6-months post Nissen update - new Demeester score after surgery

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Non
Regular Member


Date Joined Dec 2011
Total Posts : 42
   Posted 5/5/2012 5:31 AM (GMT -6)   
Hi!
 
I am now 6 months post op and just finished my endoscopy and PH-test, got the results a couple of days ago and wanted to share and ask you guys about it.
As some of you know I´ve been struggling with a hard recovery and especially a sore throat and other issues with my throat. Also have/had feelings of "regular" heartburn during daytime and sometimes after meals.
 
Got the results back: Endoscopy looked great, wrap looked "brand new" as the surgeon said. No new hital hernia.
PH-test/de Meester score when 6 months out:
Total time of reflux 2,2% (all over result). Over 4,5% considerd reflux.
Upright position: 3,8%. Over 8% considerd reflux.
Supine position (laying down) 0.0%. Over 3% considerd reflux.
De Meester score: 7.6. Everything under 14, 72 considerd normal.
 
Total episodes of reflux: 4. All in uppright position.
Total time of reflux: 25 minutes.
Longest reflux: 21 minutes.
 
Here is my question: My number looks pretty normal I guess, but I am a bit puzzled about this one long episode of reflux, lasting 21 minutes. Does this mean I still have to take medicin? Thinking surgery wouldn´t let any reflux sneak out, especially not for 21 minutes.
 
I really went all in when I had the PH-test, ate all kinds of fatty foods and drank almost a half a bottle of white wine. The reflux incident occured during/around my intake of wine and dinner. Did notice that when I got the results/papers back about the PH-test.
Since I don´t really feel when have reflux, just a general discomfort and throat issues during the day, I did not use the button during the PH-test. So these episodes of reflux are the ones that the hospital staff noticed when going through the test.
 
I was also on PPI´s up til a week before the PH-test, wonder if this could have an affect on the PH-test (rebound effect coming of PPI´s)?
 
Need your advice, knowing you guys are the best at these kinds of questions. Should I be celebrating or keep taking my PPI´s?
 
Hope all is well!

dencha
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Date Joined Feb 2009
Total Posts : 7185
   Posted 5/5/2012 8:56 AM (GMT -6)   
Hi Non,
I think many of us thought that our Nissen surgeries would take our reflux to zero, but unfortunately that is impossible if we want to be able to swallow food and expect it to enter our stomachs! 
 
This is the thing...Because reflux is possible after surgery, we still have to be aware of what and how much we're putting into our stomachs.  Otherwise, that pesky reflux will start up.  Certain triggers will cause reflux, but NOTHING like the reflux you had prior to your surgery.
 
All surgeons aim to do is get your reflux back to "normal amounts". Wouldn't it be nice if we were able to get it to zero?  Unfortunately, no such luck.  Since "normal" reflux amounts are not generally damaging to the esophagus, your surgeon isn't likely to recommend PPIs for protection purposes.  Still, if you're experiencing discomfort at times because of eating extra amounts of trigger foods, you can pick up PPIs for a short duration, until things settle down again.
 
My PCP and asthma docs want me on 40mg Protonix before dinner, and I still sleep with the head of my bed elevated to minimize even tiny reflux events.  That's because I have very reactive lungs and asthma. 
 
Before my surgery I was on dangerous amounts of steroids to try to keep me breathing.  Now I take a tiny fraction of the inhaled steroids I was taking, and my lungs are GREAT.   I'm fine wth the proactive treatment of possible reflux, because I trust their judgement and want to keep my lungs in the great condition they are right now. 
 
Prior to surgery, even though I was taking 40mg Protonix twice a day and 300mg Ranitidine, my reflux was bad enough to keep my lungs an a "life-threatening" condition (my doctor's words as he pushed and pushed me toward surgery). 
 
Some take PPIs regularly if the small amount of reflux they're experiencing is bothersome.  The main thing is to remember that you still have to be careful with trigger foods.
 
Since you were really challenging your stomach/reflux during the test, I'm sure that it was the reason your reflux was more extreme. The rebound effect was another exacerbating issue. 
 
I'm very glad to hear that your wrap is in tip-top condition! yeah
Have a great weekend,
Denise
Words of wisdom by Eckhart Tolle:
"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”

Post Edited (dencha) : 5/5/2012 7:59:53 AM (GMT-6)


Non
Regular Member


Date Joined Dec 2011
Total Posts : 42
   Posted 5/5/2012 10:28 AM (GMT -6)   
Hi Dencha! Always nice to hear from you.
 
Thanks for your answer, guess you´re right about still pampering our stomachs. I really do it on a regular day, but I thought while having the PH-test done I would go for the extra everything and see what results that would bring me.
 
