point of clarification: symptoms while on PPI's

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

theacidrefluxman
Veteran Member


Date Joined Oct 2009
Total Posts : 739
   Posted 4/26/2012 10:28 AM (GMT -6)   
Just a quick question. I am back on PPI's without the RUQ pain I was having as a side-effect before. Nexium hasn't been working the last month or so and I changed today to Prilosec.

In general, if you are on a PPI and have symptoms, but a PH test comes back normal, doctors consider 'problem solved' except for the quality of life standpoint. Is that right? I mean, they think that the symptoms are just non-acidic reflux and therefore benign at that point (with continued PPI use)?

Thanks for anyone who can clarify!

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 4/26/2012 11:06 AM (GMT -6)   
Hi ARM --

I can't speak for the assumptions that all doctors make, but they don't like chronic patients with stubborn symptoms...because they're in the business of "fixing" people, and those patients make them look bad.

"Normal" reflux falls into a range somewhere between 0 and 5% exposure to pH levels <4. The theoretical limit of a Nissen is about 2%. The difference between surgery and PPIs is, of course, you're still fully refluxing while on medication -- just that the acid component has been eliminated. So, what you say is possibly true, although I've been told that corrosive non-acid components in reflux is uncommon. For significant quantities of bile to travel backwards that far, requires other conditions.

Stubborn, atypical symptoms may be the result of a weak UES, extreme sensitivity to remaining reflux, and/or a sympathetic response by adjacent tissues. There has been some inconclusive experimentation with low-dosage anti-depressants to desensitize nerve endings in the esophagus, but that seems to only help a small percentage of patients.

A doctor may not think "problem solved" with a normal pH, but if symptoms persist, in my experience he's going to be frustrated or recommend another physician. Keep in mind that if you fall into this category of normal pH with continuing symptoms, surgery has a low resolution rate. This is a judgment call -- if you're at 4-5%, then 2% through surgery may offer some relief. But any margin less than that is not worth the risks.

This is the reason why studies of reflux therapies usually use a "quality of life" questionnaire. If they used raw pH numbers, it would skew the results.

I realize it's not a perfect solution, but if you can find some relief through meds without too many side-effects, count yourself as fortunate...

-Bruce

aeshleyrose
Veteran Member


Date Joined Jul 2011
Total Posts : 656
   Posted 4/26/2012 12:22 PM (GMT -6)   
Hey Dan, unfortunately I think you are correct. On the other side of the coin, what can they do?

Bruce, what do you think of this scenario - PPI's help the person's symptoms, but the pH testing is within normal limits. In your learned opinion (I mean that sincerely) is this a good enough reason to try a Nissen?

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 4/26/2012 2:52 PM (GMT -6)   
I think you're right ARM - and their other response is to suggest increasing the ppi to see if that helps, which it might, but not for those of us who struggle with side effects.

I think I may well fall into the group that has some hypersensitivity - the amount of symptoms I get, the nausea and sensation of reflux, and the impact on my life, far far outweighs the actual pathology found. My cons thought surgery, in my case, would be an extreme measure based on the little pathology found.

I'm glad you're tolerating the meds this time round ARM - good news.

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

drtinsac
Regular Member


Date Joined Apr 2012
Total Posts : 458
   Posted 4/26/2012 3:34 PM (GMT -6)   
Bruce - do you have a reference for the statement that surgery has a low resolution rate if the person has normal PH study and continuing symptoms?

I have been investigating surgery lately, and have read that the most common (symptom) reason for surgery is regurgitation, which is weakly acidic due to the acid blocking effect of PPI. (They probably do not find reflux with PH < 4 in patients on PPIs). Since the resolution rate after surgery is very good, meaning it decreases regurgitation, and regurgitation is the most common reason, then the conclusion is the surgery must affect it. But perhaps when you were referring to symptoms, you meant something other than regurgitation of weakly acidic fluid? I have also read that patients who improve while on PPIs are good candidates for surgery, even people who completely resolve while taking PPIs who do not want to take the medication forever.

To acidrefluxman, from what I have read, surgery could be indicated if you continue to have symptoms on acid blockers. See page 4 of this PDF (a very good summary article about refractory GERD):
http://www.choicehealthinc.org/BlankForm/HC%20GERD%20Update.pdf

Did you have PH study done, and were your symptoms associated with reflux?

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 4/26/2012 3:53 PM (GMT -6)   
Hi Ashley --

I fall into the category that you propose. My pH percentage dropped from 6% to 2.9% after my TIF. I can have complete (as far as I can tell) resolution of my remaining symptoms with PPIs, if it weren't for the debilitating headaches and heart arrythmia.

