Help me piece the puzzle together

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beth0277
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Date Joined Jan 2012
Total Posts : 17
   Posted 1/23/2012 8:48 AM (GMT -6)   
I believe my case of "GERD" is a little unique, so I'll try to not be too long winded. about 20 months ago, I was sent for an upper GI by a doctor who was honestly trying to make extra money off of me because he has them done at his clinic. There was no need for one, I had stomach pain due to starting a new medicine that quickly went away. Anyway, during the barium swallow, a "small" amount of reflux was seen. I followed up with my GP and told her I was surprised by that, since I had NEVER felt heartburn in my life. She didn't want to treat me, since I wasn't having symptoms. I struggle with health anxiety so I read up about Barrett's Esophagus and convinced myself that I needed more follow up. I was referred to a GI and 12 months after my first barium swallow, I had an endoscopy which showed inflammation & ulcerations in my esophagus. My GI said she was surprised that I had never felt anything. Still, no pain, no throat symptoms, no cough, nothing.
 
I was put on Dexilant 60 mg/day for 3 months to clear up the esophagitis. I had another barium swallow just recently that showed that my esophagus looked fine, and noted "a minimal amount of reflux in the supine position that could not be duplicated." My doctor told me to stop taking the Dexilant and we will re-do endoscopy in 3 months to see if there is any "new" damage. If there is, I will need to be on a PPI longterm, I assume.
 
So, I stopped the Dexilant and something strange happened about a week later -- I am getting heartburn! I know about "rebound" from PPI's, so I'm not surprised by this, but I am surprised that I can feel it. It is almost a relief that I can feel something. I have a few theories as to what is/was going on with me and if anyone has any input I would appreciate it. I won't be following up with my GI until after the endoscopy but my anxiety is getting the best of me now.
 
Theory 1: I had/have very minor reflux but it has never been an issue. The esophagitis was caused by an antibiotic that I started taking 3 days before my endoscopy. I have read about "pill esophagitis" and the risks if you take pills, especially antibiotics at night time, which is what I was instructed to do with this medicine.
 
Theory 2: I started taking SSRI's after my son was born and 3 months before my first barium swallow. The SSRI's caused me to have some reflux, and also caused me to not be able to feel the reflux. I have read about SSRI's being used to treat heartburn pain in patients due to something with the pain receptors in the esophagus, so the fact that I am now feeling heartburn could mean that I had it during that time but just couldn't feel it because of the medicine that I was on. I had never felt anything before I was on the medicine and I don't think there was any inflammation in my esophagus during the first swallow test, which makes me think that the problem hadn't been going on long term.
 
Theory 3: I am getting reflux only at night, which is what is causing the damage to my esophagus. Though, I have never been woken up by pain nor had any pain at all in the mornings.
 
I guess I am just trying to piece the puzzle together. I feel like patients these days have to do a lot of investigating themselves to get to the root of issues. I am slightly overweight, but have been for about 5 years and never had an issue with heartburn before. I am no heavier now than I was before, and even though my pregnancy I had no heartburn.
 
My family feels that theory #2 is cut and dry as the cause, though my only hang up on it is the fact that the most recent barium swallow (when I was not on the SSRI's, though I am now on an SNRI, similar, but different in a lot of ways) showed "minimal" reflux that could not be duplicated (I guess the radiologist tried to get it to happen again and couldn't). This could be due to my weight, or maybe a slight effect of the low dose SNRI, or might be completely normal, who knows.
 
I was making pretty drastic lifestyle changes and hoping they would take care of my issue, but honestly, I don't want to sleep on a wedge or elevate the head of my bed if I don't need to. I don't want to give up my one cup of coffee a day. I am fine with losing weight (which I've lost 15 pounds so far and WILL get the rest off) and not eating before bed, but I don't want to make drastic changes if it is not necessary, meaning if the reflux was caused by medicine or something, I don't want to make the changes.
 
Does anyone have any input? I know a lot of you know a lot about reflux, so I am hoping you can help.

beth0277
New Member


Date Joined Jan 2012
Total Posts : 17
   Posted 1/23/2012 11:17 AM (GMT -6)   
Does anyone have any ideas? I am in tears and just so frustrated by all of this.

