to cut from 40 mg to 20 and continue from there. I started taking Pepcid to pick up the slack. Every single time I took the Nexium I got deathly sick, serious pain in my liver so on Day 5 I tossed the Nexium and just started taking Pepcid 20 mg twice a day and supplemented it with a swig of Gaviscon at bedtime. So far so good, I'm not saying at some point I won't have huge rebound and if I do I will be sure and let everyone know but for right now I'm not feeling too bad at all, of course we all know that can change in a New York minute. Have been eating a pretty bland diet and that seems to be working for me. I was going to do the weaning thing but because of how sick it was making me I just decided to chuck it all together. These meds are horrible and do horrible things to you. I realize 8 years ago all these studies weren't in but I guess I don't understand why we weren't put on the H2 blockers instead of going to the big guns right off the bat. Prayers to all of you, we're all in this together, and I hope we are successful in getting our lives and our stomachs back. Will continue to update..

Prayers..

Becky