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Gerd - hard cases - no one seems to have resolved

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Posted 6/11/2013 1:26 AM (GMT 0)
 

I have been reading this board for the past month or so. There are three types of folks

1. Minor acid reflux  - most people fall into this category but these are not very vocal. These folks have their issues fixed with short PPI course and then go back to normal.

2. Medium acid reflux - more chronic - They get relief from PPI and combination of other drugs (carafate, gaviscon etc) - but they continue using them. Seems like very hard to come off PPIs once you start taking them. Most of the attempts to come off the PPIs fail

3. Serious acid reflux - They do not get much relief from PPI and combination of other drugs (carafate, gaviscon etc) - but they continue using them and trying different ways. They would give anything to exchange places with #2 above. Some days are better than others. Very strict diets and lots of trial and error. Most of these opt in for surgery sooner or later.

It seems like if you fall in category #2 or #3, its best to go for surgery quicker - because the long term damage is less due to acid reflux.  None of the natural cures seems to work based on my read for category #2 and #3.  

I am also very surprised that there is no "GERD vacation clinics" around where someone has set all the alkaline diet, schedule, sleeping arrangements, stress reliefs etc. to allow folks to visit and come out clean after 8 weeks or so. It is just too hard to do all this by oneself between appointments, readings, diet, stress management and crying.

I am somewhere in between #2 and #3. IF I get out of this situation, I will definitely set something up to provide this service.

If you are one who is in category #3, pls respond. It is very important for the newbies to get an assessment of how your journey has progressed.

Posted 6/11/2013 1:49 AM (GMT 0)
Hi fight-gerd,

I think you are right in terms of symptomology.However, the issue is whether symptoms are serious or whether underlying damage is serious.

Symptoms are bad predictors of disease activity/progression. In fact, the less symptoms one has (among GERD sufferers), the more the risk of Barretts and Esophageal Adenocarcinoma.

I've been on the GERD road for 'only' five years now. Five years has been long enough to learn a lot.

Among the things that I have learned while doing research and contacting authors of studies on the subject are the following. 1) Symptoms do not correlate to underlying disease, 2) Surgery isn't always the best option, and depends on individual patient characteristics, 3) developing cancer in those without Barrett's is of such a low risk that chronic GERD effectively becomes a 'quality of life' issue and not a 'cancer risk' issue (not my words, but those of doctors and researchers well-versed in the subject), and 4) Barrett's usually appears on first endoscopy or never.

I am group 3...tried everything under the sun with no real results in terms of symptom management. My underlying disease has been NERD (non-erosive reflux disease, meaning no esophagitis or Barrett's).

The American Gastroenterological Assoc. has guidelines on the management of GERD. They will answer a lot of your questions on the disease, management and surgery.

I don't particularly like the medical industry, and don't want to come off as a pusher of the status quo medical establishment management of this disease. But after five years of lots of research and searching, it is what I most believe in at the present time.
Posted 6/11/2013 3:30 AM (GMT 0)
I am definitely #3. Dealt with ever worsening GERD since 1991. It had gotten to the point of Barretts and double dose of PPI twice a day along with the worse 24 hour PH study my GI had seen, twice as high. My last visit before seeing the surgeon I was told my last option was to double the PPI again or go have the surgery. They highly recommended surgery. So that's the route I went.

Here is my story down and dirty.

www.healingwell.com/community/default.aspx?f=45&m=2337138

Take care,
Bill devil
Posted 6/11/2013 3:33 AM (GMT 0)
I am 18 years old but I am already in the 3rd category. I've gone through all the different medications, natural remedies, and lifestyle changes I can and now I am pushing for surgery. I see how much people stress on this forum that you can't force surgery to happen if it is not right for you, but I am desperate and none of the doctors I have seen believe me when I tell them how much pain I have. I've seen some 50+ doctors in the last 4 years and none of them will even bring up surgery. I assume I probably won't be a candidate for the nissan, but I need to do something because acid is melting my teeth away.

