PPI's cause more harm than good...

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Sabres978
Regular Member


Date Joined Jan 2006
Total Posts : 26
   Posted 1/31/2006 3:14 PM (GMT -6)   
Hello everyone!  I appreciate this forum and hope you all find relief.  I was hoping someone out there would find an interest in my story.
 
I was a perfectly healthy 27 year old man with no history of any health problems whatsoever.  For a long time I would experience occasional burping after eating a large meal.  It was never anything that bothered me; no serious pain, and it would generally go away quickly.  Back in early December my symptoms started with an uncontrollable burping, tremendous gas, difficulty eating food, shakes but no fever.  At the initial onset, I assumed I was coming down with a stomach virus or maybe food poisoning, but did not vomit.  After a trip to the emergency room, I visited my family doctor who determined that my white count meant I had some kind of infection.  There were no tests to determine where the infection was, yet they prescribed Cipro and gave me samples of Aciphex at 20mg--this was the biggest mistake.  After a few days on antibiotics, I still wasn't feeling noticeably better and went to a gastroenterologist who gave me samples of 40mg Nexium.  I took the Nexium for a few days, started to feel better, and decided to go off it.  Meanwhile, my GI wanted to do some more tests...we did an ultrasound of the abdomen which was normal.
 
After about a week off the Nexium, my symptoms came back worse than before.  Abdominal discomfort, pain in the stomach, uncontrollable burping.  Back to the GI again, who decided the next course of action was Upper GI Series.  The test showed nothing abnormal structurally but did show "acid reflux."  How they can diagnose acid reflux on that test, I'm not quite sure.  In any case, now he prescribed Nexium and told me to stick with the regiment.  In this time, I took a few trips abroad and made it through even though I was in a good deal of pain here and there.  I noticed a sense with the  Nexium of being "kicked in the stomach."  This is a sensation that I had never experienced before, but everyone I asked assumed this could not be a side effect.  Meanwhile, when I returned from my trip, I had run out of my Nexium samples and, sure enough, after a few days I had the "Nexium Rebound."  This was far worse than what I had experienced before, leaving me completely debilitated.  So back to the GI for some more of the same pills.  We also did a slew of blood test which produced completely normal results, including for the H. Pylori.
 
After another week, I thought I was feeling better on the Nexium and we decided to forego an encoscopy that I scheduled.  Another big mistake!  For the last three weeks or so, my symptoms have gotten progressively worse.  Now I have a whole cycle of symptoms, starting with the "kicked in the stomach" pain after eating, upper abdominal discomfort, chest fullness, non-stop burping at times, pain radiating to the back.  I seem to go through periods every few days of 1) tremendous distress, 2) recovery and 3) normalcy.  The periods of distress have gotten more intense and the periods of normalcy shorter.  Meanwhile, when I go through one of these episodes, it feels like a spasmadic attack in my digestive system.  When this happens I am in a great deal of pain and have difficulty eating.  I have also experienced tremendous anxiety at times, heart racing, etc.  I should also mention that I've followed every dietary guideline (no coffee, alcohol, fried food, etc.) yet to no avail.  My condition has taken over my life and robbed me of any enjoyment--all I get every day are questions about my health, all I can think about is how I'm feeling, and I've had a lot of trouble working.  The answers from my GI:  increase to 80mg of Nexium and add in Zantac and antacids as needed.  There's no way I'm going to oblige with that.
 
