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I need help with "Intra-esophageal reflux"

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Posted 8/26/2011 4:58 PM (GMT 0)
Hi everyone -

I had NF for regular GERD with a small hernia on August 1, 2011. I have not done as well as my GI or my surgeon expected and I continue to experience what both docs call "Intra-esophageal reflux" that keeps me from eating much and I've lost 31 lbs.

Doc says Intra-esophageal reflux is where something stays within my esophagus above the wrap site and according to my surgeon it lies there and "ferments" during the night and refluxes up into my mouth by morning.

All tests indicate my wrap is performing perfectly and is intact as recently as yesteday 24 days post-op.

If you have experience with this phenomenon or have heard of it, what to do to treat it, or where to get expert help for it, please post me here.

Nothing is helping me thus far and I thought I'd be a bit better by now. The post-op pain is better but that's about all. Still refluxing during the day after eating and having bad burning reflux now about twice during the night that wakes me up in pain and with nausea.

I hope to hear from somebody. I can't be the only one out there since this forum reaches around the world.

Thanks,
Rita
Posted 8/27/2011 12:20 AM (GMT 0)
Hi Rita -

The definition for IES (intraesophageal reflux) seems a little confusing.

"Intraesophageal reflux (IER) was present if any portion of the barium bolus traveled cephalad immediately after initial descent to a more proximal anatomic division of the esophagus prior to passing through the LES during the initial swallow (i.e., movement from the thoracic esophagus to the aortic esophagus). If dry swallows induced IER after administration of a bolus, the movement as a result of a dry swallow was ignored. Thus, a swallow with any element of IER was considered to exhibit IES as well. Gastroesophageal reflux was defined as any bolus that initially passes across the LES but travels cephalad back across the LES. " http://www.hindawi.com/journals/grp/2009/965062/

Maybe the wrap is a bit tight and keeping some food from getting past, but it's way too early to determine that. I certainly would NOT get a dilation done for at least a few months - until all swelling is gone. It would be awful to undo tightness and then have the wrap fail for being too loose.

It's common for surgeons to prescribe PPIs for at least a while. I'd make extra sure not to eat within at least a couple of hours of bedtime.

Have you started eating fairly hard-to-swallow foods like beef? Maybe back off the diet a notch to see if that would help.

To help figure out if you have a food trigger or type of food that doesn't go down, you can keep a food journal. Logging everything you eat and drink, the time, and any symptoms will help.

Welcome to the wrappers.
Posted 8/27/2011 2:02 AM (GMT 0)
Rita

I am sorry to hear that you are not at the point you hoped for by this time in your recovery..
You haven't mentioned a whole lot about your diet in your posts, maybe alcie could be on to something... I know I had to go slower than most when it came to adding things to my diet because I would get nauseous if it was too much for my stomach to handle.. then I would back off to lighter fare for a few days.. I went with caution most of the time.. I was wrapped on April 1 this year and I still cannot tolerate bread or beef unless it is ground.. setting up a log journal seems like a great idea to find your triggers..

Wishing you health...

Sandi
Posted 8/27/2011 5:10 AM (GMT 0)
Hey Rita,

Sorry if you've already tried this or if I'm misunderstanding something, but could you maybe try eating a minimum of about 3-5 hours before you go to bed?

My train of thought is that if things are fermenting in your stomach, maybe it would help you if it were empty when you go to bed? Or eat something really easy to digest, like jello or some fruit?

I'm really sorry you're still having problems. I really hope it's just part of the healing process and that it's all over soon.

I really hope that you get well soon!
Ashley
Posted 8/27/2011 4:02 PM (GMT 0)
Hi everyone

Being a writer I'm somewhat of a long-time believer in journaling and have done so for many years. It got to the point in my journey with GERD that my journals became pretty much consumed with details about my diet, trigger foods, symptoms both physical and otherwise and with my sleep apnea as well but I continue journaling faithfully many times throughout the day.

I've had only liquid or very soft foods from the beginning. Let me rephrase that; I had liquids for the first 4 weeks and a combo of liquids and very very soft foods since week 5.