I am trying to do productive research, but there is not much I can find online and I do not have any connections. Eventually I will be working towards a fix, but for now I am still in college studying biomedical engineering.
Posted 6/11/2013 5:05 AM (GMT 0)
I'm a #3. I've had GERD for over 20 years. My heartburn is easily controlled by PPIs. My issue is mechanical. My LES is shot. It just doesn't work. All the PPIs in the world cannot stop nocturnal aspiration. I can manage stress and follow a strict diet, but it's all meaningless. Only surgery can correct my problem. I'm not looking forward to the idea of having major surgery, but I have to weigh that against choking, acid throat burns and ER visits in the middle of the night. I hope I have a smooth recovery and can once again eat foods that I haven't eaten in years. I would encourage anyone reading my post to seek surgery sooner than later. I wasted a lot of years avoiding the inevitable. My reflux only became worse.
Posted 6/11/2013 5:19 AM (GMT 0)
I'm probably between #2 and #3, maybe leaning a little closer to #2. My only real symptoms are voice issues resulting from reflux. My voice gets weak and it's hard to speak loudly, and my larynx ends up hurting quite a bit. I absolutely hate it. I hate having voice problems because it takes away my means of communication, my personality. At the same time, I know it could be a lot worse. I have had significant relief with PPI, but certainly not 100%. Right now I am experimenting with Gaviscon and it seems to be helping. My plan is to get the linx in 1-2 years when either my insurance covers it, or I have enough extra money from my student loans saved up to pay for it out of pocket.
Posted 6/11/2013 11:36 AM (GMT 0)
I'm a #3, been struggling for over 17 yrs with gerd and 2 yrs with lpr. Like everyone else here, I've tried everything, meds, diets, sleep inclined, supplements, all help some but some isn't enough. I continue to fight on, as I'm not certain surgery is the answer. 
Posted 6/11/2013 10:15 PM (GMT 0)
 

acidrefluxman - You said - 4) Barrett's usually appears on first endoscopy or never.

--------

Hopefully this statement is true. I will talk to my GI next week about this.

 

Posted 6/12/2013 3:42 AM (GMT 0)
I had several EGDs before my Barretts showed up and over several years too.

Take care,
Bill
Posted 6/12/2013 8:02 AM (GMT 0)
I think I am between 2 and 3..... my Barretts showed up 16 years ago, 8 yrs ago and 4 years ago but has not done so on last gastroscopy!
Posted 6/12/2013 10:35 AM (GMT 0)
I fall into category 3.

I'm a 59yr old female and opted for the nissen fundoplication in 2006. I was completely satisfied with the results immediatly after the procedure and remained problem free until a few months ago. I am now experiencing a pain that starts as a dull ache and quickly elevates to a SEVERE pain in the area of my stomach/esphagus. That SEVERE pain radiates to my back and lasts between 5-10 mins.  The pain takes my breath, I double over, try to stretch it out, twist and turn until I feel it subsiding. Then it goes away. When I first started having this pain, it would only happen once or twice a month but now it's happening weekly.  I even went to ER last month because it felt like my heart may have been involved; it wasn't. (Thank God). 

I went to the doctor last Friday, who referred me to a GI doctor. I'm still waiting to see him. 

I've read a lot of posts on this subject but unless I overlooked it, I didn't see one describing this sort of pain. I do not have a problem swallowing, no problem vomiting.  I'm curious to know if anyone else has experienced this?

Thank you! 

Posted 6/12/2013 10:56 AM (GMT 0)
One possibility is that you are having esophaegal spasms. Do a search and see if your symptoms match.
Posted 6/13/2013 5:56 PM (GMT 0)
I'm a three for sure. I have breathing problems do to LPR/ Gerd that make me borderline psychotic. It's not uncommon for my to have 10-20 laryngospasms throughout the day and night. My symptoms are stomach burning,upper abdominal pain,heartburn, throat burning, shortness of breath, breathing issues. I feel worse when I have no food in my stomach and it seems like all the diet modifications I make don't help. I've had the TIF procedure done and as a result of that my symptoms have worsen. Also, taking antacids make me worse.
Posted 6/13/2013 6:01 PM (GMT 0)
bmarie,

I have not had a nissen, however I do get sharp pains in my back that seem to pierce straight through my body like a spear getting pushed through me from back to front.

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