How is it that a person can still have reflux while on twice daily PPIs and following all of the rig

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KatherineG
Regular Member


Date Joined Jun 2011
Total Posts : 96
   Posted 6/30/2011 1:11 PM (GMT -6)   
How is it that a person can still have reflux while on twice daily PPIs and following all of the rigid rules?
 
Yes, I'm venting...but seriously, isn't amazing?! I'm sure there are many others out there experiencing this!

Jeronimo
Regular Member


Date Joined Apr 2011
Total Posts : 76
   Posted 6/30/2011 2:42 PM (GMT -6)   
Im on 2 PPIs a day aswell, I try and eat what I can tolerate but still...I get LPRD.

GERD and LPRD are two diseases that dont have an exact explanation to its cause. They know that the LES gets weak, but why? They dont know. Until they discover the root cause for the weakening of the LES they wont have a perfect solution.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/30/2011 2:55 PM (GMT -6)   
Using PPIs on a severely weakened LES is like trying to put out a barn fire with a water hose. You'll make some headway, but it's not going to get it under control. :/
Joy

sunbeam48
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Date Joined Jun 2011
Total Posts : 795
   Posted 6/30/2011 6:24 PM (GMT -6)   
WebMD says that PPI's help only 60-80% of GERD cases.  My primary doubled my dose, still nothing.  Now I will see a gastroenterologist next week.  I stopped taking the PPI after over 2 months, but my primary thought I should continue.  I've just been taking Zantec for the past month, and the rebound heartburn seems to be lessening.

sewfun
Regular Member


Date Joined May 2011
Total Posts : 146
   Posted 6/30/2011 6:42 PM (GMT -6)   
KatherineG

I took 4 different PPI's before we found one that worked just a little. Because it worked somewhat I stuck it out with OTC antacids throughout the day, and after about 2 weeks it started working better. I also take 2 PPI's a day and still need some additional OTC antacid to supplement if I am not very careful what I eat. Have you considered switching your PPI if it's not working? The new GI doc I have felt that something else had to be wrong for me to not be getting more relief from the PPI's. He found that I also have a slow emptying stomach that was really aggravating the GERD and gastritis. So I really do have to be careful what and how much I eat.

I hope you get some relief soon!

Sewfun

KatherineG
Regular Member


Date Joined Jun 2011
Total Posts : 96
   Posted 6/30/2011 8:32 PM (GMT -6)   
Thanks for all of the comments! I have my 1st GI appt. tomorrow.  It is just the initial talk but I am going to see what I can get scheduled for tests.  I'm glad my PCP gave me the referral.  I really believe I have LPR vs. GERD. This is because I have had all of the symptoms of LPR, no need for me to list, I know you all now what they are.
 
Joy - your comment was great, I have seen you called the GERD Yoda, I believe it to be true :o)
 
I really appreciate all of the support and info. I am getting from this Forum.  As I learn more, hopefully I'll be able to share some ideas, although it seems anyone with this disease has tried it all.  If I treat "as needed" with Gaviscon or Tums or Zantac in addition to the PPI, I have better control of the acid but I have to admit, I just feel like that is a lot of meds. 
 
Tried DGL, not sure if it helped, but I found it made me extra gassy, bizarre.  Honey seems to ease my throat so I'm using honey daily now.  I just miss eating more than a cup of food at a time.  I shouldn't be complaining so early on, this has been going on for quite a few months but I have a feeling I have a ways to go. 
 
Thanks again and I hope you all find relief soon :o)

kyheart
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Date Joined Apr 2011
Total Posts : 515
   Posted 6/30/2011 9:08 PM (GMT -6)   
Katherine
I saw your post and thought I would comment on your question... I was on 80mg of Nexium a day for a year and 1/2 before I finally said "I can't take it anymore..."..40mg in the morning and 40 mg at night. It all started with 20mg of Omeprazol(sp?) and after several years and changes in dosage and in medication brand.. it led to 80mg of the little purple pill. With all of the meds it helped for a while because they all kept getting stronger.. I did everything the doctors told me and I had no relief until I had the Nissen Fundoplication. The reflux is gone.. that's right no GERD.. plus my asthma symptoms are gone and I can sleep on my back for the first time in 9 years.. Yep I am a happy camper...
I hope you find the answers to your issues.. stay in touch and let us know how you are doing...