In any case, I now have an endoscopy scheduled with a GERD specialist from a well-reputed hospital.  I've read a tremendous amount about these conditions over the last few months, and I can't help but think that the PPI's cause much more damage than good, and as such, I'm going to be courageous and go off Nexium cold turkey.  It seems like all my troubles started as soon as I began taking them.  Doctors prescribe these medications without truly understanding their effects on your general wellbeing.  It's illogical to think that reducing stomach acid will not have other impacts on your ability to digest food or your body's ability to fight bacteria.  The underlying problem might be the LES, and either way, you're going to experience reflux symptoms.  But the PPI's seem to cause more problems, and you're still going to have reflux when the sphincter opens.  I've also read studies about the problem often being caused by too little stomach acid, so perhaps the stomach pain is a result of too little acid (caused by Nexium) putting more pressure on the stomach, whicn then opens the valve and results in reflux nevertheless.  My new GI suggested I try going off the Nexium for 48 hours to see if it reduces the pain.  (I wound up in the emergency room the other day even on Nexium--so what's the difference?)  I think this is a good idea, I will overload on Maalox if I need to and hope for the best.
 
I would appreciate any insights you may have on my symptoms, and my plan to run the gauntlet.  Thanks for taking the time to read this.
 
-Jason

Nal
Regular Member


Date Joined Jan 2006
Total Posts : 410
   Posted 1/31/2006 5:07 PM (GMT -6)   
Hey there!!!
 
Have you read any of my posts that I have put up here recently (under Nal)??  If not, you really, really should.  You and I sound EXACTLY alike!!!!!!!!
 
I have been on PPI's for over 5 years now.  The burning pain in my stomach, intestines, cramping and a few other things did not start till after I started taking PPI's.  GI drs look at you like you are nuts-they just don't seem to get it do they?
 
Do you get burning pain too??  Like in your whole digestive tract??  I can pour antacids into me till I puke but the don't help at all.  I am coming off of my prilosec and would just like to die right about now-the rebound is awful!!
 
My GI understands my concerns and is going to do another endoscope with a ph test.  We'll see what happens.
 
Id love to hear more about your story.  I would never, ever, ever, ever, ever recommend PPI's to ANYONE out there ever again!!!
 
Nancy  (Nal)

Sabres978
Regular Member


Date Joined Jan 2006
Total Posts : 26
   Posted 1/31/2006 5:35 PM (GMT -6)   
Hey Nal,

Thanks for the response. I did indeed read your posts--I'm so glad to see that I'm not alone regarding these drugs.

I haven't had the burning (YET), but just this general sense of atrophy in my entire digestive tract. I also can drink bottles of antacids and they have minimal impact.

Hang in there, I'm sure we'll begin to feel better soon. I know it feels like heroin withdrawal, but it will be worth it.

-Jason

Nal
Regular Member


Date Joined Jan 2006
Total Posts : 410
   Posted 1/31/2006 5:58 PM (GMT -6)   
I never, ever knew that one medication could cause such horrible problems!!  I think getting off of heroine would be easier!  All joking aside, I am ready to do this and quit for good.  Do you get nausea and a terrible sense of fullness too? 
 
Dont be surprised if your endoscope shows gastritis or is normal.  Mine showed gastritis and then i had to ask "How did I get that when the only regular thing I have been on is PPI's??"  Just weird!
 
Nancy

CathyA
Veteran Member


Date Joined Mar 2005
Total Posts : 1543
   Posted 1/31/2006 8:47 PM (GMT -6)   
Hi Sabres,
   Sorry for the problems you're having!  Your symptoms were alot like mine.  But for me, at first, the aciphex was like a miracle drug for me.....it took away all my burping, bloating, pressure, nauea and diarrhea.  But eventually, I just didn't want to be on it anymore....and worried what it was doing to the rest of my body.
   First question for you:  What kinds of food do you eat?  Do you take a good probiotic and eat yogurt?  How are you bowels?  Do you have diarrhea?
   I find it unbelieveable that GI docs aren't really concerned with what we eat....other than caffeine, chocolate, coffee, tomato stuff, etc.   Some of us have real problems with carbohydrates and we just can't digest them properly, and it leads to incredible amounts of gas and pressure.
   I think you need to heal your GI track, and I'm thinking you have to eat very simply for awhile.  Do an internet search on things like  "healthy digestion" and "healing your gut" and similar topics, and you'll find some information that might be useful for you.
   I think you have a "functional" GI problem, which means your intestines just aren't working right, although nothing will show on tests for that. 
   You may have alot of trial and error, before you find what you can and can't eat and what you can and can't do, before you find a way of eating that doesn't put you in this horrible state.
   I hate to say this, but so many conventional doctors only want to prescribe medications and ignore everything else.  I think this is a horrible way to approach the body.   You need to heal your system, and I think you should start that by educating yourself about how bad carbs can be for some of us.  I hope you can find relief soon.  I can so relate.  I slept upright in a chair for 7 months, because I thought my upper chest and neck was going to explode, and I couldn't breath lying down.  I thought I would surely die.   But I didn't, and I'm doing much better now (thanks to calcium.....but that's another story).
   Also, sometimes when I get into a horrible state with my GI tract, I just have to fast for awhile, only drinking liquids, and then slowly reintroducing some other foods.  The fasting seems to help alot.

