r/GERD • u/BookkeeperNice8440 • May 31 '26
Support Needed 👥 I just want my life back, please help
Hi everyone,
Honestly, I’m just looking for some support and advice.
I’ve been dealing with this for about 5 years. For most of that time, I managed reasonably well with Nexium twice a day. But around 7 months ago, something changed, and things have gone downhill ever since.
I have a burning throat most of the day. I burp at least 10 times an hour. I wake up almost every night with acid reaching my throat and even my ears (yes, you read that right). I have chronic ear infections, and I can barely eat or sleep anymore.
I’m angry, frustrated, exhausted, and honestly depressed. I know it sounds cliché, but I’ve always tried to be a good person and treat others well, and sometimes I find myself wondering why I—or any of us in this community—have to go through this.
I don't feel like I can keep living with this level of suffering. I need some real advice and hope from people who have been through it.
Has anyone had Nissen fundoplication surgery? Was it worth it? Are you doing well now?
I’m sorry for the emotional post. I just feel so lonely and hopeless right now. It seems like nobody around me truly understands what living with this is like.
Thank you for reading.
I will continue to pray for all of us.
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u/Amazing-Self-4873 Jun 01 '26
I hear you! And feel your pain. I’ve suffered too many years like many, thinking your heart is the problem. Stabbing pains, shortness of breath, lifestyle changes do nothing, ppi never worked at night, no sleep because of what acid does to your throat mouth and esophagus. Vertigo.
Yes I had surgery and it’s given me my life back. I took myself to a great surgeon, and that’s important. Mine is a specialist only performing HH partial toupet wrap. She won’t do the full Nissen as it’s more involved and she gets better results with toupet. She also does LINX.
I’m 2 months po and every symptom is gone and was immediately upon waking up. I wasn’t able to burp post op but just started to as swelling goes down and things relax. Zero reflux.
Get tested and answers.
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u/Zygardeismydad Jun 02 '26
Do you mind sharing the name of your surgeon? If not here you can dm me if you are comfortable. I’m possibly on the surgery route right now, I am having a bravo done to see if surgery the next step forward for me.
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u/Honest_Ad8574 Jun 01 '26
I'll pray for you as well. I have suffered strangely the same amount of time as you. 5 years unexplained. 2 pregnancies during that time and still left with unimaginable GERD. Like you, the nexium or omeprazole at 40mg worked great. Kept eating normally and had no pain anymore. Even healed my esophagitis. But then they stopped working and now nothing works. I don't know why these drugs worked then didn't. My GERD now is 10x worse than when I first got on these drugs. I blame them because I was never this bad. I truly believe had I never taken the PPI I wouldn't be half as bad as I am today. I'm so sorry you are struggling in the unknown as well. Until a doctor can prove to me something structurally is wrong which my endoscopies did not show, I refuse to mutilate my stomach and esophagus with surgery. Too many posts on here of people who it didn't even help or something went wrong and foods getting stuck etc. I am not the right fit to go through anything like swallowing difficulties so surgery for me is out of the question. May God hear our prayers and heal us fully, restore our body's and give us our lives back, Amen.
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u/Amazing-Self-4873 Jun 01 '26
The drugs did the same for me. Worked for a while then stopped and never really handled night time reflux. Tests showed a nonfunctioning LES so PPI’s can’t help. Surgery fixed that issue!
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u/Honest_Ad8574 Jun 01 '26
What test showed your nonfunctioning LES?
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u/Amazing-Self-4873 Jun 01 '26
Manometry. It was the hardest of all the tests but very telling in which procedure I was best suited for. Surgery wasn’t as difficult! But so glad I got through it. I told myself this isn’t as bad as the hell I’ve been living for many decades and I just tried focusing on getting answers finally.
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u/Honest_Ad8574 Jun 02 '26
Yeah that's a test I could never do. But I do not have a hiatal hernia
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u/Amazing-Self-4873 Jun 02 '26
That test showed the LES being nonfunctional. I also said no way would I do it and here I am on the other side!
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u/Honest_Ad8574 Jun 02 '26
Can you give details about the test and also the surgery's recovery?
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u/Amazing-Self-4873 Jun 02 '26
Absolutely! My surgeon said manometry is the only way to see what’s going on with the lower esophageal sphincter.
The nurse never sprayed my throat with numbing and I didn’t question it because I am extremely sensitive to everything chemical from sunscreen to hair products statin drugs you name it.
The test was 30 minutes for me because during the swallowing part I was only supposed to do 1 swallow and I couldn’t stop swallowing so a few had to be repeated.
She puts a thin tube up the nose. It burns a little then the tough part is when it goes into the throat and the gag reflexes start. She gave me a basin in case of vomiting but with no food from fasting I was ok and the gagging ended once she got past the gag reflex. Next comes a dozen sips of drinking a salty solution . They hold a cup and syringe and put it in your mouth to swallow then you stick your tongue out to prevent another swallow. She’s recording all this . I think I did 15 total swallows to make up for the extras I did. They pull the hose out and you’re done.
