Yes, another Acid Reflux Thread

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M8
Regular Member


Date Joined Feb 2012
Total Posts : 24
   Posted 2/24/2012 11:23 PM (GMT -6)   
My apologies for the long explanation.

I’m in my late 20s and work as a Mate onboard various ships at sea. I stand a 12-hour watch, which consists of navigation, maneuvering the vessel, and doing paperwork. I also work a fair amount outside on deck doing tasks such as rigging deck cargo, carrying heavy items like ship stores, and maintenance (cleaning, operating, & inspection) of lifeboats and various deck equipment. While at work I can be called upon at any time to perform various safety and lifesaving functions for example firefighting, abandoning ship, and damage control. At home I also have a very physical and active life.

History of acid reflux
- Started getting acid reflux in High School at night just didn’t know that it was acid reflux.
- In 2003 after having heart burn at least 4 – 5 times a week I started on Prilosec OTC. Prilosec OTC it worked for a few weeks but decided to see a general Doctor and he proscribed Protonix 40 mg once a day
- My previous routine was to take one 40 mg tablet of Protonix before bed. Over the years if I had forgotten to take it every 24 hours I would usually get strong acid reflux within 36 hours of taking my last dose
- If eating within a couple of hours or eating a large meal before going to bed and I lie down the food travels up my esophagus into the back of my throat.
- Over the years while taking Protonix depending on when and what I eat I will have to take an antacid to calm the acid reflux. I’ve noticed that it was starting to occur more and more often.
- Last time I was at I work I noticed that I was taking the antacids more often then usual but was able to control it with antacids and once daily Protonix. Eventually the antacid/Protonix combination was not able to control the acid reflux. I increased my Protonix to two 40 mg tablets daily (12 hrs. apart) and have used the occasional antacid to try and calm the acid reflux unfortunately nothing is stopping it. The antacids usually just come back up my esophagus and into the back of my throat. I have cut back to a couple of small meals a day and try to consume just enough water to keep myself from getting dehydrated. When I do eat it gets pushed back into the lower part of my esophagus, with acid reflux, and belching (not large ones but many small ones). The amount of pain and discomfort is random
- Since returning home I went to a Gastrologist and she prescribed Zeroed (40 mg) at night and Protonix (40 mg) in the morning. I’m also scheduled for an Endoscope and Esophageal Manometry

I was diagnosed with hiatal hernia with scaring and damage in the lower esophagus. I try and avoid any type of surgery like the plague. I lead a very active life and my means of supporting myself require that I am mobile and not hampered by any physical limitations. My employer and the Coast Guard require that I pass stringent physicals every couple of years depending on license renewals, upgrades, etc. If I have any type of physical limitations I can easily loose my livelihood with very limited employment. My work and my home life are the exact opposite of someone that works at a desk.

I believe that my acid reflux has reached the point where I may not have a choice on to or not to have the surgery. I also have concerns of taking a PPI for the next 50 years. I would like to be able to have a life where I don’t have to sleep with my head 8” above my stomach, be able to lie on my side or stomach, and not have food and such back up esophagus all the time.

The biggest concerns I have over the surgery are loss of work due to length of recovery, unable to return to work due to not passing the physical, loss of my home life, and fear of complications at sea (i.e. sea sickness, picking up, pulling, pushing on heavy items, firefighting, etc.). I receive a day rate at work, i.e. every day onboard the ship I get paid every day I’m not on the ship I don’t get paid.

Just wanted to hear what everyone’s thoughts and onions are on what I should do.

So far this has been a great forum to hear what peoples stories of pre and post op.

Nickles
Regular Member


Date Joined May 2011
Total Posts : 296
   Posted 2/25/2012 1:37 AM (GMT -6)   
Hi,

You do work very hard. Maybe your physical activities at work contributed to the hernia.

All I can say is explore all your options.
Many ppl here are on ppis and acid reducers. Some may be able to advise you on some you can ask your dr. about.

I am trying natural supplements only but my A-reflux is not as bad as many ppl.
I take DGL and eat an allergen free diet. It seems to help.

But since you have a structural issue "hernia" surgery might have to be considered. I personally feel if it's structural then surgery can fix the hernia. This is my opinion though.

David.

M8
Regular Member


Date Joined Feb 2012
Total Posts : 24
   Posted 3/5/2012 12:58 PM (GMT -6)   
Surprised I haven't had more responses especially with so many people on this Forum with similar problems as mine.

Anyway I just had the Esophageal Motility Study done this morning. I have to say that the difficulty of that test is way overdone. For anyone that has to have to say that the test is uncomfortable but it doesn't last for long. I'm not saying that I want to do it again but if I really really had to do it again I probably would.

I go in for another Endoscope tomorrow and from the looks of it, surgery may be an option for me.

