Les is right about searching out all options before pushing for (which in my opinion is easier said than done) the surgical route. I had been treated for reflux for 15 years, and my lungs had been getting worse for 6 years.
Your GI docs are working to protect you when they tell you to have patience and give medication a chance to work. Still, from reading your longer post, you have been dealing with this issue for a long time, and while on PPIs you're still struggling.
I remember my first GI doc didn't think that anything but medication was necessary to treat reflux, and he reminded me about the percentage of post-Nissen patients who still require medication. In my research I discovered that while, yes, that was true, when medication was required, the amount of needed to achieve the results expected was much less. This is because Nissen surgery does not take reflux to zero, but rather to a "normal" level. Therefore, people who are especially sensitive (like me and my lungs) some medication might be necessary. If the reflux was taken to zero, the wrap would be so tight that you couldn't swallow.
My asthma doc has requested that I continue to take a PPI before dinner for this reason. My lungs are obviously very sensitive to just a little reflux. I also continue to sleep with the head of my bed elevated. These precautions are working perfectly, and my lungs continue to do well.
Yet, prior to surgery my I was on 40mg Protonix before breakfast and dinner, as well as 300mg Ranitidine at bedtime, and my lungs were dangerously unhealthy. I was forced to take huge amounts of inhaled steroids which did permanent damage to my skin...making it thin enough to tear very easily and covered with bruises. This will not improve, and is why I wish I'd pushed for surgery more aggressively. Oh well...hindsight is 20-20!
I read your longer post, and it explains a lot. I can identify with the weight loss issue. I used to get esophagitis before my surgery and could eat almost nothing because of the discomfort. It would take at least 2 months to recover and in that time I'd generally lose 20 pounds. This would happen a couple of times a year. Also, because of my lung issues, I'd have terrible asthma--once to the point of hospitalization--caused by the increased reflux.
PPIs work fine for most people, but there's a small percentage for whom they're not enough to control the problem. If your LES is open, and you're still getting problems on PPIs, it's definitely time to look into this further.
As Kitt said on the other thread, you need to seek out a different GI group. Don't expect anyone to immediately say that surgery is the answer. You wouldn't want that, because that decision is one that should be a last resort. Do you have a long-term relationship with your PCP? If so, that might be a place to start. I remember when I decided I couldn't stand the cavalier, rude, unfeeling attitude of my first GI doc, I went to my PCP and expressed my feelings. He knew me and what type of GI doc would be compatable with my personality and needs. It worked, and I was very happy with my new GI doc...still, he didn't roll over and say I needed surgery. He did testing, and still wasn't convinced.
This is a long road, as you've already found out. As Les said, this is major surgery and does make permanent changes. If you're suffering the way you have described here, those changes will be a small price to pay for an improved quality of life.
You've got some testing in your future. No decision can be made without an up-to-date barium swallow, a 24 hr PH monitor, and a manometry. Your new GI doc would also likely want to take his/her own look into your esophagus via endoscopy.
My endoscopy never showed erosion. The PPIs I took protected it, but as I've said, not my lungs. If you're still getting erosion, that's definitely a sign that the PPIs aren't working.
Keeping a food diary would provide you with more ammunition when presenting your case. The more anecdotal information you can provide (in writing) the stronger your case.
Are you sleeping with the head of your bed elevated? Since much of your problem occurs at night, that would be very helpful. If you can use bed risers and place them on a couple of 2X6 board squares, it would raise the head of the bed about 7 or 8 inches. That would go a long way toward keeping the acid in your stomach when you're sleeping. You'll get used to the elevation quickly, and it will feel odd to lie flat!
I don't know if you've seen my early recovery journal, but it might give you an idea of what you could expect in he early days post-Nissen. Also, if you scroll to the end of the journal, I've made some comments about surgery in general.
Also, here's a good resource I recently came across:
Good luck with your search for answers!
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.”
Post Edited (dencha) : 10/12/2012 8:02:09 AM (GMT-6)