Sabres978
Regular Member


Date Joined Jan 2006
Total Posts : 26
   Posted 1/31/2006 8:50 PM (GMT -6)   
Yes, I get the terrible sense of fullness also. Today my symptom has felt more like abdominal soreness, as if I did too many situps or something? The symptoms are constantly changing and more and more perplexing. Even when I feel ok on the Nexium, I have a lot of trouble eating full meals. Some days I can only eat a few bites of food at a time, then I eat virtually nothing all day long. When I've been off Nexium, I've gone into what has seemed like shock...then I can't eat at all and feel like I'm going to die.

How did you acquire gastritis when drugs like Nexium are supposed to help heal that? It just makes you wonder. I think a lot of people are in such bad shape when they start on these drugs, that they are not cognizant that what they are experiencing are indeed side effects. The drug companies report very low prevalence of side effects--don't believe that for a second!!! Ask your local pharmacist and you'll get a candid answer on this.

Feel better,
Jason

CathyA
Veteran Member


Date Joined Mar 2005
Total Posts : 1543
   Posted 1/31/2006 9:20 PM (GMT -6)   

Hi again Jason,

   Have you looked into food intolerances?  I think alot of us have a wheat intolerance, even if our tests for celiac disease come up negative.  I think the internet might be a big source of good reading for you on some alternative ideas about healing your gut.  Some stuff is just nonsense, but there are a fair amount of good ideas out there.....that you'll never hear your GI doc talking about.

   I can so relate to some of your symptoms.  I used to have a piece of toast and a drink for breakfast and would blow up like a balloon and my heart would beat like crazy.  There were times when I actually felt pregnant........I could feel my abdominal muscles contracting.  Everything felt tighter than a drum!  I think it's from the gas.  I would also get that sore stomach feeling, and I think that's from all the bloating that happens.  Really......read up on the various sites on the internet about healing the gut, and digestive wellness.  I know you feel like you're dying.....but you'll find your way through.


Nal
Regular Member


Date Joined Jan 2006
Total Posts : 410
   Posted 1/31/2006 10:42 PM (GMT -6)   

Yes gastritis on a double dose of prevacid even at the time-figure that one out!! 

You may very well have food intolerances like Cathy said.  The frustrating part is where did they come from??  If you werent having and stomach pain at all prior to going on an acid blocker, then the only thing that could have caused it is the PPI itself right??  Makes me mad!

Nancy


jbara
Regular Member


Date Joined Jan 2006
Total Posts : 84
   Posted 1/31/2006 10:58 PM (GMT -6)   

Hey everybody.  I have to tell you guys, I practically got chills reading some of your responses to Jason's 'PPI's cause more harm than good' conversation.  I have never joined one of these sites and as you can see, just recently joined HealingWell.  Here's my story... I'll bet you'll all relate, at least with some of my experiences.

