Surgery w/o erosive esophagus or barrett's?

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theacidrefluxman
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   Posted 5/22/2012 6:46 AM (GMT -6)   
For all of you who got the surgery a lot sooner than I did, did you have to go against doctors recommendations in terms of your esophageal mucosal state and the best way forward?

Looking over a few threads yesterday it seems a lot of people make the surgery decision within 1 year of having GERD. I have had it for 4 years and my doctors have told me to hold off on surgery, especially because my endoscopies are generally normal (my first one showed lowest grade esophagitis).

I am not the type who follows what the dr. says just because he is a doctor, but at the same time I wouldn't feel bright going against various doctors (and surgeon's) recommendations against surgery.

Thanks!

ericapeace2000
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   Posted 5/22/2012 7:39 AM (GMT -6)   
I am in the same boat. I have been dealing with this for 7 years. My endoscopies show mild inflammation of the esophagus. I think it is difficult for people like us to get approved for surgery because there is no "damage" even though we are suffering. I am not sure what the requirements will be for the LINX, that one looks promising, but I know there are specific criteria you have to meet. The Nissen seems to have complications and also has complications. I have not pursued the surgical route because I just have not been sure about any of the procedures. I am waiting to see how the LINX does, as it is reletively new. But I am not thrilled about any of the options.
Diagnosed GERD, no other medical conditions (this one is enough)

theacidrefluxman
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   Posted 5/22/2012 7:39 AM (GMT -6)   
In other words I guess I feel like I am left behind, with other people getting surgery relatively much sooner. But at the same time I trust my doctors here, especially my current one. So I am just trying to find out if my experience is normal or not. Thx.

ericapeace2000
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   Posted 5/22/2012 8:01 AM (GMT -6)   
I think it really depends on the severity of the damage. People have reported asthma/lung issues, esophageal ulcers etc. A lot of people on this forum have been dealing with GERD for years and years, I think I saw someone posted 20 years. I think everyone's situation is different. If you trust your GI, continue with his/her recomendations.
Diagnosed GERD, no other medical conditions (this one is enough)

DOGGBONES
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   Posted 5/22/2012 8:52 AM (GMT -6)   
ARM,

I have been dealing with this gerd crap for about 17yrs, only in the last 4 yrs did I finally figure out I'm in trouble and have real issues that won't just go away. I will not opt for any kind of surgery until I'm forced to do so. As always, I take two steps forward then one step back (sometimes two steps back).

I bought some of the Kaufman/DR. Oz Evamor water (ph 8.8), drank it for two days and now my throat is very tight and sore. Not really sure it's from the water (should be good for me), but I won't drink anymore until I can get my throat feeling better. So depressed!!!

Doggbones

ericapeace2000
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Date Joined Mar 2012
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   Posted 5/22/2012 9:04 AM (GMT -6)   
17 years is a long time. It seems to be intermittent, one day ok the next not. I have been able to get all my original symptoms under control, now I have a new one (sore throat). This is nuts! Sorry to hear you are depressed. I get depressed and anxious too. Not sure what is going on with the water....
Diagnosed GERD, no other medical conditions (this one is enough)

lnfregret
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Date Joined May 2012
Total Posts : 9
   Posted 5/22/2012 5:40 PM (GMT -6)   
i had gerd and severe heatburn for over 20 years. water gave me bad heartburn! I found out 8 years ago i had a large hiatal hernia. no one told me this caused gerd, heartburn and they never said anything about surgery. well last year had endoscopy again. found large hernia and dysplasia in esophagus caused by gerd which no one told me would happen and that my stomach was actually up in my chest. wish they had told me 8 years ago, then i would not have precancerous cells in my throat. gerd is serious.

DOGGBONES
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Date Joined Apr 2012
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   Posted 5/23/2012 7:47 AM (GMT -6)   
Infregret,
 
I had barretts with no dysplasia dx in June, by March I had reversed the barretts. Here's what I did.....
 