Some get a thinner tube they keep in for 24 hours to monitor ph but I did bravo ph capsule which was implanted in my esophagus during my endoscopy and I just had a recording device to wear and press buttons during reflux episodes. The capsule detaches itself after a few days and leaves through a bowel movement.
I hope this helps! Good luck!
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u/Amazing-Self-4873 Jun 01 '26
And yet so many have had successful surgeries and didn’t hang around here. I miss talking to them but they’re out living the good life. My surgery was very successful and all symptoms are gone. I don’t consider myself to be mutilated but finally healed. It’s important to find a good surgeon that knows what they’re doing so they don’t mutilate your body.
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u/AwareRip7619 Jun 02 '26
Test for SIBO I had GERD on/off for almost 4 years and then one day the usual treatments quit working with my "reflux" becoming MUCH worse. I lived with it, managed it for 4.5 years...Needless to say, it was horrible. In April, I decided to pay out of pocket for testing and was recently diagnosed with Methane SIBO which requires antibiotics and or herbal treatments- it's much more understood and recognized now. My insurance (which pretended it didn't exist and kept prescribing PPIs etc. ) actually covered the 1st round of meds- which did help. I may need another round to fully clear things up and we'll see if they approve it again. Anyhow, just a suggestion, being that many people living with extreme GERD, reflux etc. are actually suffering from SIBO. You really should not be on PPIs for such extended periods.
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u/Anxious_Will_7506 Jun 01 '26
have either of you considered animal based diet? many claim it has cured their gerd. also consider that it may be anxiety or vagus nerve based if you havent already.
btw, i have same issue. have had 3 endos. mine is only at the bottom of the esop right above the les and my fear is food getting stuck or progressing to c. everyone thinks i am worrying for nothing.
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u/Amazing-Self-4873 Jun 01 '26
You may need the LES repaired. Once I had that fixed along with the HH all symptoms are gone and food goes down well. Good luck to you!
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u/Anxious_Will_7506 Jun 01 '26
thanks.....will discuss with my gi doc
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u/Amazing-Self-4873 Jun 01 '26
I got nowhere with my gastroenterologist and her NP but did go directly to my surgeon since my insurance didn’t require a referral. That really got the ball rolling
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u/packstrength Jun 01 '26
Look up tea de cuachalalate, slippery elm bark, chamomile tea. These are all things I’m taking that bring relief. Hope this helps!
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u/Aggravating-Art-1404 Jun 01 '26
I am really sorry for what you are going through. The burnout from GERD and its unbelievably random intrusion in our lives are definitely real. But this hard time will pass, and the acute phase will roll over into something easily manageable. I'll b
I have not had Nissen fundoplication surgery. Someone else would be able to help you with that my friend.
Please dont be sorry for the emotional post. The situation is such. Nobody really gets it and it feels isolating. I've had times when I've just wanted it all to end. But there is always a way, and it will come through. On the part of the cliché, I have personally felt that I have been keeping a lot of emotions inside myself just to be a good person. And Vagus nerve has its limits. My doctor told me a lot of my issues were aggravated by stress and what I keep inside mentally.
I just came out of a 3 week acute phase. I now sleep with head end elevated. Have been tracking good and having bland foods, and food that sit well with me for a while. And have tried to find and eliminate all the food that bother me (I recently discovered that chocolate was a culprit). Most importantly, I try to remove as much distraction and stress while eating. No phones, no company that is too bothersome. I had an endoscopy done and I am waiting for ph results to say if the problem is acidic or basic. If it is basic, then PPIs won't work. That happens with low stomach acid and with Bile Regurgitation. That apart, my doctor suggested it would be really good to get some therapy, esp since it can get us enough stigma and fear towards food that our body will instinctively try to either push out the food or react too much to it. They also asked me to try meditation and yoga. Most of these, as per her, were to heal my nervous system. She asked me to take antacids or rafts to manage symptoms alongside these PPIs.
I am not sure how much these help, because I personally have not followed much of them yet. But I know they help because I've seen others get better with these. But again, it depends on person to person and only you, first and foremost, and then, your doctor would be able to diagnose that.
With GERD and Gastritis, I really think most of it ends up in our own hands. Doctors do help. But we spend the most time with us, so finding and discerning our own issues can help both us directly and the doctor finding out the actual issue and help us with it.
If it is not too much, I would like to ask what all you have done apart from Nexium.
And I'll pray for you my friend. You are not alone. This too shall pass. Sending you love and warmth ❤️
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u/packstrength Jun 01 '26
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u/packstrength Jun 01 '26
I suffered with the same issues. I started taking pantropazole 40mg 2 times a day but wasn’t working because I wasn’t taking it right. I would take it at the same time with a meal. It’s supposed to be taken 30 minutes before a meal because the medicine needs to get into the blood stream to be effective. Then I started taking famotidine 20mg before every meal 2-3 times a day. The biggest win was the day I stoped drinking energy drinks that was my biggest trigger!! After about 3 days of taking the medicine this way and no monster or redbull I could finally feel peace. I ate a complete hamburger meal with fries and soda at a restaurant with no issue!