First of all, I have been suffering with IBS for over 30 years, and was diagnosed with ulcerative colitis about 3 years ago.  The relevant to "PPIs" part of my story started about 2 years ago... I developed a really bad cough that was finally diagnosed by a pulmonologist as GERD.  No other symptoms... no heartburn, indigestion, etc... just a cough.  Yea, you guessed it... he put me on Nexium.  After a few months on the Nexium, the cough improved greatly, but I developed horrible indigestion with belching that occurred off and on all day, nearly every day, regardless of what I ate.  (Note:  at the time, I made no connection to the Nexium.)  My problem got so bad, I finally went to see a GI who did an endoscopy, which, with the exception of a hiatal hernia that he was not concerned about, was normal.  He then ordered a gastric emptying study, also normal.  A HIDA scan pointed to an abnormal gallbladder, so, at the recommendation of my doc, I had it removed... you guessed it, I still have all my same indigestion/belching problems!  I have tried a miriad of medications, tried stopping meds, i.e., Nexium (although not for long because when I go off I get heartburn so bad I go running back), changing my diet (Fit for Life... mostly fruits, veggies, etc.)... you name it... I think I've tried it.  After doing some research on the internet, I started wondering, like you Jason, if my problem wasn't due to possibly too little bacteria from the PPIs, or maybe bad bacteria or possibly Candida (a type of yeast).  Anyway, I found a lab called Great Smokies Diagnostic Lab that does some unique GI testing for bacteria and yeast, i.e., 'Intestinal Permeability Assessment', 'Comprehensive Diagnostic Stool Analysis' and 'Bacterial Overgrowth of the Small Intestine'... you can read all about these tests at www.gsdl.com I've considered asking my doc to order one or more of these tests, but because he is not a Naturopath (and I think typically that's the kind of doc who would order these types of tests) I doubt he'd know what to do with the results, and I sure as heck wouldn't either.  I'd really like to let a Naturopath take a shot at my health issues because I'm convinced that my problem isn't one crying out for oh yet another medication.  Unfortunately, my insurance doesn't cover Naturopaths, and unfortunately, I'm not independently wealthy.

I'm sorry to have gone on for so long... thanks to those who took the time to read this lengthy message... I may not feel better physically, but emotionally, way better.  Venting can be a beautiful thing!  I look forward to anyone's thoughts on the subject.

 


CathyA
Veteran Member


Date Joined Mar 2005
Total Posts : 1543
   Posted 2/1/2006 5:25 AM (GMT -6)   
Jason,
Something I forgot to mention. All my GI problems started after I was on antibiotics. Every time I'm on them, my GI health deteriorates even more. I also get incredible reflux on them, just after 1 pill. I'm wondering if the antibiotics you took just made everything alot worse. I truly believe that antibiotics can really damage our guts.

jbara.....I'm curious....when you had that cough, were you put on antibiotics?
I cringe whenever I need to be on them, because I know it will take a little more of my GI function away, each time I'm on them......even when I really load up on probiotics.
But I agree with you, that Jason's good bacteria/bad bacteria are probably all out of whack.......as with probably most of us. It's such a delicate balance in there, and I'm sure what we eat, and medications can really mess it all up.

Sabres978
Regular Member


Date Joined Jan 2006
Total Posts : 26
   Posted 2/1/2006 7:55 AM (GMT -6)   
Hi Cathy,

Thank you for the advice! I'll be the first to admit that my diet over the years was not the healthiest. I've tried to increase my intake of fruits and vegetables, reduce the fats in my diet, and totally avoid the irritating substances. I've started on yogurt everyday but no probiotics as of yet. Bowels have remained relatively normal. I'll have to see what the doctor says at the endoscopy, but I think I should look into intestinal issues and food intolerances. Good point also about the antibiotics--seemed to really mess me up after.

Jbara, thanks for sharing your story. You were misdiagnosed in the first place...can't believe that a cough could be construed as GERD? Hopefully you get to try the Naturopath tests, let us know how that turns out.

-Jason

aeis2000
Regular Member


Date Joined Jan 2006
Total Posts : 56
   Posted 2/1/2006 8:34 AM (GMT -6)   
Thanks Sabres978 and everyone else for bringing this up.
I was put on a PPI course when the doctors discovered i had hiatal hernia WITH no reflux.
It's called Pantoloc 40mg for a 2 week supply. I have quit taking them now.