1.diet changes; all the normal.....eat 90% chicken and turkey for meat (fish if I could choke it down). Sweet potatoes, raw carrots, broccoli, spinach, blackberries, whole grains, . I stay away from soda, coffee, choc, chips, dairy, pizza, beer etc.
2. spirulina (loaded with chlorophyll)
3. sleep inclined on left side
4. manuka honey (the higher the active+ the better)
5.aloe vera gel (lakewood brand has NO citric acid)
6. carafate (coats and protects from more damage)
7. Tums or gaviscon as needed
8.dexilant (ppi)
9. zantac in the evening (h2 blocker)
10. dgl (when i can't time the carafate)
PS: I know the honey and aloe will not stop the gerd, however they are proven healers so I believe they played a huge part in my progress of starting to heal my LES.
 
Good luck and best wishes,
Doggbones

ericapeace2000
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Date Joined Mar 2012
Total Posts : 1110
   Posted 5/23/2012 8:24 AM (GMT -6)   
Doggbones,

I am basically doing what you are. I also use aloe vera juice (mine i s George's Aloe Vera which also has no citric acid and tastes sort of like spring water) and manuka honey. They seem to soothe. My diet sounds similar to yours except im off carbs right now...I am asking my GI doctor if I can add in whole grain bread and soy cheese/soy milk when I see him in a few weeks. I have been able to get all my symptoms under control except now I have a sore throat...it could be non related to GERD or related. Gaviscon at night seems to help me also. We dont seem to have carafate here. I am also on a high PPI does of Zegrid until June 15th. I may have to stay on the dose a little longer if this throat does not dissapear (if it is reflux related, it was not an original symptom). I have only been on this rigid diet for 3 months. My hope is that in a few more months I will be able to occasionally have some pasta or a rum in water (non acidic drink...PH is 7-7.5 but still alcohol).
Diagnosed GERD, no other medical conditions (this one is enough)

theacidrefluxman
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Date Joined Oct 2009
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   Posted 5/23/2012 11:53 AM (GMT -6)   
This is just anecdotal, but from what I gather it seems that many people are Barrett's free after 5-10 years, but that most people who post on here noting that they have struggled 15 years + tend to have Barrett's. In addition, they seem to have it diagnosed late fairly frequently, as opposed to after their first scope. No idea what to believe on this. As I have noted, my doctors have all said generally mucosal state doesn't change after first scope, and I've seen studies where after 10 years of even daily symptoms only 10% of erosive esophagitis patients get Barrett's.

DOGGBONES, thanks again for your info. I do most of those things but am now going to implement new ones (i.e. spirulina). Just curious - did you notice less symptoms from when you had Barrett's to now? In other words, did your symptoms get better as your esophageal mucosal state did?

I am on week 2 of the Koufman diet (for the 2nd time), follow all GERD friendly behavior 100% and am taking Prilosec and it seems to make absolutely no difference. I have had the same symptoms when taking no medication and eating pizza. Even living as far as I can tell the perfect GERD friendly life, last night was potentially the worst GERD night of my life.

Post Edited (theacidrefluxman) : 5/23/2012 11:58:22 AM (GMT-6)


WJF
Regular Member


Date Joined Sep 2011
Total Posts : 273
   Posted 5/23/2012 5:29 PM (GMT -6)   
hi AFM,

i wonder if you have a hypotensive LES? (very low LES resting pressure from manometry)

There are 3 potential root causes of GERD connected to LES malfunction:
1. tLESr
2. hypotensive LES
3. large HH

category 1 patients will respond well to lifestyle modification.
category 2&3 patients will need medications in addition to lifestyle modification.

DOGGBONES
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Date Joined Apr 2012
Total Posts : 707
   Posted 5/23/2012 5:52 PM (GMT -6)   
ARM,
To be honest I had less symptons before they put me on daily high doses of ppi's starting last June. I was put on ppi's years ago, but they never really explained anything to me about as to what was really going on or what could happen. So, I would take them off and on, I even went months at a time and took nothing. My dr. would always ask "why don't you take your meds" and I would tell him "why would I when I don't feel bad", and then he says...nothing.
 
As my esophageal mucosal state improved my symptoms have remained the same ever changing daily, however I do feel like my throat is less sore. My symptoms are about the same even when I eat bad as well.
 
erica,
I eat 7/9 grain flaxseed bread a few times a week, soy cheese once a week or so and soy milk my cheerios every morning.
I've only had a couple drinks since June......oh, how I miss my beer.
 