Do you (or anyone else) know if LPR still can be the case even tough my De Meester score are (back) to normal? Or is this something that also will pass over time (it has been heavily reduced over months)?
 
My De Meester score before surgery where up in 20% in upright position and 15% all over result, so my reflux has really improved with this surgery. My mind tells me everything should be okay, but it is hard to shake of this sometimes sore throat and post nasal drip...
 
The weird thing is that I really don´t feel any different of PPI´s compared to when I was taking 45-60 mg/day (after surgery)... Been of medicin for almost 3 weeks now.
My first four months of recovery were horrible! So either the surgery made my PPI´s useless for treating reflux OR this is/was just a really weird and long recovery.
 
Again, thanks for answering!

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7185
   Posted 5/5/2012 8:32 PM (GMT -6)   
Hi Non,
This recovery is very different for every person (although it's true that certain post-op symptoms are universal).  I'm no expert, but it's my understanding that people with LPR (I'd count myself among those) are more reactive to small amounts of refux than people with typical GERD.  Therefore, I'd say yes...even with "normal" amounts of reflux you can have LPR symptoms.
 
That's not to say that you won't find relief as you continue to heal over then next months.  I can say with confidence that my symptoms and the post-surgical quirks that I had continued to improve into the second year of recovery.
 
It's not easy to trust that things will get better.  I understand that. I wouldn't discount the possibility that PPIs at a lower dose might help your symptoms.  In my opinion, even if I have to take a PPI I'm far better off than I was prior to surgery.
 
Here's hoping that you healing continues to provide noticable improvements for you.
Very best wishes,
Denise

Non
Regular Member


Date Joined Dec 2011
Total Posts : 42
   Posted 5/7/2012 3:18 PM (GMT -6)   
Hi JPT!
Thank you for your answer, intresting with the pepsin and raise the PH to 7/8.
How does this pepsin thing works? I´m not familiar with it, even tough I´ve heard about it. How do I stop it? Or fix it?

Actually looked at the Jamie Kaufman cookbook yesterday and maybe that is something for me.

I really do suffer(d)? from gerd/lpr. Looked up my pre-op De Meester score today and it was 52. Post op it is down to 7,6 so things has really improved. Just hard to take it in when I still suffer from reflux like feelings...

Again, thank you for answering!
Non

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7185
   Posted 5/7/2012 3:23 PM (GMT -6)   
Hi Non,
Those DeMeester scores are all you can hope for!  It does take time for things to heal, so hang in there...
It'll happen.
Denise

joe1619
Regular Member


Date Joined Dec 2009
Total Posts : 293
   Posted 5/8/2012 10:22 AM (GMT -6)   
only 4 reflux episodes that is awesome. I would watch your diet i had over 50 post op and ate what i wanted too. my demmester was .8 but see how this is all goofy. you reflux 4 times i reflux 50, mine were mostly non acidic. In my opinion demeester is worthless for lpr as even a few episodes give us symptoms. I reflux 51 times you reflux 4 yet your score is lower. that makes no since demeester is for traditional gerd and is poor with lpr. I had 20 episodes a few months post op and 51 a year out. now im at 18 months and i feel horrid my allergies are really drying my throat and causing pain. The dr. wont help cuz my wrap is intact. doesnt mean it is working..plus i still take 2 a day aciphex. I bet if you hold off the wine and take acid pills your at about 0

Non
Regular Member


Date Joined Dec 2011
Total Posts : 42
   Posted 5/9/2012 6:32 AM (GMT -6)   
Hi!
 
Thank you all for answering, it really does help in this very special kind of healing. Long live the internet!
 
JPT: I will look into the J Kaufman diet, but for how long will this pepsin thing go on? Does it work the same way as regular reflux? And shouldn´t the Nissen surgery prevent pepsin to back up aswell? I really do appreciate our knowing in this, need some guiding on this matter.
 
Joe1619: I am really sorry to hear about your ongoing problems with reflux. I am also a bit puzzled about the fact that we have almost the same De Meester score, but I read that you have non-acidic reflux, could that be the problem? How do they know it´s non-acidic? I didn´t know that the PH-test could see that aswell as "regular" reflux.
 
I think my score is realtivly "high" (my score was 7,6 everything under 14,72 are "normal")  because of the long (21 min) reflux episode, without that one I guess I would be down to almost nothing.
But if you (and possible me) have troubles with non-acid reflux, wouldn´t the surgery help us? I mean, things should at least be thighter and let almost nothing sneak out, acid or non-acid - does anyone know?
You also wrote about your allergies, is it possible that they are the root to some of your troubles?
 
Hope all is well!
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