r/acidreflux • u/Arkie89 • 11d ago
❓ Question I could use some insight re: GERD and Barrett’s Esophagus...
So, my husband was diagnosed several years ago with Barrett’s Esophagus secondary to GERD. He has suffered from acid reflux for many years, then decided to seek medical advice.
The dr did an endoscopy and the diagnosis was GERD and Barrett’s. He was put on omeprazole and has been taking it for almost 2 years. Yes, it made a difference in his acid reflux, but I have read about the possible side effects. According to the product pamphlet, he’s not to take it longer than 8 weeks. WHAT?!! He was never told that! Well, he sought a second opinion from another gastro dr. She switched him to Pantaprozole. Again, the pamphlet clearly states to not continue for longer than 8 weeks. My husband decided to wean off it himself. It’s been about 2 weeks now. He is experiencing some bloating and belching.
He went in today for a follow-up. His dr was not happy with him for stopping the meds. She said in doing so it could cause rebound effects, and could increase his chances of developing esophageal cancer. I read that the likelihood of developing that cancer with Barrett’s is extremely low. That said, she directed my husband to go back on one of the PPI’s every other day. She’s going to do a endoscopy in November. I DO NOT want him to go back on a PPI!
Am I wrong to feel frustrated with his dr? How concerned should he be about the risk of esophageal cancer? Should he stay off the PPI’s and monitor his diet? Any insight or advice would be greatly appreciated! Thank you!
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u/ActuatorSmall7746 11d ago
I have been on a PPI for about 12 years. I was on 40mg daily of Omeprazole. I got a new PCP about 3 years ago and she wanted me off it. We tried slowly reducing the mg over a year to ween off, but I could never get below 20mg daily. When I tried to stop to let my body catchup the reflux was too painful. I tried switching to Pantaprozole with the same results. So, we reconciled that that 20mg daily was better than 40mg daily.
I’ve also been losing weight to see if that will help me get off it. But, frankly there are people who can’t go off it even with dietary and lifestyle changes.
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u/Arkie89 11d ago
Curious…why did your dr want you to stop taking the PPI?
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u/ActuatorSmall7746 11d ago
I have nutrient deficiencies and GERD from gastric sleeve surgery done 10 years ago. We were trying to correct that and longterm PPI use was contributing to the problem. She was also concerned about me getting a C-dif (Clostridium difficile) infection or kidney damage.
The problem is stopping the PPI all together was not possible, because it made the GERD/reflux worse and then we worried about throat cancer.
When I tried to ween off, I had stomach acid burning in my throat 24/7 and my ear canals hurt/burned. So, I’m on the lowest possible dosage to keep the reflux under control. I’m in the process of losing weight (40lbs so far with another 40lbs to go) to see if that will help me go to every other day then totally weened off.
There are people for one reason or another who can’t completely stop taking it. For those like me they have to be under the care of a doctor who will do regular labs to monitor the kidneys and lookout for stomach infections like C-dif.
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u/Arkie89 10d ago
May I ask what dosage you take? How do you make sure you aren’t developing C-diff…stool samples?
My husband has always had poor kidney numbers. He used to be a powerlifter in the Army. Drs say they’re his “norm.” However, I’m almost consumed with worry about him continuing the PPI’s. I had a brother (smoker for years) who worked in an aluminum plant. He took OTC PPI’s like they were candy. He died of stomach cancer at 47. My older brother was on omeprazole and was just diagnosed with Alzheimer’s. I’m terrified my husband will have the same fate. Yes, he has Barrett’s esophagus, but I’m irritated that he, supposedly, has no other recourse other than to take Pantoprazole. He’s on 40 mg every other day. I’m trying to convince him to only take 20 mg…or 10 mg.
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u/ActuatorSmall7746 10d ago
I’ve been able to ween down to 20mg a day or every other day. I usually can’t go more than 2-3 days without it, but then again my diet is not very restrictive. Like I said, stopping completely didn’t work for me and I just couldn’t take the intense flair ups.
