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PPi's don't seem to help

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Posted 6/4/2013 11:16 PM (GMT 0)
I have just been diagnosed with Barrett's. Also gastritis of the stomach. PPI's don't seem to help much. Manometry test says i have a weak LES and a weak esophagus. Symptoms include burning of throat and mouth, lump in throat, regurgitating everything (inc water), cheat pain and pressure. the burning happens pretty much all the time.

getting 24 hour PH and gastrin level checked too.

any insight would be great.

xmolly
Posted 6/5/2013 4:11 AM (GMT 0)
Hi Molly,

You sound similar to me. I just had the Linx surgery 11 days ago and haven't really noticed too much yet because it's hard to disentangle the feelings of irritation and reflux. I was on PPIs since I was 17, I'm 31 now. In the last 5 years, they weren't helping me much either anymore. I was put on every single PPI available. Do you have LPR? I often wonder if I have that. My throat burns almost all the time and I regurgitate everything also. I had the 24 PH test done on PPIs and it showed that I was still have acid and non-acid reflux. I also have gastritis that comes and goes.

If there anything that currently helps you? Sometimes Gaviscon helps, but not very much. I'm also drinking aloe vera juice, but I'm not sure that is doing much either.

Crystal
Posted 6/5/2013 4:31 AM (GMT 0)
Molly-- I also have had success with Gaviscon. It works exceptionally well when you're lying down and sleeping. I also have a weak LES and later this summer will receive the Nissen Fundoplication. My guess is that you'll need some type of surgical procedure given your current symptoms. People forget that PPI's are only effective to a certain point. If your LES is weak, all the PPI's in the can't close or tighten a weak LES. PPI's have controlled my heartburn, but it is the nocturnal regurgitation and aspiration of gastric content that has landed me in the ER and necessitated my surgery. The good news for you is that your condition is treatable. Review options with your doctor-- and get that condition fixed. Good luck to you. I hope you find relief.
Posted 6/5/2013 10:20 AM (GMT 0)
Molly,

PPI's made me feel worse, although they did seem to help years ago. Carafate (liquid is the best) will help with the gastritis. I take aloe vera juice and manuka honey in hopes of healing some the damage from reflux.

Posted 6/6/2013 6:35 PM (GMT 0)
OK update.

My UES and esoph are weak. but my LES has normal pressure but is just not functioning properly. How can that be that I am still have major throat burn? and my 24 PH test showed only 2 reflux eps during the day and 6 episodes when laying down. That doesnt seem like a lot. But every morning within and hour of waking, my throat burn starts. i do have LPR and GERD and Barrett's. And i am 31! I just don't get why I have all this if my LES has normal pressure! I have no Small intestinal bacteria or H pylori. Sort of taking every test to figure this out.

The 24hours when I couldnt take any ppi or zantac was actually not that bad acid/throat burn wise. Of course when I have to prove that I have reflux, my symptoms die down. But I wonder if it was bc i was off of the meds. I dont really see how all this fits together.

My dr now has me on a a 40mg PPI in the am and 2 zantacs spread throughout the day with a medicine that is supposed to help speed up the slow motility of my esoph. And a restrictied high PH low/acid diet too. And eventually hopes to ween me off once my esoph and UES heal.

Seems like a mess of confusing info.

Any thoughts?
xmolly
Posted 6/7/2013 10:57 AM (GMT 0)
All I can say is you are not alone, alot of us here can't seem to figure out cause and effect. Hang in there!
Posted 6/7/2013 5:09 PM (GMT 0)
GERD is tricky, the best treatment has been diet changes. But even that sometimes does not help. Some days I feel ok, the next day not. Without any changes. I don't get it either
Posted 6/7/2013 8:36 PM (GMT 0)
My diet is pristine. No dairy, gluten or cane sugar for over 3 months. Very active, well i was very active until this flared up so bad. Ok so now bc of the severe burning in my throat (and sometimes tongue and even lips!) my DR is prescribing a drug called neurontin to help with neurogenic pain caused my by post viral vagal neuropathy which is in turn causing my GI tract to be all messed up. PVVN is when your vagas nerve gets damaged by a virus that you get.

so many meds! i will let you all know how I am doing in a few days. I wish PPI-Less was still on here! He had some great insight!

xmolly
Posted 6/8/2013 12:52 AM (GMT 0)
Also, since my LES pressure is normal but I have weak motility in my esoph does that mean I have no surgery options?