Post Edited (aeis2000) : 2/1/2006 7:39:17 AM (GMT-7)


CathyA
Veteran Member


Date Joined Mar 2005
Total Posts : 1543
   Posted 2/1/2006 9:02 AM (GMT -6)   
Jason,
Just to let you know.....a cough CAN be one of the only signs of GERD. For some people, acid comes up into the throat, especially at night, and can really irritate the throat, and the upper respiratory tract. It actually could have been pretty insightful, to recognize the cough symptoms as reflux. Just thought I'd mention that to you! :)

jbara
Regular Member


Date Joined Jan 2006
Total Posts : 84
   Posted 2/1/2006 11:34 AM (GMT -6)   

Jason, when are you scheduled for your EDG?  I will be very anxious to hear about the results.  I'm so sorry you've had to deal with so much suffering at your young age.  Keep looking for solutions... and trust yourself and your own 'gut' as much or more than you do your doctor(s).  You sound like a very intelligent person, and who cares more about your well being than you?  I think one of the biggest mistakes Americans make with regard to our health is that we entrust our health and well-being into the hands of western medicine doctors that don't learn anything about nutrition and disease prevention in their medical training... only what to do after the problems arise.  And then, unfortunately, too often the treatment is about meds and surgeries, not diet and exercise  I think if we took more responsibility for our health, we'd have a lot less health issues in this country.  I wish when I was your age I had gotten ahold of the book 'Fit for Life'.  I really think if I had read that book 30 years ago and applied the author's recommendations for eating to my life, I likely would not have all the health issues that I now have.  Note:  the book recommends eating mostly fruits and veggies, along with other natural foods and avoiding meat and dairy.  If you like to read, and something tells me you do, I think you'll be fascinated by this book(s).  I learned of Harvey Diamond, the author of Fit for Life, from Anthony Robbins, if you know who that is... tall, good looking motivational speaker.  Anyway, take one of the books for a test drive (he has 4 I think)... it's a loss less painfu to read a book, even if it's boring, than to have something stuck down your throat or up your butt, if you know what I mean.

Anyway, at the risk of sounding a bit contradictory, have you had a gastric emptying study done?  Your problems sound like they might be related to gastroparesis.  Also, has your GI doc suggested the possibility of IBS... antispasmodics might be the solution... your symptoms sound like they might be related to spasms of the GI tract.  Take it for what it's worth... I've been searching for over a year for the solutions to my stomach problems and the answers are still eluding me.  Good luck Jason... I'll look forward to hearing from you again.

Jamie.

 


jbara
Regular Member


Date Joined Jan 2006
Total Posts : 84
   Posted 2/1/2006 11:48 AM (GMT -6)   
Hi CathyA... in answer to your question, yes, I was put on antibiotics for my cough.   It never occurred to me until recently, however, that my chronic stomach problems might have anything to do with bacteria/yeast possibly caused by antibiotic use.  The jury is still out for me as to whether my problems are related to that or the PPIs... or both (or something else).  If only we all had 24 hours a day (- 8 to sleep) to dedicate to finding solutions to our health issues... but who does?
 
Cathy, how is your health now?  I'd love to hear more of your history and experiences... it sounds like you and I think much alike on this issue.  Hope you're feeling well today :-)
 
Jamie

Sabres978
Regular Member


Date Joined Jan 2006
Total Posts : 26
   Posted 2/1/2006 5:37 PM (GMT -6)   
Hi Jamie,

Thank you for the words of advice. I hope you find some solutions and begin to feel better soon. I have to get my hands on the books that you mention!! To answer your question, I'm scheduled for the endoscopy on Monday. I haven't had any tests other than Upper GI and abdomen ultrasound yet. I agree, gastric emptying and tract spasms are possibilities...I'm also experiencing some discomfort in my upper back and shoulder, so I'm wondering if that could be gallbladder related?