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 1/23/2012 11:24 AM (GMT -6)   
beth-

It is very difficult to say what is causing what. Some people have what is termed "silent GERD". They have GERD, but don't feel it. Some have said they have this and later on have started to feel heartburn.

I would talk more in depth with your GI. If you don't feel you are getting answers I would look for a 2nd opinion.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 1/23/2012 11:30 AM (GMT -6)   
Hi beth --

I can see you've put a lot of thought into this. I'm like you...I'm a "cause-and-effect" kind of person. My brain just wants to be able to wrap itself around a logical course of events.

But, I think in your case, you're going down a frustrating road that isn't going to be able to give you the answers you want. Doctors are still mystified by a lot of the details surrounding reflux, and sympathetic responses. It's common for women who are pregnant to experience GER, because of the pressure from the developing fetus to push upwards against the stomach. GER is not GERD, though.

Instead, I would encourage you to look for solutions that work for you, instead of looking to the past, as in, ""Why is this happening to me." Believe me, we all ask ourselves this constantly! But all I'm suggesting is to try to switch your focus away from the causes, and try to learn more about managing it, or learning about the tests that might provide helpful information, etc.

By the way, there's a lot that a barium swallow can tell a doctor, but it does have its limitations, too. A barium swallow is just a short-duration, "snapshot" of the conditions in your esophagus and stomach during the test. It shows the general physiology of the relative organs and LES, and the strength of the muscles involved in swallowing. But, in and of itself, can't diagnose GERD. It can identify GER episodes, and perhaps suggest a weakness in the LES if present, but only in unusual cases diagnose GERD.

The best way to diagnose GERD, and its severity, is with either the pH impedence test, or the newer Bravo pH study.

Those patients who are diagnosed with GERD usually find it is a progressive condition in its early stages, and it usually "levels off" at some point. This is a weakness with trying to figure out the reasons why something is happening, because the symptoms keep changing as it progresses...with no apparent rhyme nor reason. Trying to assign a cause really wastes brainpower, and this is exhausting enough without making it worse for ourselves! Now, it is true that there are trigger foods in most people, and behavior/diet changes can help. So, this kind of detective work from the patient can be helpful.

It's possible that the Dexilant worked for you in the early stages, and suppressed your reflux enough that you were relatively symptom-free. But maybe it's no longer working as well for you as it once did, or your reflux has progressed that perhaps a different PPI would offer better results. Things to discuss with your doctor...

Best wishes! We're here for each other, so be sure to ask lots of questions!

-Bruce

beth0277
New Member


Date Joined Jan 2012
Total Posts : 17
   Posted 1/23/2012 11:40 AM (GMT -6)   
So, if it is silent reflux, does that mean that I will have to be on PPI's for the rest of my life?

beth0277
New Member


Date Joined Jan 2012
Total Posts : 17
   Posted 1/23/2012 11:44 AM (GMT -6)   
Hi Bruce,

I read your response and I appreciate the thought. One thing I do want to mention -- I am no longer on Dexilant. My GI took me off of it because she wants to see if a follow up endoscopy in a few months shows any damage. She didn't seem convinced that I have GERD, but is confused as to why I had damage. I have never in my life felt heartburn before this rebound effect from coming off the PPI. I was diagnosed with reflux "by accident" when getting an Upper GI for something different.

I am so frustrated and have been crying all day. I just want answers. I know you say it's not good to look for cause and effect, but for someone like me who may have had the problem because of a medicine I was on, but am no longer taking, I don't want to be on PPI therapy long term if I don't need it.

I also don't want to end up getting Barrett's Esophagus because we are playing "wonder if you will have some damage at your next endoscopy?"

It probably sounds dramatic, but I truly feel like my life is over. I have a 21 month old son that I need to raise and I am so scared over all of this.

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 1/23/2012 11:57 AM (GMT -6)   
Beth-

The odds of getting Barretts is very low and the odds it will advance are very low as well. I have had barretts for about 5 years or so and sometimes they don't pick mine up in the biopsies.
There are many natural options you can try to help manage GERD, if you do have it. I am not really up to date with them, sorry. I didn't like the idea of taking high doses of PPIs for life myself and opted for the surgery.