Neptunian808
Regular Member


Date Joined Dec 2010
Total Posts : 86
   Posted 7/1/2011 9:54 AM (GMT -6)   
a dr sent me this:

"Proton pump inhibitors such as Nexium, increase the pH of the refluxate, but do not stop reflux events from occurring. It is now known that certain bile acids are in fact more injurious at higher pH and we have shown that pepsin cause laryngeal cell damage independent of the pH of the refluxate. Furthermore, several groups have used impedance testing to show symptom association with non and weak acid reflux events. So I disagree that reflux may not be causing refractory symptoms on PPI therapy."

that's why we can have symptoms despite taking ppi's, i wish all doctors knew this.

KatherineG
Regular Member


Date Joined Jun 2011
Total Posts : 96
   Posted 7/1/2011 9:54 AM (GMT -6)   
kyheart,
 
Thanks for sharing your story.  I'm happy to hear you are in such a better place after your surgery, I've heard the surgery can go both ways.
 
I'm still early in the investigative process, seeing a specialist for the 1st time today, my PCP referred me, as the PPIs are minimizing my issues but not enough where I can eat much of anything, empty stomach feels pretty good but can't be empty all day, I'm hungry! :o)
 
Thanks, again.
 
KatherineG

sunbeam48
Veteran Member


Date Joined Jun 2011
Total Posts : 795
   Posted 7/2/2011 7:27 AM (GMT -6)   
"I disagree that reflux may not be causing refractory symptoms on PPI therapy."

I THINK i understand this statement: the bottom line is that PPI's done't prevent reflux in many of us, right? Plus I already have osteopenia and severe lumbar arthritis with stenosis, so I can't afford the calcium loss that occurs with this type of drug.

sewfun
Regular Member


Date Joined May 2011
Total Posts : 146
   Posted 7/2/2011 9:17 AM (GMT -6)   
Neptunian808 said...


"Proton pump inhibitors such as Nexium, increase the pH of the refluxate, but do not stop reflux events from occurring. It is now known that certain bile acids are in fact more injurious at higher pH and we have shown that pepsin cause laryngeal cell damage independent of the pH of the refluxate.


I'm not sure, but this may be what is happening to me. I have the HB pretty well under control. I use to reflux during the day w/o HB, but that has stopped unless I get too much in my tummy. But at night I can tell that there is refluxing still going on. I can actually hear and feel it. I have been taking Carafate at night, but I think all the refluxing is washing it away pretty quickly. Since there is no heartburn it does not wake me up. My GI put me on Reglan because he thought that would help empty my stomach and end the nighttime refluxing. The Reglan didn't stop it, but did slow it down. It also helped that he told me not to even drink 2 hours before bed. Nothing has stopped it completely though. My bed is raised 7 inches as well. ?Question? Am I having silent reflux? I won't see my doc until 25th of July. I've started taking the Carafate mid-evening and taking Gaviscon at bedtime to block the reflux at least for a few hours. I am better than I was a month ago, but worry about making a complete recovery with the nightly refluxing. rolleyes My throat doesn't generally feel sore, but some things I swallow there will be a burning sensation as well. Also, this is a new symptom, the refluxing w/o HB. I didn't have this to the best of my knowledge in April when I was first diagnosed with GERD and gastritis. Then I didn't know I had gastritis either until my PCP pushed on my stomach. smhair

Thanks!

Hope all have a great weekend.

Sewfun

Post Edited (sewfun) : 7/2/2011 8:21:48 AM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/2/2011 9:22 PM (GMT -6)   
Yes you can reflux without the burning.
My voice was hoarse and I was coughing a lot, before they deterimine it was reflux causing it.
Joy

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 7/3/2011 9:03 AM (GMT -6)   
Same here...the worsening of my asthma was the first clue the doctor had that I was getting reflux. I'd get occasional mild heartburn, but nothing to get upset about. It was the atypical, asthma condition and silent GERD that sent me to the surgery.
Denise

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5029
   Posted 7/3/2011 1:26 PM (GMT -6)   
Katherine -
I don't know what "rigid rules" you are referring to. I don't know of any. What you need to do for reflux depends on what's causing it.

