SEVERE REFLUX QUEST FOR CURE - SO NOW WHAT?

Well, after my third surgery (I had my nissen fundo taken down!) it seems all my old problems are back. Constant, non-stop reflux, gerd, pain that radiates up to my neck, nausea and an inability to breathe deeply and satisfyingly. So...now what? I was told by a different doctor than my own that I should have never had the reflux surgery because I don't respond that well to many medications, including nexium, which I take two a day. I still had to take them even when I had my fundo wrap in.

I'm wondering if it could possibly be something like a chemical imbalance in my brain or something? I've read studies where people said they went on anti-anxiety meds and instantly became better. Does anyone else know about this? I've been seen by top doctors here on the east coast and they are all just baffled. They just can't figure it out and neither can I. Even was seen by the famous Dr. Salky in New York and he didn't know what to do! What the hell!!!!

I know one thing, I seriously hope my LES isn't damaged or anything or that I am going to have even worse problems than before I had my surgery, because I was very miserable before my surgery and also during it. I'm 29 and have been suffering from these problems since I was 18. I'm a singer, on top of that, so having this disease is not a good mix! Any advice would be appreciated.

* To note: I did not have aspiration in the lungs or anything of that sort. The above symptoms I listed are just constant and I never get a break from it.

Hi Paddy,

I'm guessing your swallowing issue has disappeared.  I guess you can't expect not to have the same amount of reflux you had prior to your Nissen, once the wrap is no longer there to stop the acid and food from migrating into the esophagus.

I would suggest visiting a medical center that has an excellent reputation for their GI and esophageal treatment.  Just because you saw Dr. Salky and weren't offered any solutions, doesn't mean that a pair of fresh eyes might not find an answer to your problems.

You obviously can't go on as you are.

Sorry you're struggling.

Denise

Well since the wrap isn't there my regular LES muscle is still there right?

Thanks, I appreciate that. Have you ever heard anything about anti-depressants working for these problems? Or anyone else?

Hi Paddy,

I just searched the topic and found this post by PPILESS.  FYI, here it is.  Hope it's helpful. 

Based on my research, it appears that the anti-depressants can help with the transient LES relaxations (tLESrs). One of the causes for the tLESrs is the faulty / incorrect nerve signaling (brain is supposed to tell the LES to open up during the peristalsis and then close once the food is in the stomach - however, this mechanism gets compromised). Further, anti-depressants can help with the overall "calming" of the nervous system and therefore not being so sensitive to small amount of stuff (acid etc.) in the esophagus.

In my case, benzos (klonopin) did / do help me with this - but I can not stay on them for too long. SSRIs are supposed to help too - but I can not stay on them at all.

Natural things such as yoga, breathing and meditation do help - and are helping me.

Hi Paddy,

We try! Hopefully we can help in some small way. We were helped, so we stuck around to help others!
Have a great week.
Denise

The interesting thing is the stress, depression and anxiety are all caused by my stomach problems. Now that my old problems are back the way they were before I had surgery, I am under a tremendous amount of stress because it never goes away, its 24/7. Some times are worse than others. The pain radiates up to my neck, too and makes me feel like I can't get a deep breath in. When I eat, its worse. Nausea, food comes up, heartburn, and it also seems to cause me to have weird pains like muscle aches, also causes fatigue. And no doctor can figure it out. Sometimes I feel like looking stuff up and coming to forums like this are more helpful than talking to a doctor, because they just don't get it. I understand they don't know what to do, and what I have is not as common. They gave me the surgery thinking it would cure me, but all it did I guess was get rid of the GERD but whatever is causing my GERD still gave me problems, its just that it wasn't refluxing anymore, and obviously, I could breathe better (no, it was not aspirating into my lungs either). The surgery, it seemed, just prevented the stuff from coming up but it was still there, just further down and suppressed because of the wrap. I'm looking for someone that has similar or the same problems I have and looking for their advice. When I eat, the reflux comes almost five to ten minutes afterward. I've seen on websites where they say it takes around 30 to 40 minutes after you eat, not with me, it starts immediately and I still feel it even when I'm not eating. I've lost so much weight because of this. I'm a skinny guy anyway but now I'm down to 116 pounds. That makes me extremely depressed and hopeless feeling, I'm never comfortable.

It took me a while to find the right doctor who knows how to treat my problem. Before that I was desperate too. I lost weight, had heartburn whenever I ate something not right, had sleepless nights. Your case is more complex because you had done a wrap, and an unwrap. No one is sure how that could affect your stomach. But never underestimate your body's ability to heal.

Do you experience inflammation (esophagitis) as a result of your constant heartburn? Do you feel a prolonged continuous irritation or pain that doesn't go away, or is your irritation or pain intermittent?

I can't imagine the pain you have been enduring through. That doesn't sound right, because you said you are taking double-dose Nexium. I wonder do you need that in the first place. You need a good doctor who will run some tests again, because your last endoscopy was done 6 years ago, wasn't it? Things changed because you have just had a surgery. Meanwhile I am sure you can follow some diet/lifestyle arrangement that will minimize the pain. Try some medical nutritional product, usually in the form of beverage, since you are losing weight. You need to tackle your stress, and your gastrisis/esophagitis together. Because it kickstarts a vicious cycle. stress causes GI problem and vice versa. Be strong. Take care.