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Old 05-06-2012, 07:11 PM   #1
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GERD - 36yr old and new to this awful disorder. What to do?

Hi everyone,

Thanks for taking the time to read my post.

I'm a 36 yr old male and I have really bad acid reflux. I had my thyroid removed due to thyroid cancer in 2010 and was doing fine. Acid reflux would only happen once in a blue moon. Then I decided to have the radiation treatment january 12, 2012 to rid myself of any future thyroid cancer and this is when the issue of acid reflux started to ruin my life.

Immediately after the treatment I noticed that my reflux was getting worse, and fast! About two weeks later I had my first major reflux attack. It was a combination of aspiration into the lungs and burning in my esophagus. It was so painful that I literally thought life was going to be over, and that I would take a few steps and keel over. Nothing would help until I was given nexium 40 mgs to take before bed. After three painful, consecutive attacks and a few weeks, I went the to my GI and had a barium swallow, which came back saying I have spontaneous esophageal reflux disorder, and then an upper GI, which came back confirming GERD and a small hiatal hernia.

By the time the test were completed and bacteria and cell mutation were cancelled out at this time, I was concerned about the raspiness in my voice, to which the dr said to double up my pip's to 40 mgs twice a day for 4 months. I'm currently in my first week of double the dose and I feel better during the day, but sleeping is now something I dread. I still wake up with acid taste in my throat at least 1 -2 times a night every night, and the feelings that liquid is always coming up keeps me sleepless and miserable.

One of the other things that sticks with me is that my uncle died from esophagile cancer and this all has me a little on edge with respect to taking the 'let's see what happens' approach.

I talked to my GI about the fact that this is a LES issue and that I would like to know about Nissen. She said I was too early in the process for that, but I told her that I cannot live like this knowing that I may be damaging my esophagus and taking drugs that aren't really fixing the problem.

I chronically burp and hiccup all day, everyday and it's getting really annoying. I don't find too many Things that cause the flare up other then dark beer. It's more the feeling that my LES is so weak that it can't hold tight enough to keep the liquids down. But then again, I am on ppi's.

I will be going back to the GI for a ph and pressure test later in the year as the next step, but any advice from people who have had Nissen, and their perspective, would be greatly appreciated in addition any comments you would like to share

Some members have been kind enough to already give some advice in GERD and how to deal with it, but any perspective on this topic of surgery and living with GERD, to what the side effects of taking ppi's are, would be greatly appreciated.


THanks

Last edited by Stockster; 05-06-2012 at 07:20 PM.

 
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Old 05-06-2012, 08:12 PM   #2
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Re: GERD - 36yr old and new to this awful disorder. What to do?

Side effects of PPIs: A few people notice bad side effects right away, commonly nausea or bowel irregularities. Most people have no short-term side effects.

In the long term, they can cause osteoporosis, as they can interfere with nutrient absorption. Also, about half of people will experience "rebound" when quitting, that is, the body will produce too much acid for 1-2 months after stopping the drug.

Again, Barrett's esophagus and esophageal cancer are relatively rare complications of GERD (only about 1% of Barrett's cases become cancer) and usually seen in people who've had uncontrolled heartburn for decades. Pursue it, but don't stress about taking a few months to figure out the best treatment. I'm glad I had the surgery, but I'm also glad I didn't rush into it.

 
Old 05-07-2012, 01:57 PM   #3
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Re: GERD - 36yr old and new to this awful disorder. What to do?

Hi Jane,

Thanks for your note. As I read around this board I see that I also may need to consider LPR (I think that's the upper esophageal sphincter right?

Also, what is involved with this Ph and pressure test. Other than being uncomfortable, is it a painful procedure? Do we need to come off the ppi's to show how bad the acid is?

 
Old 05-07-2012, 02:47 PM   #4
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Re: GERD - 36yr old and new to this awful disorder. What to do?

For manometry, they put a catheter into your esophagus while you are awake, and you have to swallow against it. It's not fun, but it's not the worst thing.