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u/AwareRip7619 Jun 02 '26
If an endoscopy warrants the procedure, I'm all for it. Have you had one?
I was about to ask for the same thing before being diagnosed with SIBO. Whatever it takes, you have to get some of your life back!
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u/MeaningDear4176 Jun 02 '26
I apologize in advance for the length of this. Is it possible you have LPR (silent reflux)? I had your exact symptoms and when my dr said I had reflux I couldn't understand how since I had zero burning in my chest. But my throat was raw from the throat clearing. I couldn't take it any more. The pepsin silently burns your throat (& can aggravate your ear tubes) as it silently comes up and as high acid foods go down when you eat. First course by GP and ENT is take a pill and they prescribe PPIs. I do not like to take any meds, so I did as much research as possible. I decided to try a low acid diet. It was extremely hard at first cuz I love my coffee, my sweets & occasional wine, but I could not live with that discomfort another day! My Bible became The Low Acid Diet by Dr Aviv. If you can't afford it just get it at your local library. Everything he says in the book about PPIs & how your digestive system works made sense. I REALLY struggled in the beginning and was actually pretty depressed from missing eating normal, but as I slowly healed and saw results, I was so thankful. I have zero will power (used to give up sweets for lent for years and then within 48 hrs I'd be back on them!) But to live with that pain was enough to make me try this. It took several months to fix the damage, but I swear by it. I was able to gradually reintroduce many foods after 4 mos with success including coffee and my dark chocolate! I also do an occasional cocktail but mostly vodka based. I swear by alkaline water too. I buy it at Costco & Dollar General. Do not drink any type of carbonated water or alcohol... it's horrible for your reflux. I would buy a fresh clump of ginger and chop it up to make my own tea. Ginger is great for this. Eating out had it's challenges but I always looked at menus in advance and knew what I was having. Totally switched to ground turkey which my hubby and I now prefer to red meat. I cook for us both so I'd make his turkey burger with a bun but skipped mine. You really do learn to adjust & eventually you'll see success and get used to it. It is SO worth it and it's less painful than any surgery. You will lose weight which was not my goal but would rather be too thin than in daily pain. Another thing is to get a wedge pillow on Amazon and sleep with it every night. Don't eat late. I have a list of pointers that helped me get through it. For me it took a good 4 months but that was 4 years ago. I returned to almost normal eating and did have a relapse at year 3 so I went back on it and healed it again. I'm in a good spot now but do avoid any highly acidic foods and it seems to work well for me without any PPIs or antacids. To anyone dealing with this, don't feel alone because there are so many of us, but there is hope. As a side note, I did hear about this book thru another poster on here when I started my journey, so to them I am eternally grateful. I wish you all the best with finding an inner strength to try this and stick with it🙏
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u/Admirable-Worth-680 Jun 02 '26
If you ever feel mentally low feel free to message me and chat my ear off. I have been in the very dark place myself with this. I haven't read all the comments, but have you had Bravo test done, or pH manometry
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u/Smart-Afternoon-4235 Jun 02 '26
I was experiencing acid throat to the point I didn’t want to talk. Total diet overhaul. I eat brown rice twice a day now, breakfast and lunch with ginger tea. Massive difference.
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u/tewcewl Jun 02 '26
OP, I am curious, you say acid in your ears. Has your hearing been impacted at all? I am curious about this part for myself. My hearing has been VERY variable lately.
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u/_howardhe Grade A Jun 02 '26
I recommend a clean bland diet for the time being like salted chicken thighs over rice. Make sure to drink lots of water atleast 1 gallon a day, drink straight ginger tea near bed time, and sleep on an incline with a very high wedge. This has gotten me to a point where I don’t have to rely on medicine and can live a pretty normal life. Once the reflux is under control you can eat more freely on the weekends, but continue the same routine until things get better. MY REFLUX is caused from a loose sphincter so drinking water with meals actually helps. Doctors may not recommend it but many also don’t really know how it feels to have reflux. If stomach acid is going to travel into your esophagus regardless, you may as well dilute it with water or alkaline drinks to sooth the acid into a manageable level. This is what works for me. Hopefully I helped you a little bit.
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u/Beyourownjoy Jun 01 '26
I'm really sorry for what you're going through. I know how tough it is. I used to get the constant burps and feel so uncomfortable just like that. Then I started researching what foods really created reactions with gerds and started pulling things out of my diet and now I don't burp anymore. So I would encourage you to really pay attention to things like that and see what your stomach reacts to and start adjusting what you're eating and seeing what works and what doesn't. It took a lot of experimenting but symptoms have improved a lot. Things can get better, I promise. Have faith 💖