 

theacidrefluxman
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Date Joined Oct 2009
Total Posts : 739
   Posted 5/23/2012 6:58 PM (GMT -6)   
DOGGBONES,

Actually you are right, I've been diagnosed with hypotensive LES (as well as hypomotile esophagus, dysmotility (maybe the same thing?)) I am going to clarify with my Dr. why I am not a good candidate for surgery, because it would seem to me like these are mechanical causes and that a surgical solution would fix it. I think his answer will be 'you don't have erosive esophagitis'...wouldn't people with hypotensive LES and other mechanical problems be the ones to benefit from surgery?

I was also diagnosed with a small hiatal hernia but all doctors have said its too small to be the cause of anything...

drtinsac
Regular Member


Date Joined Apr 2012
Total Posts : 458
   Posted 5/24/2012 10:30 PM (GMT -6)   
ARM, if you are an upright-only refluxer (0% acid time when supine) then please check out my thread about isolated upright refluxers. On mobile now so can't link. That study had a theory explaining how body position can affect reflux in certain people, and those people even with mild esop. damage and low demeester scores, benefitted from surgery. I will be taking that article with me into the surgeon for consult. Even a small hiatal hernia can be implicated.

ericapeace2000
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Date Joined Mar 2012
Total Posts : 1110
   Posted 5/25/2012 9:01 AM (GMT -6)   
I have had 2 endoscopies but I have not had the mamomtry test yet and I am thinking I probably need to. The PH study would be difficult for me as I would have to go off my medication for a period of time and I do not think I can function at work like that. Is the mamotry test done at the doctor's office or is this something like an endoscopy where I would have to go to a center?
Diagnosed GERD, no other medical conditions (this one is enough)

Jonh71
Regular Member


Date Joined May 2012
Total Posts : 121
   Posted 5/25/2012 9:45 AM (GMT -6)   
Manometry is done at the hospital as it requires a number of small tubes to be placed through your les and water is pumped through to establish the back pressure that your les exerts. This is done by a nurse and takes around 30 minutes. I wont lie and say it is no problem as it is not at all pleasant but for me the gastroscopy was much worse. The test is normally followed by a 24h ph test.

As for a week off ppi's I recently had four days and it was uncomfortable but I am still here and I look at as a necessary evil. I can only suggest what helped me when I had to stop before my last test was that I could take gaviscon upto 3 days before and I drank only milk and ate mostly yoghurt, again not pleasant but I looked at is needed in the long term. Good luck.

drtinsac
Regular Member


Date Joined Apr 2012
Total Posts : 458
   Posted 5/25/2012 10:22 AM (GMT -6)   
You have to go off PPIs for a week or so, but you can take zantac/ranitidine up to a day or 2 before (IIRC). The manometry was a most unpleasant test for me since my main symptom is sore irritated throat, the nurse kept telling me "DONT SWALLOW" (hard to do with a tube in the throat which is already sore and irritated) and was adding all kinds of pressure by telling me that there's other patients coming, etc. I finally told her to stop telling me NOT to swallow so that I could try to put my mind elsewhere. That finally worked.

dencha
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Date Joined Feb 2009
Total Posts : 7180
   Posted 5/25/2012 10:56 AM (GMT -6)   
Hi ARM,
Whenever I had an endoscopy my esophagus was not even inflamed.  (I had been on 40mg PPIs twice a day for years, and they obviously were doing their job in regards to the safety of my esophagus.)
 
My PCP pushed and pushed for the surgery against my GI docs better judgement, because he was certain that my reflux was causing my lung issues to be far more severe.  Finally, after 5 years of suffering and my PCP's haranguing, he finally gave in and gave me the option of "continuing on the medication or see a surgeon".  The medication wasn't working, so I chose the surgical option. 
 
My surgeon's only concern was my DeMeester score, which was very borderline.  Still, he was willing to go forward on the information he received from my docs.  He assured me that if my asthma was being caused by reflux, then my asthma issues would improve.  I had surgery 3 weeks later, and the rest is history.
 
I always knew it was a crap-shoot and that it might not do the trick for me.  Still, I was out of options and couldn't go on living the way I was.  So I decided to take the chance that it might help, and if it didn't, at least we could cross that option off the "To Do" list.  Thankfully, it did work.  If I needed a redo, I'd have it in a second because I don't want to go back to the way I was.
 
Good luck with your quest for a solution!
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.”
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