I hope some of the people wjo are trying the natural approach will stop by and give you some insight.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 1/23/2012 12:03 PM (GMT -6)   
Hi again --

Please, please, put your mind at ease about Barrett's! If you have it, it's not a death sentence. OK, so it's not a great diagnosis, but in most cases, it can be treated, and only very, very rarely leads to cancer...and the jury is even out on that prognosis.

Secondly, I only read "heartburn" in your description of symptoms. Heartburn is the typical GERD symptom, but is not usually a marker of any of the atypical symptoms associated with silent reflux aka respiratory reflux aka LPR. Don't try to make it worse than it is! ;-)

It's not uncommon to have to search a bit to find the right GI doctor. Don't feel like you have to stick with your present doctor if you are not getting the help you need. Many of us have been through several before finding one who understands the diagnosis and treatment of GERD.

I agree with you, long-term therapy on PPIs is certainly not a desirable means of managing the condition. But millions and millions of people do quite well on PPIs, and never give reflux a second thought. If you are in a small minority of patients who either can't find relief through medication, or are intolerant, or want to be free from them entirely, PLUS, only have a diagnosis of simple GERD and not LPR, surgical choices offer excellent chances of success.

But don't "go there" yet. Take one step at a time, one day at a time, and allow yourself to breathe a little!

We're here for you!

-Bruce

beth0277
New Member


Date Joined Jan 2012
Total Posts : 17
   Posted 1/23/2012 12:19 PM (GMT -6)   
I know that heartburn is only one symptom, but the sad part is that I have never had ANY symptoms. Not one. No regurgitation, no sore throat, no coughing, nothing....

I am able to tolerate the PPI's (at least the one that I have tried) with no problem, but I hate the idea of long term side effects -- plus how am I supposed to know if it stops working if I never had symptoms to begin with?

I feel so hopeless.

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 1/23/2012 12:28 PM (GMT -6)   
I know exactly where you are in your thoughts right now, I really do. I find that trying to cultivate a little gratitude for what you have in your life helps. It sounds like you have a wonderful family. That's a great place to start!

There are others with much worse reflux than you are experiencing at the moment. Myself, I have LPR symptoms, had surgery in August of '11, still am experiencing symptoms, and can't take PPIs at all because of the massive headaches they cause for me. So, you see, you're still in a relatively "good place"!

Don't feel hopeless -- you have so much!

-Bruce

beth0277
New Member


Date Joined Jan 2012
Total Posts : 17
   Posted 1/23/2012 12:33 PM (GMT -6)   
Thanks, Bruce. I understand that -- I do. It's just so hard for me. I am 27 years old. I have a baby boy to raise and I am so afraid that this is going to turn into cancer.

I have severe anxiety disorder so things like this are so hard for me. I just don't know what to do. I feel so lost. I feel like I am just sitting around waiting to get bad news about all of this -- and worst of all, I can't feel symptoms. Some may think that is a good thing, but it is so scary for me. My family thinks that this was all caused by the SSRI medication that I was put on but I don't know. I can hope that it was, but who can really say? They think it caused the reflux and then also caused me to not be able to feel it, but there is no way to know right now. I do know that I am experiencing heartburn for the first time in my life, as a rebound from the PPI's. My family seems to think that is a good thing that I am feeling it, since that means I am able to feel something, which I couldn't before.

aeshleyrose
Veteran Member


Date Joined Jul 2011
Total Posts : 656
   Posted 1/23/2012 1:06 PM (GMT -6)   
Hey Beth,

I am also 27, however I do not have children and my GERD is very symptomatic.

I can completely understand your feelings of hopelessness, so all I can encourage you to do at this time is to try to abate your anxiety as best you can. Like Bruce said, Barrett's is NOT a death sentence. Have you read the statistics on it? It only increases your risk of ESOPHAGEAL cancer (specifically, adenocarcinoma, an already rare type of cancer, may I add) by something like 0.5% per year. I can think of 3 members on this forum off the top of my head (Bill above is one of them) who are living with Barrett's cancer-free. I don't suffer from anxiety so I don't mean to just tell you "not to worry", but the numbers - the cold hard facts - are on your side. Because anxiety can lead to GER/GERD anyway, I think that may be your number one priority right now. You have to get out from under the cloud.