It's been one day off the Nexium and I'm feeling much better. No "kicked in the stomach" pain or abdominal soreness today, just a little twinge in my right shoulder and some very minor burping. I'm prepared for the hell of this withdrawal, and I do know it's coming but I'm going to hang in there. My plan is to try some Pepcid if I get really bad. I'll let you know how it goes!!

Jason

jbara
Regular Member


Date Joined Jan 2006
Total Posts : 84
   Posted 2/1/2006 5:45 PM (GMT -6)   
Jason, you should go check out the forum "Quitting Nexium Cold Turkey"... I'll be you'll find it interesting, as I did.

CathyA
Veteran Member


Date Joined Mar 2005
Total Posts : 1543
   Posted 2/1/2006 5:59 PM (GMT -6)   
I've oftened wondered about gall bladder function. I've had 2 ultrasounds for stones, but nobody ever seems to check to see if it's functioning properly, if you don't have stones. I've always wondered if some of us have gall bladders that just put out too much bile, or the wrong kind of stuff.
For me, when my GERD acts up, I always get a pain in my upper left chest. It's just one spot that hurts. I think nerve pathways can make some pains confusing, as to what's causing them.

Sabres978
Regular Member


Date Joined Jan 2006
Total Posts : 26
   Posted 2/2/2006 12:54 PM (GMT -6)   
It's the second day off the Nexium and the withdrawal is starting to kick in. I'm feeling more jumpy than usual, a little off-center, and kind of anxious after eating. All of the pains I attributed to the Nexium (kicked in the stomach, upper abdominal and chest pain) have all disappeared. I popped a Zantac to help with the acid re-admittance, but I'm thinking I may need a tranquilizer.

My plan is to get through a few bad days and have the endoscopy Monday. Then, hopefully to be able to resume work and normal activities next week.

Hope you are all doing better,
Jason

Sabres978
Regular Member


Date Joined Jan 2006
Total Posts : 26
   Posted 2/3/2006 12:56 PM (GMT -6)   
Third day and it's the best I've felt so far. I noticed a little tightness in the chest at breakfast, but that's about it. No other symptoms at all.

CathyA
Veteran Member


Date Joined Mar 2005
Total Posts : 1543
   Posted 2/3/2006 2:32 PM (GMT -6)   
Sounds like you're on the mend Jason!

Nal
Regular Member


Date Joined Jan 2006
Total Posts : 410
   Posted 2/4/2006 8:33 PM (GMT -6)   

Checking in to see how you are doing now? 

 

Nancy


Sabres978
Regular Member


Date Joined Jan 2006
Total Posts : 26
   Posted 2/4/2006 9:32 PM (GMT -6)   
Hi Nancy,

Thanks for checking back. I was feeling well until last night, when I had a bad bout of reflux. It's been rough but I'm still hanging in there. How are you doing?

Today I was reading about the Stretta Procedure. I was wondering if anyone out there has any information on it, or if anyone had it?

-Jason

Sabres978
Regular Member


Date Joined Jan 2006
Total Posts : 26
   Posted 2/6/2006 12:46 PM (GMT -6)   
The results from the endoscopy showed pharyngitis, gastritis and a build up of bile in the stomach. Obviously the bile was causing the stomach distress and the reflux. The doctor said the valve that allows bile into the stomach was wide-open. He prescribed Carafate to address the gastritis and didn't seem too concerned about the valve being open, that it would close up after we address the gastritis. I'm not so sure about that, though?

Well, I guess this explains why the PPI's weren't working...

Nal
Regular Member


Date Joined Jan 2006
Total Posts : 410
   Posted 2/6/2006 1:33 PM (GMT -6)   

There are medications that can shut that valve down.  I dont get why he wouldn't address that first before healing the gastritis??  That makes no sense.  Hope the carafate at least helps.  Are you staying on the nexium too??

 

Nancy

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