My Journey

In November 2010, my dentist noticed some acid damage on my back teeth. She asked if I was “refluxing” at night. In retrospect I should have been more concerned. I started taking TUMS at night but didn’t pursue anything further. In January 2011, I started to notice that if I did my exercise workouts shortly after eating, food seemed to “come up”. By February 2011, I had “heartburn” symptoms and by March 2011, some foods and liquids started to “burn” going down. I underwent EGD (upper endoscopy) and could see them myself on the scope–ulcers in my esophagus near where the esophagus meets the stomach.

I started a strict regimen of disciplined eating (small meals, eating on a schedule, avoiding acid trigger foods and eating too close to bed time), elevating the head of the bed, and a once daily proton pump inhibitor (PPI). All of that helped greatly in terms of symptoms. But in the back of my mind, I thought about my grandmother, who had died of esophageal cancer–diagnosed too late after years of Rolaids. I thought about a friend who had developed esophageal cancer while on PPI’s. He considered himself “the luckiest guy alive” because his cancer was caught early. I knew that Barretts esophagus was becoming more common. Beyond the statistics, it seemed that more and more of the occupational medical records I reviewed included Barretts in the patient’s conditions. (Later in my journey, a family member and three friends were diagnosed with Barretts, while taking PPI”s).

In June 2011, along with friends, my husband and I enjoyed a marvelous trip to Alaska. But while traveling for 3 weeks in different accommodations, there was no way to elevate the head of the bed and I wasn’t yet traveling with a slant pillow. Shortly after we returned, I developed a nagging cough. My voice became hoarse, increasingly. After more evaluation, my gastroenterologist and I concluded that “extra-esophageal reflux” (also known as laryngopharyngeal reflux–LPR, or “atypical reflux”) was now part of the picture. I started taking PPI’s twice daily and continued the other lifestyle changes. Again, all of that helped significantly. By fall 2011, my symptoms were reasonably well controlled but not fully so.

At that point, I took the initiative in considering surgery. My GERD symptoms were manageable but controlling them impacted nearly every activity in my life. I had (and have) reason to hope for decades more of life. I had become concerned, increasingly, about the long term risks of PPI medication and esophageal cancer.

The main surgical option available at the time was the Nissen fundoplication. Even in this day of advanced science in prosthetic limbs and heart valves, progress in mechanical solutions to GERD had not advanced nearly as far. Some innovations had held promise, but hadn’t developed as hoped. My exploration of the Nissen included consultation with two gastroenterologists and two surgeons (I sought a second opinion) and discussions with a medical school classmate surgeon and with three colleagues who had undergone the Nissen and were pleased with the results. I learned about the drawbacks. I concluded that in the hands of an experienced surgeon, I would have a good chance at achieving good results and that likely, on balance, I could deal with the risks and the side effects.

While I was considering the Nissen, and leaning toward going ahead, I did more research and learned about previous U.S. trials of magnetic sphincter augmentation. I found the idea of a magnetic bracelet augmenting my natural valve intriguing and wanted to know more about the status of the device and to determine if I would even be a candidate. I reached out to the device company and to one of the surgeons who had participated in the FDA trials. At an evaluation at Mayo Clinic Jacksonville in December 2011, I received mixed news. The good news was that I was a candidate for the LINX device. The challenge was that the FDA had not yet approved LINX for market and there was no way to predict if and when that would occur. I saw no harm in waiting for a while and my Mayo team concurred.

On April 10, 2012, I entered the learning curve. Following surgery, the main dietary instruction was to eat normally so that the device would open and close during the healing process. I stopped taking PPI medication immediately. My love of food returned. I started solid food a few hours after the procedure. I 86’ed the slant pillow. The day after surgery, I enjoyed a favorite small chocolate dessert for the first time in forever–with no GERD symptoms. After that it was tomato sauce and after that barbecue…and no GERD symptoms. And no LPR symptoms. Within a few months, my voice started to come back full and strong.

The recovery was not without its challenges. About two weeks after the procedure, I had some definite discomfort swallowing and a couple of episodes of food coming up from my esophagus. It wasn’t fun, but I noticed that what came up didn’t burn like stomach contents would, so what did get to my stomach was staying there. The discomfort and regurgitation resolved quickly.

After several wonderful months, the swallowing issues discomfort returned, along with some other unpleasant experiences, including pain and a food impaction—food got “stuck” temporarily in my esophagus before finally going down. Testing showed that the most likely problem was esophageal stasis and lack of clearance. What was getting to my stomach was staying there, but not all of it was getting there promptly. At the time, this was very distressing. Later, I learned that my experience was similar to that of other early post approval patients. The solution was making dietary changes to prompt better esophageal peristalsis (movement to get food from my esophagus, through the device, and into my stomach) and to absorb the residual food acid in my esophagus. I followed my surgeon’s recommendations. Also, I kept a food diary and identified additional changes I could make.   Surgeons and gastroenterologists know much more now about the post-LINX esophageal healing process and about how to reduce and deal with these problems. Dietary recommendations to patients have become more specific than “eat normally”.