My second suggestion is to be a fierce advocate for yourself. If your doctor is giving you non-answers, seek a second opinion. A lot of us (myself included, in the past) have tolerated doctors telling us less than satisfactory things because we have a great deal of respect for them. I still respect doctors a great deal, but the fact is that I am suffering, not them. That can put a lot of distance between my real pain and their suggestions of "oh, let's wait and see". The fact that your endoscopy shows ulcerations means that something is happening. Talk to you doctor about what to do! Write down questions before you go. Write down what you eat and when and how you feel before, during and after you eat it. Does this sound taxing? It totally is. But it will not only help you eliminate symptoms (as I understand, you're having heartburn now, yes?) but will also show you doctor that you are actively interested in healing yourself. I (personally) believe that there's a difference between a patient coming in and saying "I don't know, maybe, sometimes, yeah I guess..." etc, versus "Yes, that specifically happens here" or "Yes, I have felt that way on this date after [various activities]".

Always, always feel free to come back and ask us questions. We're all here to help you and ourselves :)

Take care,
Ashley

beth0277
New Member


Date Joined Jan 2012
Total Posts : 17
   Posted 1/23/2012 1:37 PM (GMT -6)   
Thanks, Ashley. I am having heartburn right now but I am confident that it is a rebound effect of coming off of the PPI's. I have never had it before in my life.

I am going to follow up with my GI in a few months and seek a second opinion, most likely. I hate dealing with all of this, so much.

I am trying to get my anxiety under control, but the sad fact is that my anxiety is health related. So, when I have health issues to deal with, my anxiety sky rockets. Until I get them straightened out, I will be a basket case.

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 1/23/2012 4:06 PM (GMT -6)   
I would just like to say that acid reflux in pregnancy is not necessarily anything to do with the stomach being squashed by the baby - my pregnancy GER started from Day 1. I know you didn't have that trouble but I just felt like getting that off my chest!!!

From one mummy to another - I was asking myself what would I do if it were me, with some pathology to go on but no actual symptoms. If anything I'm pretty much the other way round - plenty of symptoms and very little actual pathology! This is what I felt I'd do if it had happened to me your way round; I would want to take no drugs for a while and get re-scoped in 6 months time'. If that scope looked OK (i.e. stable, no signs of getting worse), I would say I'd want another repeat in 6 months' time. If that second repeat also looked stable I'd then say I'm coming back in 12 months for another look at things. If over time things have actually healed then you'd know you'd made the right choice in not taking medication. If in 6 months' time things look like they've gotten worse, then, and only then (for me) would I make the choice about taking a medication to control it. And when you think about it there are plenty of other conditions people have to take medication for, when they actually have no symptoms to speak of (high cholesterol for example). That's just how I think I'd feel about it - you have to make a choice that you feel comfortable with - whatever lets you sleep at night!

The other thing I would say to you is that I recently posted a link to a very recent study showing that the trend of things for people with GERD over a 5 year period is to remain stable. Most people stay pretty much the same over a 5 year period - a few get worse, a few get better. The researchers concluded from that that the current treatment strategies are therefore adequate.

Lastly, you have to remember that Barretts can occur in people who have no history of heartburn or GERD (mostly men over 50, but it can be found in women too, less commonly albeit) - Barretts just isn't that well understood. It used to be strongly associated with cancer of the oesophagus but that opinion has been very much revised - the risk now (if you were to get Barretts) being put at less than 1%.

I would make a short term decision for now - you can keep reviewing every 6 months or so (bearing in mind that even if a person has got Barretts, they are unlikely to be recalled for a repeat scope for at least 2 years, so 6 months isn't very long).

Hope that gives you some peace of mind.

MMM
New stuff: GERD, Recurrent cystitis/Overactive bladder
Lifelong stuff: Food allergies/intolerance, eczema, asthma
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