Question for People Who Have done pretty well without surgery

I have recently found some relief...though i am not sure exactly what it is specifically that is helping.. have been on dexilant for 2.5 weeks, completely altered what i eat and drink and have been taking slippery elm for 1.5 weeks... I feel 80% better than I did even a week ago... i have had no milk, chocolate, caffeine, coffee-only 1 cup of decaf a day, nothing fried, greasy, or spicy. I am going to slowly add some things back to see what my trigger(s) are..though I anticipate I may never be able to have carbonated beverages again. My diet previous to this was lots of coffee, lots of diet coke and lots of chocolate..I ate whatever, whenever..not a healthy eater by any means. Have never liked alcohol of any kind however..

Hey Stacey, I am being weaned off of PPI's in preparation for all those fun tests Dr K is going to do. She wants to get a clear view of what's going on with me and I guess the PPI's mask some of them.

NOTHING works for me. Plus I just read that the coughing with LPR is super complicated and subtle and surgery doesn't work for it. It seems to me that I'm doomed.

I am DYING for chocolate. Thank God for Fig Newtons!!! they keep my cravings under control

As for my social life it's the first time i've been anywhere in weeks and I will probably not do much in the future. It was very uncomfortable. Like VERY.

Also I'm so self absorbed, always anticipating the next coughing fit, always worrying about what i'm going to eat....just distracted and that's the worst place to be! hopefully I can fix at least that.

vI discovered that i can....you can have figs and the cookie part I think is whole grain. I don't know but i can totally eat them and they are life savers.

I don't have a sore throat.... i think it's just a tiny bit of reflux that goes just high enough to mess me up.

I have been struggling with GERD for a while now, but the last 9 months I have really gotten strict and serious about it. At first the social situations would be hard and depressing, but I have found ways around it. I certainly am not as active socially as I used to be but I refuse to allow GERD to isolate me. I typically bring my own food places or eat beforehand. And I try to remember that while everyone else gets to eat junk food that is not good for them, I am eating healthy and in turn it will pay off better in the long run. I have found some substitutes for things that I can no longer eat or drink. It still is annoying but I remain hopeful that there may be better treatments available in the future.

I said this on another thread, but you caught me on a good day lol! There are some days where I am down and negative but that never helps so I try and look at the situation as realistic as possible and try to adjust to improve my quality of life. I try and just take one day at a time instead of worrying too far in advance. The one thing I do worry about is pregnancy as I am 30 and would like to have children, but I am afraid my reflux will be worse. Ugh. GERD.

LPR is a more serious and persistent than normal GERD. The upper part of esophagus is more delicate and vulnerable, and once hurt, takes a longer time to heal. So dietary modification for LPR management tends to be stricter than GERD. This often clashes with some lifestyle choices. I think change of mindset is important here. There isn't any medical management that is good enough to allow the patient to continue with their ilfestyle choices and still maintains healing.

Interesting that not a lot of folks show up here commenting how well they have done without surgery. I am sure those who have probably don't frequent the BB's though.

I have had LPR for the last year and finding success with a combination of PPI's, lifestyle and a lot of self discipline when it comes to what I can eat however it doesn't cure it. I do understand most of my trigger foods now. The moment I step outside the lines as most of us do over Xmas etc. it all comes back full force. Seems to me the only permanent cure (if your one of the 80-90% that it works for) is thru surgery. Intend to pursue it with my Gastro doc next week when I see him for a follow-up visit. Don't want to take pills , restrict myself day in and day out for the rest of my life. I have found that the drug Baclofen as a supplement to the PPI's has helped me. It reduces the random sphincter relaxation associated with LPR. There are quite a few clinical studies that support this. This suggests to me that my LPR is somewhat related to my nervous system. Probably why caffeine causes so many problems for us sufferers as it stimulates the system. Baclofen unlike Clonazepam , Xanax etc. isn't addictive and doesn't have the issues that these drugs do regarding side effects. It is a Gaba-B antagonist. For me I don't even know I am taking it as it seems to have no side effects accept it seems to work. The first two days it made me a little tired but that went away. A allergist on another reflux BB suggested I try it as he had good success with it. My Gastro doc agreed and it does seem to help a good deal. However step outside the lines for a couple of days and it all comes back.

With surgery a couple of months of recovery and a bit of suffering seems a reasonable offset to this which never seems to end. I'm pretty sure taking PPI's and Baclofenac , tums etc.. for years can't be anymore healthy for me than the occasional sweet or coffee maybe a lot worse.

I always ate healthy, wasn't overweight , worked out, took care of myself. Seems I have just have some bad genes related to this disease. My mother suffered with issues as well. I am 55 and in that age zone for this to show up. There are worse things to have but if surgery can fix it then sounds like the option I will choose.

Wine is a no for me, but I can handle cocnut rum and water once a month. Especially if I use high PH water. Other than that I stick to my diet. There are ways around things, my dad has made a great cookie that is low in fat and gluten free and non acidic. The soy ice cream is low in fat and delicious. I am still learning. GERD is getting more and more common and I am convinced it is the food with all the additives as well as the diet high in acid.

I had to try a lot of PPI's before I got one that worked and it did take time. Truthfully if you don't change the things you eat though, lifestyle changes, even small things like watching your posture (any pressure on the stomach creates LPR for me) the PPI's won't stop it.

There are a lot of gimmicks out there, a lot of folks will run to the nearest supplement store and load up on DGL, Aloe Vera etc, etc.. When they get serious about diet and do the right things, maybe some of these actually help in combination but not for me. Tried them all. There is no magic pill.

It is a pretty simple disease for most, the esophageal sphincter just isn't doing it's job for whatever reason. Lowering the acid in your stomach whether thru diet or PPI's creates less damage when it splashes up or is mixed with the air but doesn't do a thing about the problem in the long run. That's why surgery works for most. Heh none of us live forever , there is a reason why as we age that our body starts to fail us, the sphincter is just a sign of that aging for many, for others it may be an immune system that can't fight cancer. Count our blessings, do what you gotta do, for me I think surgery is the next best option.

I think there a lot of folks that get relief from PPI's and the damage done to the esophagus heals but I'm not sure about the sphincter itself healing. I suppose if there was actually erosive damage done around the sphincter that could heal , the muscle or muscles that keep the sphincter closed though doesn't seem a likely candidate.

My doc tells me that there are some unknowns as to why the sphincter quits working well , like it did when we were younger. One thought is the nervous system that controls it starts to do some funky things causing it to open randomly allowing acid to move up. That may be why it happens often when were are relaxed and sleeping, of course gravity isn't helping then either.

If you think about it our nerves cause it to open when we swallow as the system sense food passing down , so there could be issues for some of us that they tell it to relax it when they shouldn't. It also makes sense that like a lot of muscles it loses some strength with age so a little looseness can cause big issues as acid comes up. Maybe a combination of those factors.

Johnah - I never thought about posture. I just came back to work from the holidays and my symptoms seem to be worse here. And I have terrible posture when I am sitting at my desk! Something to think about.

The cause of GERD is still unknown but I do believe that there is some kind of nervous system dysfunction. I wish I could just talk to my LES and tell it what to do! But there are more and more young people getting it. I am hearing more and more teenagers being diagnosed. I was diagnosed when I was 22 and I am 30 now. Nexium is one of the most prescribed medications in the USA. Obviously something is going on.

Posture is very important. It is hard to get in the habit of sitting up straight, but it does help. I am a therapist and I do a decent amount of sitting and sometimes I do catch myself in bad posture. Also, try not to bend over. I tend to bend at the knees while keeping my back straight. Just something that may help.