Esophageal Cancer Support Group

Hi Nancy:

Biggest congrats on the good news. Keep it coming !!!!!

As far as the reflux in the lungs goes, I've been dealing with that regularly since surgery in 2004. Some folks have little problems with it. Others......

There is a muscle that is normally at the junction of the stomach and esophagus. This muscle helps prevent stomach acid from coming back up. The surgery normally removes that muscle. If you lie on a flat surface (bed or couch, for instance) a simple burp can bring up stomach acid, which often goes right into the lungs. Then there are often hours/days coughing up this acid while waiting on it to neutralize itself. Quite often, this coughing goes into pnuemonia in a couple of days. This happened to me regularly.

Raising the head of the bed 4-6 inches helps a lot. Ditto a "wedge pillow". I got a Craftmatic bed, as this is easier, still. See if your doc will prescribe what you need.

I also got the "pnuemonia shot". It stops the lung damage from going into pnuemonia. It doesn't help the burning and coughing. I have not had aspirated reflux go into pnuemonia since I got my shot 5 years ago.

Sorry you have to deal with this. I would do almost anything to prevent this. In most surgeries, there is very little esophagus left, so the distance between the stomach and the entrance to the lungs is now very small.

This is based on my experience. I can't speak for anyone else, as I have read a lot of variations over the years.

I hope this helps. I also hope you are able to avoid most of these problems.

All the best,

Fred

YEH, Nancy!!! I'm so glad your PET scan turned out all clear! I'm hoping your eating issues can be getting easier for you with the new knowledge you received while you were in the hospital.

I've said, often on this board, that I'll do just about anything to prevent the bile coming up while I sleep. And, I've actually had only 1 incident where I felt like it may have gone into the lung(s). I asked Fred about it and - once he said he's had that coughing and pain from it that lasted much longer than the short time I had it (probably just a few hours or during the morning. The other times I just bolted out of bed with that burning and gross, burning feeling in my throat. Probably 4-5 different times in the last 3 1/2 years. I would try a hard candy and see if it could get that taste and feeling out. Fortunately, I coud then go back to bed. As, I said recently, I just pile on a bunch & bunch of pillows at the top of the bed and (knock on wood) haven't had any episodes since doing that. Before that I was trying a wedge pillow.

Fred, is absolutely right! Different people have different things that work and different responses from the bile episode. I've been wondering about getting a pneumonia shot & sounds like this would be a good reason to get one....just in case!!

I often wonder though - I don't have dumping issues & I can eat anything I want (volume being controlled). But I often wonder - why can't we all have this result? I mean what is different about my remaining esophagus & stomach that allows me that? I wish there were more surveys and surgeons following up with us to learn from EC survivors how we're doing with eating, etc. I know my surgeons did just one follow-up appointment after my surgery. Course, I LOVE and am so grateful to them forever!!

Thank you Fred & Brenda!! My understanding is that there's no part of my esophagus that was left intact, so there's no sphincter to close off the stomach from my wind pipe. I've only had maybe a dozed acid reflux attacks in the last two years, but frankly, I'd rather suffer end-stage childbirth labor than this! Having even a little burn and taste of this god-awful bile is enough to trigger my medical PTSD (yes, such a condition is real). Such attacks also wipe me out for a couple of days energy-wise. It brings me back to the 4-month agony following surgery. As far as pneumonia, I've had two xrays this past week and was told that I didn't have it (I don't know why since this cough is around the clock!) I think that only people who've suffered reflux attacks can fully understand just how horrid it is? Oddly, I never had reflux attacks until after the surgery. My oncologist, upon learning today that my lung inflammation was caused weeks ago by acid reflux, told me that nothing can be more "insulting to your lungs" and that it might take weeks to resolve. Fred, when this has caused pneumonia, what was done to resolve it??

Great news Nancy. So glad to hear about your clear scan ... and six of them! Congratulations.

I can't help much with the reflux problem in that I have been fairly fortunate. Raising the head of my bed about 3 1/2" and using a wedge seems to have taken care of most of my problems, and my internal alarm seems to go off and wakes me up with a jolt as soon as the taste of bile starts to get in my mouth -- almost always before it comes to choking.

I have only been on here shortly , as you all know but I do want to say congratulations to to Nancy!! I love to hear good news, it does my heart good!!!!