Do you have a large or paraesophageal hiatal hernia? Do you have identified swallowing problems like nutcracker esophagus? Do you maybe have food triggers like specific food intolerances/sensitivities? All these need to be treat4ed very differently.

Your doctor should be giving you various tests to rule out the various physical causes of reflux. You can keep a food journal to find out if you have any food or drink or medicine triggers. These tests all take time - months at best!

It took me two years and the help of an allergist to figure out I am sensitive to sulfites, get off them and cut my reflux to near zero, until a bad wreck left me with a giant hernia that required surgery. I still have to avoid my trigger foods!
Alcie
 
 

sewfun
Regular Member


Date Joined May 2011
Total Posts : 146
   Posted 7/3/2011 5:04 PM (GMT -6)   
Joy and Denise,

Thanks for your replies. If I'm understanding correctly, the PPI's don't really even address this type of reflux. The last GI I had did say that if I didn't get better with the PPI's I would be facing surgery. I had hoped the new GI was on to something with the gastroparesis diagnosis causing my problems. Even with the Reglan and the eating/drinking schedule the doc has me on is not stopping the nighttime reflux. Last night I woke up 2 hours after taking the Gaviscon and I was already refluxing.shocked Really thought it would last longer than that. I can literally hear and feel it. When I told my current GI that I could hear gurgling in my throat he sort of seemed perplexed. I'm really looking forward to my next appt on the 25th. More testing I'm sure. rolleyes

Hope ya'll have a great 4th! yeah

Sewfun

CA poppy
New Member


Date Joined Jul 2011
Total Posts : 1
   Posted 7/4/2011 5:32 PM (GMT -6)   
KatherineG -

I see you tried DGL with no luck. Have you thought about trying digestive enzymes?

I had GERD with pain so bad I could hardly MOVE until I tried DGL and digestive enzymes. I had tried everything from Zantac to ACV to honey - all with no results. It was truly a miracle for me.

Deb

KatherineG
Regular Member


Date Joined Jun 2011
Total Posts : 96
   Posted 7/5/2011 2:11 PM (GMT -6)   
Hi Alcie,
 
I guess by rigid I meant all of the stuff I have to completely avoid right now i.e. alcohol, chocolate, spices, dairy products, tomato, anything that is not relatively plain, soft and very low in fat.  My diet lately is mostly well chewed bananas, well chewed apples, well chewed plain chicken and some types of plain veggies, watermelon seems to be ok, some softer crackers if well chewed, apple juice, etc. and extremely, extremely small portions.
 
I was never a big junk food person or big drinker but I still find it hard to be on such a limited diet at the moment and find I'm hungery a lot of the time.  Plus, I still don't feel that good. I realize I'm not nearly the only one as this forum is filled with people who have uncomfortable GERD, LPR, delayed stomach emptying, etc. I'm sorry anyone has to go through this but it is nice to have a place to vent, show support and get ideas.
 
I have my 1st endoscopy tomorrow.  We'll see where it goes from there.
 
I'm on a twice daily PPI which seems to have cut down some of the problems I was having but I think I have a long road ahead of me. I met with a specialist last week and initial diagnisis is LPR. 
 
I've been sleeping on  a raised bed too.
 
I think you are correct about possible allergies.  I'm happy to hear you had found your main trigger but sorry to hear about your accident.
 
Thanks,
 
KatherineG

jodibee
New Member


Date Joined May 2011
Total Posts : 7
   Posted 7/5/2011 2:18 PM (GMT -6)   
I was told that the PPI's dont work if u have bile reflux too which i was tested for and told it was one of the reasons that surgery would be necessary, i hope that may help for when u are getting tests done.

KatherineG
Regular Member


Date Joined Jun 2011
Total Posts : 96
   Posted 7/5/2011 2:19 PM (GMT -6)   
Thanks, jodibee.

jasmine8
Regular Member


Date Joined Jan 2011
Total Posts : 69
   Posted 7/6/2011 11:17 PM (GMT -6)   
My doctor called the reflux you get with PPIs NERD: Non-acidic esophageal reflux disease. I thought that was funny so i'd share

jasmine8
Regular Member


Date Joined Jan 2011
Total Posts : 69
   Posted 7/6/2011 11:48 PM (GMT -6)   
sorry I think i got the acronym wrong NOn-erosive reflux disease
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