My heart beats rapidly soon after eating anything at all such as the 1/2 cup Malt O Meal, 1/3 cup apple juice and 1/2 piece of toast I just had a bit ago.

My non-liquid foods have consisted of a few noodles, 1/2 of a small sweet potato, scrambled eggs, watermelon and thinly sliced white chicken a couple of times but not very many - oh, and also some steamed rice.

My biggest complaint continues to be the same thing that took place before the surgery and that's the sour/acid like feeling I am awakened with each morning. It causes my heart to speed up and after the surgery I've become nauseous.

I do have diarrhea after gall bladder removal but the early morning symptoms didn't begin till about 3 years ago and they continue after NF.

My GI had me try Bentyl but it constipated me, caused painful bloating and more pain. I didn't have a BM for three days. I stopped it and at least don't feel as bloated. GI also gave me (at my request) Phenergan and I used one at bedtime last night.

This morning I awoke the same way with sour/acid taste in my mouth and with a rapid heartbeat but I was not sick at my stomach which maybe the Phenergan helped.

I can tell now that the 1/2 piece of toast is not setting well on the wrap. It hurts and feels as if it's sticking. Another thing to avoid I guess.

I never eat past 8 pm and usually don't go to bed till midnight. I think I'm being pretty good about most things. I'm even trying to drink more water so I won't become dehydrated. I've done that before and I get very weak.

I'm weak now from not sleeping well or for long enough, low calorie intake and not being able to wear my CPAP. It's been too hot to go anywhere and I can't walk very far due to the bile diarrhea so it's not been a good 8 weeks by anyone's account.

I think if I could say anything to everyone on this forum it would be the same thing I wrote on my forum signature: GERD really does not take place in a vacuum and neither does the recovery from GERD surgery.

We're all so very different due to our personal makeup, our background, the way we handle pain and healing, our different ages, our body chemistry and past health experiences.

Someone younger than I am who doesn't have sleep apnea, has no bile diarrhea after gall bladder removal, who doesn't have food allergies, who can tolerate pain meds without throwing up etc may get through the recovery faster and with fewer symptoms.

I've had no Rx pain meds since I walked out the hospital door. I've had about a dozen Ibuprofen but they don't seem to help too much. I've managed the post-op pain which has been considerable by not really managing it at all. The pain for me even 8 weeks out is unbelievable.

My friend had a knee operation the same week I had NF. She said she could not get by without her Rx pain meds even now after 8 weeks. She enjoys eating and cooking while standing with crutches and a leg brace but otherwise her life is pretty normal while I still can't eat much, am weak, nauseous without my Phenergan and am bored stiff.

I'm so much weaker than I was before I had the surgery. I know I'm whining again but it is what it is. I'm afraid I'm not going to feel up to attending church again tomorrow - got there last week and had to leave - and church is one of the highlights of my weekend.

And so it goes . . .
Posted 8/27/2011 7:20 PM (GMT 0)
I know this is a way long shot, but do you think it could possibly be the Ibuprofen? That has always hurt my tummy, even before GERD.

I don't mean to suggest that it's the root of it all, but maybe there could be a little more sensitivity because of it? I really hope not, since you're not taking any other meds for your pain. Just a thought.

I really hope this stops soon for you!

Also, I almost fainted at your sign off... at first, I thought you were quoting Vonnegut (whom I loved), but then I realized that you love music and that it was probably Billy Joel, who is also amazing :)

Good thoughts your way,
Ashley
Posted 8/27/2011 8:36 PM (GMT 0)
I had the bulk of the dozen or so Ibuprofen the first two weeks after surgery for the pain of the actual surgery itself. Only a couple since week two and they don't seem to help.

I just took a Bentyl again to see if it helps with the cramping pain just in my lower stomach area. Chest pain/esophagus pain doing pretty well.

GI thinks the resident pain is either IBS (which I had before the surgery) and/or the post-coly (after GB removal) diarrhea pain.

Whatever it is the surgery hasn't helped it any but I'm being patient.

I really am. I'm taking on a new demeanor. lol I thought if I could get through the first two weeks I'd have it made but the swelling has proven to be another story altogether.