xmolly
Posted 6/10/2013 5:34 PM (GMT 0)
Hi Molly,
your story reminds me so much of what I'm going through - only instead of laryngeal problems I have chronic sinusitis caused by reflux and a constant burning feeling in my larynx. PPIs have little effect. I'm currently waiting for all my test results, and - interpreting his previous remarks... - I think my doctor will suggest a therapy similar to yours (avoiding cane sugar, treating post viral vagal neuropathy). That's why I'd be extremely interested to hear how it works for you and look forward to your updates!!! I wish you the very best!!!
Orchid
Posted 6/11/2013 8:19 PM (GMT 0)
Hi I wanted to let you know of my successful treatment while trying to get off ppi's. (I had been on for 1 year.) Acupuncture and Chinese healing herbs. I must admit I was so skeptical at first but now it's been 3 weeks since I took my last ppi's and as of yesterday I can honestly say I am symptom free. During the time I was weaning off the ppi's I was pretty much miserable. I had terrific pain in my stomach and like most of you even ice water made me have acid reflux and sour acid stomach!!! I think my system was over compensating with stomach acid since I was so used to having the medication. But after only 3 acupuncture treatments and 2 weeks of herbal therapy, I feel fantastic. The reason I wanted to not take ppi's any longer is that after much research I discovered that I don't think my body was absorbing nutrition from my food and especially calcium while on them. At least not as it should. Besides the acupuncture treatment, I also visited with a Ayurvedic therapist and she gave me some wonderful insight on foods to avoid and foods to eat. Together with the acupuncturist I feel like my old self again. Another key thing to remember is to only eat very small amounts of food at a setting. I hope this information will help those who are suffering. Oh one more thing both of my therapist agree that the eastern medicine is not always the sole answer. There is sometimes a need for western medicine and they both work with medical drs as well. Good luck
Posted 6/16/2013 3:59 AM (GMT 0)
Orchid,

I have been diagnosed with PVVN too. I am on Zantac, Neurontin and an esophageal motility drug. And a low acid diet. Week two on the meds and things are better.

Xanax is the thing that really kicks the pain out if you have a flare up. It is a lifesaver.

I don't like being on drugs but hey, you gotta use them sometimes. I tried acupuncture and herbs and it did not work. Just go worse.

The plan is to get all the inflammation down and then ween off the drugs slowly.

Also lots of Vitamin D. And get a personal steamer for your voice. It soothes it and feels soooooo good.

x
Posted 6/16/2013 4:06 AM (GMT 0)
Orchid-

Also 5 or 6 small meals, sleep on an incline, chew chew chew, go to bed FOUR hours after eating... yes four. Get acquainted with high PH/low acid foods. ONLY WATER. Raw honey right down the throat. Biotene helps with a hurty tongue. NO MINT. not even ricolas.

What tests did you have done to rule out a structural problem (gastrin levels, 24 PH test, weak LES, low ESOPH motilty or weak UES)

x
Posted 6/21/2013 5:47 PM (GMT 0)
Molly: thanks for your reply! Yes, I guess sometimes there is no other way but to take meds - it may sound scary in the beginning, but if they help...!

I finally received my test results (ph/impendance-testing, manometry), but still had no chance to talk to my doctor and find out what therapy he suggests. It turned out my oesophagus motility and LES pressure are normal. Ph-testing showed only a view reflux episodes, but an unusually high number of gas reflux (during the testing I felt I almost had no symptoms at all - in spite of all the sweets, cake and other "sins" I was told to commit). The burning feeling (which I almost didn't feel during the testing) was not related to (gas) reflux episodes. Whatever... I'm desperately waiting for the appointment with my doctor in order to find out what to do now... 

I hope your situation has further improved in the meantime!?

Nancy: I think it's great that chinese medicine helped you, I tried it too, but it had no real effect on me. But I guess every situation is different and everyone just has to figure out what treatment works best.

Best of luck to you all,

Orchid

Posted 6/21/2013 6:54 PM (GMT 0)
Nancy - You said - The reason I wanted to not take ppi's any longer is that after much research I discovered that I don't think my body was absorbing nutrition from my food and especially calcium while on them.

 

What made you think that your body was not absorbing nutrition ? I am thinking it is happening to me too and wanted to know what your symptoms or thoughts were. I have been on Pantoprozole 40mx 2x a day for a month now and slowly weaning off.

 

Posted 6/21/2013 7:56 PM (GMT 0)
fight-gerd, ask your doctor to order blood test They can tell if your are anemic (ferritin), low B12, low magnesium potassium calcium etc. it will show up on one blood test. It is very helpful to know this. If you are eating very nutritious foods with lots of green, red, yellow vegetables and the test results are lowered then most likely due to PPi.
Posted 6/21/2013 10:52 PM (GMT 0)
I think the malabsorption on ppis is overplayed, by all means get tested but dont put yourself through misery for the sake of getting more 'nutrients'.

I found ginger supplements and carafate in the middle of the nigt did wonders for my gastritis.
Posted 7/15/2013 9:51 PM (GMT 0)
Orchid,
Any news? I am suffering still with a burning in the back of my throat that only is calmed down by xanax oddly enough. and sometimes that doesnt do the trick either.

I had to go off of the Nuerontin bc it was causing me a lot of mouth pain. I seem to have odd side effects...still on 4 zantacs a day for acid supression.

I am trying a high protein/very low carb diet to try to see if that will help if there is any bad bugs in my gut contributing to this.

it's really unbearable at times. like I ate hot cinnamon gum but without the cinnamon flavor. I feel like a fire breathing dragon!
x
Posted 7/17/2013 2:29 AM (GMT 0)
I was recently diagnosed with Barrets and often have chest pain at base of my esophagus about 30 min after eating. I tried Prilosec for about two weeks and starting getting bad diarrhea and headaches. Had to come off them. Instead I will go on a low carb, alkiline, low fat diet for two weeks to see if that helps.

Greg
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