At two years after surgery, I remained 100% free of GERD symptoms and off PPI’s and topical antacids. Often, folks asked, “If you had it to do again, would you choose LINX?” Always, the answer was “yes”! I had no reason to think I’d be making a decision about reflux surgery again. I didn’t know that my recurrent recovery problems signaled trouble. To me, they were background noise compared to freedom from the reflux tyrant. I’d undertaken a new writing project–I wanted to tell the human story of  those whose thinking and labor bore the fruit of a revolutionary new GERD treatment. I started to interview the scientists behind the magnets. One of them was Dr. Tom DeMeester.

Keenly observant, Dr. DeMeester watched me eat. He expressed concern about the tiny bites I took and how slowly I ate. He didn’t think those adjustments should be needed nearly two and a half years after surgery. “You may be doing well because you’re compensating”, he told me. “But that esophagus just isn’t emptying”. Dr. DeMeester urged me to get back to my gastroenterologist and to consider a dilation (putting a balloon into the esophagus and expanding the balloon, to break up–from the inside–the scar tissue around the LINX.)

In October 2014, I had the dilation. It helped for a while–I could eat larger bites and complete meals at “slow normal person” speed. But then food started to come up and I started having pain after eating, along with sore throats and a hoarse voice. More testing followed. In total, following my original surgery, I had four EGD’s, three barium swallows, and two pH tests. The upshot: My LINX was sitting two low, around high stomach instead of at the junction of the esophagus and the stomach. Two gastroenterologists and one surgeon had noticed  a rim of stomach above the LINX on all of my post op EGD’s but as long as I seemed to be doing well it wasn’t an issue. However, as time went on and the dilation uncovered, my LINX  was acting as an “outflow obstruction”. Everything was too slow getting down–food, liquids, and the food, acid, and bile refluxed from my stomach and “captured” on its way back down. Restarting PPI’s and going back on an antireflux diet helped the reflux capture symptoms, but didn’t eliminate them. And after coming through all of this, that wasn’t be a long term solution for me. So it was time to think about surgery–again.

Options available included removing the LINX and observing before making any further surgery decision, converting the LINX to a Nissen, and surgically revising the LINX. After extensive conversations and much prayer, I chose LINX again. On August 12, 2015, in a 3 hour operation, Dr. John Lipham at USC took apart the scar tissue from my first surgery, removed my original LINX and replaced it with one positioned correctly–in one procedure, with Dr. DeMeester in attendance to consult. Dr. Lipham did two EGD’s during surgery to be sure the LINX is in the right place.  I’m now approaching ten weeks after surgery and doing well. This recovery course is different already. My swallowing issues started early–food literally got stuck a couple of times in the first two weeks. I’m following the dietary instructions that weren’t yet integrated into practice when I had my first LINX–eating every 2-3 hours as “LINX physical therapy”.  I’m not yet where I hope to be but Dr. Lipham and I are pleased with the forward progress. Each week, my swallowing continues to improve. I’ve had no reflux symptoms and no food coming up. I’m  tapering off PPI’s with no difficulty and I can enjoy food again, even tomatoes and chocolate! I’m eating increasingly normal size bites each week–with some discomfort but that has started to lessen. I’m able to move into more exercise and my husband and I are looking forward to more travel.

I’m happy to keep folks updated–in the GERD community we are all learning together!

 

 

 

 

 

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4 thoughts on “My Journey

  1. I saw your post on our website. If you would like to “author” a story about your experience we would be happy to publish it and provide a link back to you blog. Glad to hear that you are free from GERD symptoms!

    Bruce

    • Bruce,
      Thanks for all the GERD patient education and advocacy you’re doing through RefluxMD. Definitely, I’m honored to contribute my story and will do so soon.

  2. I’m glad you’ve chosen to share your journey with us readers and fellow GERD sufferers. I also have been diagnosed with GERD along with and IBS/occasional gastritis which I believe are somehow are correlated. I started with occasional acid reflux 10 years ago then bad IBS/ gastritis 7 years ago then GERD 1.5 years ago. I’m 38 years old and the first gastroenterologist I saw said I was to young for all these problems. Now it’s gotten to the point that I have a burning sensation in my esophagus and upset/warm stomach more often then not. I consulted with Dr Lipham, took all necessary test, Bravo study, ect. ect and finally got my medical insurance to cover the procedure. I changed my diet, tried juicing and used elevated/wedge pillows to no avail. I’m hoping that this will finally put an end to my GERD and my IBS/gastritis. From your experience do you think there is a correlation between my GERD/IBS/Gastritis?

    Again,Thank you very much!

    Humberto

    • Humberto,

      I’m glad you are taking charge of your health. No one is too young to have serious GI problems. I’m not a gastroenterologist but in my own experience many people with GERD also have gastritis, as I did. I’m not sure about IBS, but often getting one part of the GI tract working properly will help the others as well. I wish you the very best on your surgery–I know what it takes and will keep you in prayer.

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