I'll make it.

Thanks so much!
Rita
Posted 8/28/2011 12:39 AM (GMT 0)
Hi Rita,

You're just five weeks post op. You have had a major revision of your upper GI tract, and have likely irritated your vagus nerve, which is going to take some time to calm down. There is swelling at the wrap site, and things are still healing.

If you can just try to give yourself a chance to get some healing behind you before jumping to conclusions, you may find that many of the things that worry you will resolve themselves on their own.

Any type of food can bother you right now. Your stomach is in an uproar--swollen, and if I remember right, struggling with pre-surgery gastritis. This takes a long time to get better.

Your stomach will not be right for many more weeks. Don't assume the worst, or jump around looking for reasons or solutions to your problems. Just make the best of it, relax, surrender to the recovery, and remember that healing from this surgery will take time and can't be hurried.

It's very common to have some food/drink held back at the wrap site--especially at 4-5 weeks. There is peak swelling right now, and it will take several weeks for it to go down.

Many continue to have some food held at the wrap site indefinitely. I know I do. I have to remember to drink water after eating, to be sure and wash the rest of it down. It's really not a big deal. Sometimes it can be irritating, depending on what has been eaten, and if I forget to wash it through before bedtime. Still, I wouldn't trade that problem for the ones I had prior to my surgery.

When I had my barium swallow after a year, the radiologist said that some of the barium was retained in the esophagus and traveled up and down the esophagus, presumably propelled by air escaping from my stomach. Honestly, I couldn't care less. It's something I have to deal with, and I gladly accept this little quirk. Overall I have done just fine post-op.

So...try not to worry. You had lots of issues prior to your surgery. All that acid has left your esophagus burned, no doubt, and it will take a long time to heal. A Nissen doesn't magically undo all the damage that was done pre-surgery in a few weeks. It takes time and patience.

Try not to panic. Things will improve over time.
Take care,
Denise
Posted 8/28/2011 12:43 AM (GMT 0)
PS
If you're still struggling with gastritis, you might do well to take your PPI's for a while more at least. I have a very reactive stomach, so I have continued to take a Protonix before dinner daily. (Also, I have asthma, and my asthma doc feels more comfortable with me taking that precaution, just in case some acid should slip by the wrap, so it serves a dual purpose.) It's much less than what I was on before surgery, and seems to help keep things calmed down.
Just a thought.
Denise
Posted 9/10/2011 12:19 AM (GMT 0)
FYI - I personally as well as my stomach and any pain etc are doing much, much better but the strange reflux is still there in the morning. It doesn't feel at all like acid. It is something that coats my tongue and teeth and which smells like Parmesan cheese. Not a nice smell to wake up to.

It actually causes laryngitis and/or bad hoarseness every morning and makes me cough in the daytime. I do sleep all night but since I don't cough in the night the reflux (not acid) is bad in the morning.

I do get to see the surgeon on Monday morning and hope he can give me some idea of what's going on and if anything but time and patience can do anything about it.

My bed as per the last 11 years is elevated, I don't overeat. I've lost over 30 lbs and I don't eat late.

It will be interesting on Monday to see what he has to say. When I had the barium swallow after surgery the radiologist did say it sounded to him as if it might be actual food not going down when the barium did go down and that testing for actual food staying in the esophagus would require a different kind of test.

But I do feel better and that's good. Just feel as if I have bronchitis all the time and it's coming from my esophagus.

This too shall pass.
Rita
Posted 9/10/2011 4:42 AM (GMT 0)
When I got my barium swallow, part of the test involved some imitation hamburger thing coated in a gross barium slime. I suppose they didn't include that for you since you were right out of surgery, but now that you are farther out they could probably do that part of the test---although you sound pretty sure of what's happening so maybe confirming isn't worth the radiation exposure.
Posted 9/10/2011 11:14 PM (GMT 0)
One of my pre-op tests included something that was "radiated" and I think that was enough for me.

I hope to get some hints from my surgeon on Monday about what I can do at this point if anything.

Thanks
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