I'm still really concerned about when and if I would be able to return to work after the surgery. From what it appears the surgery is a life changing operation.

speedygerd
Regular Member


Date Joined Jan 2012
Total Posts : 87
   Posted 3/5/2012 4:59 PM (GMT -6)   
Have you looked into the Torax LINX device at all? It's not FDA approved yet, but from the rumors I've heard it will be soon (next 6 months to a year). From my perspective it seems to hold the best promise for a return to "normalcy" as it doesn't have any of the lifting / durability restrictions that the Nissen Fundoplication has.

It also seems to have a very quick recovery time (back to eating normal foods immediately after the operation), so it seems like it wouldn't have a negative effect on your work schedule. It's definitely my #1 choice if it gets FDA approval, etc.

The Esophyx TIF operation also seems viable for you, and may prove to be more durable in the long run - Bruce (who has one) had an interesting reply here:

http://www.healingwell.com/community/default.aspx?f=45&m=2358385&g=2358628#m2358628

At any rate, I hope that helps. I'm in my early 30s and have been struggling with this disease at a similar level of severity to you! Here's to hoping we both find a good solution to our problem!

Lucas

Silas1066
Regular Member


Date Joined Feb 2012
Total Posts : 36
   Posted 3/5/2012 10:05 PM (GMT -6)   
M8: I have many of the same concerns you do.

What worries me about the standard Nissan surgery is not being able to burp or vomit ever again. That can't be good.

I work out 5 times a week, and I worry that strenuous exercise would damage the surgical work, or undo what was done.

I have an endoscopy scheduled for the 20th, so I guess I will find out more then.

I have only been on Prilosec 40MG for 5 weeks now, so it is still pretty early for me.

M8
Regular Member


Date Joined Feb 2012
Total Posts : 24
   Posted 3/5/2012 10:32 PM (GMT -6)   
My Gastro doesn't recommend the TIF because in her words they are falling apart.

The LINX is a very exciting new technology. I hope that it finally receives FDA Approval soon. The problem with it is from what I've heard is the patient's heital hernia has to be less the 3 cm and I believe that mine is 4 cm or greater. If I am a candidate for it I will surly try that long before the Nissen. The concept just makes common sense.

Silas1066, if you've just gotten on Prilosec you've got a long ways to go before the Nissen. From my experience it is a slippery slope. You start with Prilosec, then Protonix, then Nexium, the Zegred.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 3/5/2012 10:36 PM (GMT -6)   
Re: Vomiting and Burping
I had the Nissen surgery three years ago and can burp and vomit.  It's not an automatic that you won't be able to do either.  Burping is definitely different than pre-Nissen..it is more at the whim of your stomach, but burp it does.  I had two stomach bugs in the last three years, and vomited both times.  The thing is that you should try to avoid vomiting, as it can be hard on your wrap.  I always keep anti-nausea drugs handy and took them as soon as I knew I was at risk.
 

M8
Regular Member


Date Joined Feb 2012
Total Posts : 24
   Posted 3/6/2012 9:50 PM (GMT -6)   
Had the Endoscope done this morning. All went well but did find out some interesting news though. I've had two previous Endoscopes done over the past few years. Mostly to determine if anything odd was accuring. Anyway my past Endoscopes showed a Heital Hernia of 4 cm with scar tissue located in the lower esophagus. This time my Heital Hernia was 2.5 cm and there wasn't any damage to the lower esophagus.

Has anyone heard of a Heital Hernia decreasing in size and prior scar tissue disappearing? Why would my Heital Hernia be smaller but my acid reflux that much worse? What has caused this drastic change in my acid reflux in such a little amount of time?

After I woke from the anesthesia and was coherent I had a million questions I needed answered but the Doctor wasn't willing to discus anything till the results from the samples returned in 3 weeks. I found this out as I was being put in my car. I had my girlfriend who was driving me home turn around and I went back in to discuss my questions with the Doctor. She was busy and was unwilling to discuss anything because she claimed I wouldn't remember anything. I had my girlfriend with me and even if I didn't remember anything she would be able to remind me. Its been over 12 hours since I had the Endoscope and I still remember the entire conversation with the Doctor.

One question she did kind of answer was she doesn't know if I should have the surgery done because of my work. I'm young and have many years of very intense physical activity left. Either I'm busy doing physical work at work or at home. If I have the Nissen done when and will I be able to lift 80+ lbs?

Well I still have a million questions and from the beginning I have not really had any definite answers.

Has anyone else gone through all the test and had to wait 3 weeks before their Doctor would discuss anything with them?

M8
Regular Member


Date Joined Feb 2012
Total Posts : 24
   Posted 3/12/2012 8:40 PM (GMT -6)   
Followed up with the doctor today. Bad News!! I have low esophageal motility so she rulled out the option of surgery.