For pH monitoring, you need to come off all medicines for a week or two beforehand. (Mine was postponed, so I was off, cold turkey, for almost a month. Oh, that was FUN.) The test itself wasn't bad, though. I had a Bravo capsule implanted in my esophagus while I was napping. Then for two days I carried around a little box that recorded the pH. The capsule eventually detaches and leaves your body through the digestive tract. I had a little discomfort at the site of the capsule for the first few hours, then I got used to it and had no more discomfort.

 
Old 05-07-2012, 05:40 PM   #5
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Re: GERD - 36yr old and new to this awful disorder. What to do?

Hi Stockster:

Welcome to the boards. Sorry to hear about your awful experience with reflux. I remember when I was first diagnosed that I developed a bit of bronchitis even and had to use a nebulizer for a short time until the GERD was under control. I was fortunate that mine responded well to the Aciphex and I was symptom free for nearly three years.

My GI doctor said once a refluxer always a refluxer. I weaned myself off PPI's three years ago, and managed OK for about two years with symptoms here and there and the use of Zantac. I started experiencing symptoms about six weeks ago, and have not been able to get them under good control this time.

Esophageal cancer and Barrett's are rare. However, I am undergoing my second endoscopy tomorrow because my symptoms are not under good control this time around and I want to rule out a possible malignancy.

There are some natural remedies that may help soothe your esophagus while the PPI's kick in. I have tried DGL, aloe vera juice, apple cider vinegar with honey diluted in warm water, etc. All have helped some, but none provide a "cure."

I also use Melatonin every night and have restricted the use of carbohydrates to about 40 carbs per day. That is a very small amount, but it seems to keep my heartburn in check.

Please, keep us appraised of your progress. There are many "old timers" and members with lots of experience on these boards. Hopefully, someone will have information that is helpful to you.

I spent hours reading through these boards when I joined a few years ago.

Wishing you a speedy recovery, or at least that you start feeling better very soon.

Rose

 
Old 05-07-2012, 10:15 PM   #6
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Re: GERD - 36yr old and new to this awful disorder. What to do?

Rose.

Thanks for your kind words. I hope that your tests come back clear.

Although new to the board, I have been researching alternatives to deal with the reflux. I too take melatonin to sleep (6 mgs) at night but I still wake with the sour taste of acid in my throat every night. I have tried the honey and apple cider vinegar with little success. All these experiments over ther last few months are making the reality that this is a life long curse I will have to learn to manage.

I thought that thyroid cancer was going to be the thing that scared me, but I realize that now this new disorder is much worse, at least in my short experience. The fact that now dread sleep and inevitable tast of burning... I'm concerned that the double dose of ppi's will only slightly sooth the liquid coming up my throat, and that taking a drug to alt my natural bodies acid levels does not seem right. I know I have to consider all options when considering Nissen, but to me I kep thinking that this is the only true fix.

I'm miserable with this GERD, and I feel that life is about quality, not quantity... If successful, the surgery have a lifespan of 10 years+, and at this point I think it's is a reasonable step.

I truly don't know how people can live with this. How I can live with this. But again, I am new, and the challenge of finding balance is daunting to say the least.

Just venting as I can't sleep.

 
Old 05-07-2012, 10:18 PM   #7
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Re: GERD - 36yr old and new to this awful disorder. What to do?

Rose.

Thanks for your kind words. I hope that your tests come back clear.

Although new to the board, I have been researching alternatives to deal with the reflux. I too take melatonin to sleep (6 mgs) at night but I still wake with the sour taste of acid in my throat every night. I have tried the honey and apple cider vinegar with little success. All these experiments over ther last few months are making the reality that this is a life long curse I will have to learn to manage.

I thought that thyroid cancer was going to be the thing that scared me, but I realize that now this new disorder is much worse, at least in my short experience. The fact that i now dread sleep and the inevitable tast of burning... I'm concerned that the double dose of ppi's will only slightly sooth the liquid coming up my throat, and that taking a drug to alter my natural bodies acid levels does not seem right. I know I have to consider all options when considering Nissen, but I keep thinking that this is the only true fix.

I'm miserable with this GERD, and I feel that life is about quality, not quantity... If successful, the surgery have a lifespan of 10 years+, and at this point I think it's is a reasonable step.