At the end of my testing and consultations at the Mayo Clinic, the Nissen was "on the table." The surgeon told me he didn't recommend the surgery. Under the best of circumstances, I may have experienced relief for a few months, but as the fundoplication healed and settled it's likely that the symptoms would return. This is what happened after my TIF -- I was symptom-free for about four weeks as the surgical site was tight and swollen. Then, as it healed and the swelling subsided, symptoms returned.

My condition was discussed with the entire GI/surgical team (apparently they get together once in a while to do this with certain patients), with a promise that they would "get back with me" with some alternate proposals. It's now four months later, so I guess I have my answer.

In my case, for 0.9% possible reduction in pH, the Nissen is not worth the risks and a lifetime of adjustments/caveats. As I proposed above, if the patient is more in the 4-5% range, perhaps there might be more benefit. However, if the patient is experiencing stubborn atypical symptoms, surgery does not offer a statistically-good outcome.

If the PPIs work, and the patient can tolerate them, this offers a "backup plan" for those who go through with surgery. If the surgery is unsuccessful in reducing the pH exposure to a tolerable level, then the PPIs (at probably a lesser dosage) can bring the patient close to that magic 0% number.

The problem, as I see it, for those in this stubborn category, is the unusual sensitivity. If a patient is experiencing symptoms within the 0-5% range, treatments get dicey. No surgery will eliminate the reflux 100%, and won't address a weak UES. (PPIs may actually lower a patient's exposure to reflux more than surgery, too.) Causes and individual conditions vary from individual to individual, allowing some things better probabilities than others. But an understanding of all this is crucial when weighing the decision, as well as expectations.

This messageboard has a tremendously helpful support system for those who have the Nissen...extremely invaluable. But there is a danger...especially if you're suffering...to overlook how serious this operation is. Sure, with the advent of the laparoscopic technique, the invasiveness is less, but it's still a radical overhaul of a patient's upper GI. I don't see an appropriate amount of cautions about this procedure here, as it is not necessarily a cure-all, or appropriate for everyone. There are plenty of surgeons (experienced or not) who, when approached by a reflux patient who wants the Nissen, will do it without considering its viability. I could likely approach the surgeon who did my TIF, and he would do the Nissen without question. (To his credit, he did refer me to the Mayo when my symptoms persisted.)

It's especially difficult when one reads on the Internet that the Nissen is the best thing a patient ever did, and they would do it again all over. For some, this is true. But we must be careful where we hang our hopes, and not let those hopes overshadow what must be a highly individual procedure. I can't reiterate how important it is to categorize one's symptoms, and how that relates to surgery...or any treatment, for that matter.

Education is key. The patient must know as much about his/her reflux as any physician, and diagram symptoms. Collect all medical records and tests so that they can be reviewed at home, and perhaps carried to other consultations. Understand the differences between typical and atypical symptoms, and where that places him/her. Understand how meds work, and what they do/don't do. Understand what surgery can/can't accomplish. Evaluate where his/her expectations lie. And the list goes on...

There are so many "shades of gray" in this category, that what might be good for one is not good for another. I would not recommend "trying" a Nissen, at any rate. It must be viewed as permanent, because even if it is taken down afterwards, there are still permanent alterations that can't be repaired.

Viewed in this manner, it behooves the patient to be his/her own advocate. Under the best of circumstances, a physician probably won't spend more than 10 minutes reviewing a file. A patient should know themselves better than the physician does.

-Bruce

DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 707
   Posted 4/28/2012 11:58 AM (GMT -6)   
Wow Bruce, your wisdom is unmatched!
 
I see a top GI at UW Madison, and I received the same end results. All test are within normal range with acid surpression however I still have daily symptoms. Yes, he tried the anti-d's and all they did was turn me into a zombie with no relief so I stopped taking them. When all was said and done, he said there was nothing else he could do and would refer me for Nissen even though he thought I was not a good candiate for it.
 
When I asked if what I feel is caused by bile reflux, he kind of shrugged his shoulders and said maybe and nothing else. I agree that if their pills don't fix you it's off to Nissen and/or, you then are on your own.
 
I'm a chronic patient with stubborn symptoms and yes I feel that when they couldn't fix me all they wanted to do was make me go away.
 
Doggbones
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, April 24, 2018 7:08 PM (GMT -6)
There are a total of 2,955,268 posts in 324,203 threads.
View Active Threads


Who's Online
This forum has 162220 registered members. Please welcome our newest member, Mommadukes.
354 Guest(s), 12 Registered Member(s) are currently online.  Details
FATPRO, Nick_69, slick7, Wilderness, notquitesoscared13, Fletch10, Pratoman, G-Ju, Aurora2013, Sober1, elvin, iPoop