She doesn't know why I have such bad reflux. The endoscopy showed that my esophagus doesn't have any scarring, looks completely normal, and I have a small (2 cm) Heital Hernia. She says everything about me is completely healthy and normal so once again she still doesn't know why I have such bad reflux because.

She also rulled out having an excessive amount of Acid because the combination of Protonix and Zegred has reduced my stomach acid to nothing. Every time I eat I can feel the food sit in my stomach and do nothing.

She changed my meds to 30 mg of Prevacid in the evening and 60 mg of Dexilant in the morning.

I just had a bowl of chicken noodle soup and once again I have acid all the way up the majority of esophagus.

Its really starting to be a pain. My diet is down to a beagle and 1/2 cup of oatmeal for breakfast followed by heart burn, turkey sandwich for lunch followed by heart burn, and soup or something similar for dinner once again followed by heart burn. This is starting to become really miserable. I'm young and hopefully have many years ahead of me. From the looks of it I'll be in pain 24/7 for the next 40 or 50 years. I'm dying for any type of solution.

Please if anyone has any suggestions please help!

Marcello
Regular Member


Date Joined Feb 2012
Total Posts : 75
   Posted 3/13/2012 7:31 AM (GMT -6)   
Hi M8:

1) Your doctor should be aware that getting objective evidence from a patient describing reflux symptoms from endoscopy, manometry and barium studies alone is unreliable. They have poor sensitivity, relatively. The way to do it is with 24-hour pH or impedance studies.

- Barium swallows just capture an immediate and potentially largely unrepresentative snapshot of you drinking a liquid while standing upright (maybe tilting if you're lucky). As a realistic representation you wouldn't get a less reliable result if they X-rayed you juggling while wearing a clown suit. They work well if you had absolutely no esophageal sphincter tone whatsoever, plus they can capture other disorders like achalasia.

- Manometry just tests esophageal pressure.

- Endoscopy can show hernias and a some other conditions but they certainly aren't a good tool to test the presence of reflux. Having a healthy esophageal surface in no way proves a lack of reflux. Just that the surface hasn't become meta/dys/neo-plastic. Some people reflux a lot without scarring. Some scar with apparently minimal reflux. Some haven't scarred because whaddaya know the PPI tablets have protected the esophagus.


2) The advice of 'ruling out' surgery due to low esophageal motility is outdated. Numerous anecdotes but here are a couple of studies both of you may want to read:

Prospective study: http://www.ncbi.nlm.nih.gov/pubmed/16643177
Retrospective study: http://www.ncbi.nlm.nih.gov/pubmed/19172353


3) Sounds like you may have some delayed gastric emptying (gastroparesis), not uncommon in those with abnormal esphageal motility. Again, there is some small but encouraging evidence that surgery in fact enhances emptying, eg:
http://www.ncbi.nlm.nih.gov/pubmed/9927124


If you've adopted all lifestyle measures (lifting head of bed, avoiding trigger foods, delaying lying down after oral intake etc) and despite maximal medication therapy you still haven't found relief your solution is straightforward:

A) You certainly warrant either Impedance or 24-hour pH study. I imagine this will show what you know already.
B) Assuming the above, you will then have surgery to repair the hernia and have a Nissen's wrap (or a partial one if your surgeon prefers). From my understanding the Linx procedure needs a decent degree of esophageal movement.


Get on the case fast and don't delay the steps you need to get the surgery you sound like you warrant.

Post Edited (Marcello) : 3/13/2012 7:44:31 AM (GMT-6)


M8
Regular Member


Date Joined Feb 2012
Total Posts : 24
   Posted 3/20/2012 10:22 PM (GMT -6)   
Ok, a lot has happened between the last time I posted and now. It may take a couple of posts.

Went to a different Gastro to get a second opinion. New Doc said that surgery may still be an option but would have to be a 270 or 180 wrap instead of 360 but with a reduced wrap they are usually reduced results. He is waiting for the graphical results of my motility test to come in so he can make a better opinion because he only has the dictation. Interestingly enough the dictation said that I don't have week esophageal muscles but that they are slow if that makes sense.

The new Doc is also helping me get a referral to a specialist in esophageal surgeries located outside of my state. We've decided to put off the 24hr ph test till later but will definitely do it to confirm that its actually reflux because if it isn't reflux the surgery isn't going to help.

Ok, so after meeting with the 2nd Gastro the 1st Gastro had me do a ultrasound of my gallbladder and a chest x-ray. Durning the ultrasound they went ahead and did all of the organs in the area. The chest x-ray came back as normal but the ultrasound showed a cyst on my pancreas. Not much detail on what a cyst on the pancreas is or does but I'm lined up for a CT exam and blood work for enzymes.

My reflux is definitely still there after every meal but my meal options are starting to open more and I'm able to do many normal things that I enjoy.

I greatly appreciate everyone's help and assistance.
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