I truly don't know how people can live with this. How I can live with this. But again, I am new, and the challenge of finding balance is daunting to say the least.

Just venting as I can't sleep.

 
Old 05-08-2012, 07:34 AM   #8
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Re: GERD - 36yr old and new to this awful disorder. What to do?

This is a good place to come and vent.

What I have found out over the years is that I have better and worse phases. Hopefully, you and your doctor will be able to get this somewhat under control so you are not so uncomfortable, particularly at night.

I am fortunate in that I seem to get most of my symptoms during the day.

I usually sleep on pillows and on my left side, which helps with the regurgitation.

I used to dream of a "cure" but I don't think there is one on the horizon, except surgery and that has its downfalls.

Keep us posted of your progress.

Rose

 
Old 05-08-2012, 08:12 AM   #9
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Re: GERD - 36yr old and new to this awful disorder. What to do?

I'm with you on the 'depends on the day' scenario. Today i feel much better. No excessive burning last night, even though I was up 3 times. But there was definitely SOME rest. I tried elevating my bed again (4 inches) plus pillows, and it worked better. I still woke with the thick dark green phlegm coming up for an hour, but it could be worse.

I have a question. Now that I can think straight, I would like to ask a few more questions about PPi's. I'm on 40 mg pills twice daily and I'm going to try this for 2 weeks straight. I have read that some people post that once you get the symptoms of gerd in check, that you can reduce your intake amount of the ppi's. Has anyone experienced this? I would much prefer to go on 20mgs once a day, but I'm not sure if that's not realistic considering my 'spontaneous reflux' diagnosis.

Sleeping on my left actually loosens my LES to where I can feel the immediate burping from any air I just swallowed. The good news is that when I'm on my right side it doesn't seem to happen.

Have a good day everyone.




Sleep is so invaluable.

 
Old 05-08-2012, 09:41 AM   #10
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Re: GERD - 36yr old and new to this awful disorder. What to do?

For me, honestly, I've never been able to just lower the dosage on my PPIs. Not only am I one of the "lucky" half of people who develop dependency, I seem to develop it particularly quickly.

Other medicines, I can take them or leave them (that is, take them when I need them, leave them when I don't.)

 
Old 05-08-2012, 10:47 AM   #11
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Re: GERD - 36yr old and new to this awful disorder. What to do?

I was able to function very well on 10 mg of Aciphex for a long time (20 mg is the usual dose).

Right now, I am back on 15 mg of Prevacid OTC in the AM and a Zantac (150 mg) at night. We will see depending on the results of the endoscopy I will be having in about two hours. I may stay on that or need to get on something stronger.

My problem now is that the Aciphex, even at twice a day 20 mg, is not working, and the Protonix I tried gave me an awful burning sensation (or maybe I was having a horrible day that day).

I am glad you are having a better day today. It seems to go in cycles for me.

Got to get to the doctor's office...to be continued.

Rose

 
Old 05-08-2012, 08:10 PM   #12
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Re: GERD - 36yr old and new to this awful disorder. What to do?

Hi Rosebloom,

Let us know how your scope went today.

With respect to your dose, I'm not sure what all the ppi drugs are and the potencey relative the severity of reflux, but I was on nexium 40 mgs x 2 daily, but now I'm on a drug called Tecta (with the same dose). I find that this new drug doesn't give me all the gas that Nexium did, but maybe you can try it. Instead of what you mentioned earlier yu we're on.

There seams to be a slew of ppi's to choose from. Oh to know which is right for me.....

Let us know how your appt went

Have a good night

 
Old 05-09-2012, 07:45 AM   #13
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Re: GERD - 36yr old and new to this awful disorder. What to do?

Appt. went well. The whole procedure took twenty minutes from the minute they put me down (used Propofol or the Michael Jackson anesthetic)to when I woke up. She said all looked "normal" except for a portion of my stomach that looks irritated. She took biopsies all over and I will not know the results for about a week. She told me cells can undergo microscopic mutuations and that is why a pathologist needs to look at them to make sure there is not the onset of something like Barrett's or cancer, etc.

Thank you for asking. I will keep you all posted when I hear the biopsy results.

Rose

 
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