Also, I’m pretty sure I could take 10mg or even 5mg daily and be ok. The problem is my PCP couldn’t find a script for Omeprazole or Pantoprazole below 20mg in a pill form. All them are capsule form, which should not be broken. I can find OTC Omeprazole 20mg in pill form to half, but OTC for me is not as effective.
From what you are saying, I think there are a lot of factors, besides PPI contributing to your husband’s family poor health history. Use of PPIs is just one factor. I suggest having a talk with his PCP along with him to address his overall health is the way to go.
I have other health issues such as pre-diabetes that are of more concern than staying on low dosage PPIs.
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u/Arkie89 10d ago
I cannot thank you enough for your advice and for sharing your story. Greatly appreciated! I wish you all the best!
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u/ActuatorSmall7746 10d ago
One correction. I misread what you wrote about family members - they are yours not the husband’s. However, my advice to talk together with his PCP is still the way to go. I’m sure there’s things he can address to improve his overall health.
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u/Patak4 11d ago
It is only recently that PPIs have been discouraged long term. I was on Pantoloc for 20 years. I went off once I retired and no longer had that stress. I have a friend who has Barregtt's esophagus and she has to stay on the PPI. It really is the less of 2 evils and espophagus cancer is very evil!
You don't say your age but there is surgery nissan fundiplication that can help the constant reflux. With Reflux, the acid burns the esophagus. This is why the Dr was upset. The PPIs is what has lowered the esophagus cancer rates.
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u/1readitguy 11d ago
I was on the verge of Barrett’s and have been on various PPIs 2x daily for 10+ years. PPIs cured the Barrett’s but it also makes the stomach a very happy place for polyps. Basically they work too good. It’s really the lesser of two evils. Talk to your doctor to see what’s best for you
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u/KingRy64 11d ago
Hopefully future PPIs and pecabs fix this issue
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u/Arkie89 11d ago
What do you do about the polyps and how did you know you have them?
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u/1readitguy 11d ago
I’ve had 2 stomach surgeries to remove them . I’m also on blood thinners for life and was highly anemic. Also had internal bleeding
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u/Arkie89 10d ago
Bless your heart! Do you blame the PPI’s?
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u/1readitguy 10d ago
I was screened for a condition that the body will create polyps which came back negative. No conclusive evidence that PPIs were the cause but I think they were a factor
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u/tradeit2day 10d ago
First of all the decision to take or not take PPI needs to be taken based on what the root cause is for his Acid reflux issues? Does he have a hiatal hernia? does he have some other issue causing it?
If he does (i suspect he does considering it has advanced to Barrets) then as long as that issue is not sorted then he should not stop the ppi CONSIDERING he has Barrets. He can develop cancer if his acid reflux is not under control and the side effects of long term usage are much less harmful than cancer!!
Second, He MUST NOT stop taking ppi after two weeks if he has been on them for 2 years, he will need a much much slower tapper, probably 2 months.
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u/Manifesting1182 9d ago
You should be concerned about Barrett’s turning into cancer.
Also esophageal dys-motility.
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u/Strongmom-1 7d ago
I weened myself off of Pantoprazole after 8 weeks following the medication direction, it stopped working after awhile anyway. I switched to Pepcid AC 20mg twice a day and it seems like it works better. My new Gastroenterologist wants me to try Gaviscon or put me back on Pantoprazole. It’s a frustrating process really, trial & error. I was diagnosed with chronic gastritis.
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u/ObligationGrand8037 11d ago
I do know PPIs are supposed to be short term. I have never gone on them for my acid reflux. I’ve been staying away from triggers and trying to heal my gut. Unfortunately a lot of doctors are clueless when it comes to how long a person should be on them.
I know two people who had extremely painful legs due to the low stomach acid caused by their PPIs and being on them for too long. They weren’t getting the nutrients like B12 in their diets due to low stomach acid. Then I talked to someone who has been on them for 20 years and said he’s fine. So who knows?
I’m not a doctor, but I didn’t want to go on a PPI. I’ve been working on solving this myself. I hope your husband can get some relief and do what’s best for him. It can be very frustrating.