post-esophagectomy reflux and aspiration

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RE: post-esophagectomy reflux and aspiration

by pratt on Tue Jan 19, 2016 05:27 PM

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I am 2 years out and my surgeon classifies my post-surgery reflux problem as really severe.  My bed is flat and the head is elevated 14" above my feet and I sleep on my side.  I have found my cure to sliding is to put a memory foam on top of the mattress, use flannel sheets, and use a  throw-sized pillow with flannel pillowcase and pull it up under my rear to act as a stopper.  Works like a charm for me.  I still have the nose, sinus, ear, lung reflux every couple of months and throat much more frequently in spite of 300mg zantac before bed.  I think this is as good as it gets.  Reflux seems to be better since I have started sleeping the firest couple of hours in a recliner and then go to bed when I wake the first time.

RE: post-esophagectomy reflux and aspiration

by steveb50 on Tue Jan 19, 2016 07:58 PM

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Hi ~ My husband is 4 yrs post-op and has only rare episodes of reflux. He either eats too much to close to bedtime or forgets his 5pm dose of medicine. He has been taking 40mg of omeprazole before and since the surgery. His oncologist mentioned that he may want him to change to zantac (ranitidine)but we are apprehensive about changing. I'm not sure if the problems people have post-op are from how the surgery was done or that he takes  40 mg of omeprazole at 5p every night. Even though the omeprazole(prilosec) is available over the counter our dr sends a script to the pharmacy and it is covered with a $5 co-pay. He uses two pillows and sleeps on his left side. I hope this info will be helpful.

Best,

Tracy B.

RE: post-esophagectomy reflux and aspiration

by steveb50 on Wed Jan 20, 2016 02:04 PM

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It occurred to me that one of the side effects from this surgery is damage to the vagus nerve. My husbands was nicked during a biopsy for EC and resulted in vocal chord palsy which led to aspiration and running out of air while speaking.

He had a couple injections in the vocal chord but it didn't improve his situation so he has a vocal chord implant now and his voice improved as did his breath while talking and the incidences of aspirating. I'm not sure if this applies to your situation but just in case it sounds familiar I thought I should post it.

Best,

Tracy B.

RE: post-esophagectomy reflux and aspiration

by doingfine on Sun Jan 24, 2016 12:56 PM

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Similar story for me also. I had the injection that did not work, but then had the implant.  It greatly improved everything from breathing to talking.  I too recommend the surgery if you have vocal cord damage or vagus nerve damage in the throat.

RE: post-esophagectomy reflux and aspiration

by Notfun on Tue Aug 30, 2016 04:11 PM

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I am 8 years out from my esophagectomy with stomach pull-up. I caught it early so didn't have to do chemo or radiation. My reflux is still with me and getting worse. I sleep with my head elevated, watch what and what time I eat, and take Dexilant (PPI) and Zantac before bed. Nothing really helps. I'm thankful that I'm still here and relatively healthy but the coughing all night, aspiration of bile, and the general lack of good quality sleep is really affecting my quality of life. I recently saw a pulmonologist because of some nodules in my lungs that were picked up incidentally on a CT scan. He found that I have bronchtelectsis and believes that I have contracted an infection called MAC due to my lungs being compromised due to the aspiration. I had to have a bronchoscopy and we are waiting for the culture to grow out. There's a great website that explains MAC (Atypical mycobacterium). It's related to TB but it's not infectious. Treatment is long and difficult. There is a stron association between reflux and MAC. Apparently the aspirated stomach contents sets up a great environment for this bug which exists in the environment. PLEASE talk to your doctor and see a pulmonologist if you can. Do the research and bring it to your visit. It's important to get treated. I'm seeing a new doctor at UCLA (GI) and hoping he can find a way to reduce the reflux. Aspiration of bile/acid over a long period of time is dangerous. And it's so frustrating because there's no good treatments. Bottom line is take care of your lungs just like we take take of our GI system. If you have reflux it's very important.

RE: post-esophagectomy reflux and aspiration

by Pepermint on Tue Jun 06, 2017 07:59 AM

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On Jan 06, 2008 12:00 AM kiwiwim wrote:

I had my Ivor Lewis operation in December 2003.

My experiences are similar to you all.

I still have the "dumping" experience and the reflux.

Over the years I have learnt to live with it but at times it gets too much and then I discuss it again with my doctor and my daughter who is also a GP, but without much help from either. You know the comments, eat small helpings often, don’t eat before going to bed, and have your head elevated during sleep. I do not think that the medical profession has answers to our problems!

I found this site because I had an episode of really bad refluxes, and I was fed up, like Cyclist I wanted to know if I was the only one?

Thank you Steve for starting this message thread.

I have tried at times to record what it is that triggers these bouts of dumping and or refluxes, but have not found any conclusive results.

I believe that excessive consumption of particular foods triggers things,especially fatty greasy food, whipped cream, lettuce and some other greens such as broccoli (the latter is no hardship). And certainly escargots in buttery garlic sauce, (which is a hardship). I have found that light manual work generally helps me feel better rather then sitting in front of the computer for long spells.

Drinks with or without meals do not effect me, I can have an extensive dinner in a restaurant with a glass or two of wine and have no problems, while a quick meal like a pizza will give me major problems. My reflux occurs mainly in the early hours of the morning, many hours after having eaten anything.

I am interested to know if anyone else but "tongrenhealer’s husband has had any improvement with using Domperidone. I prefer not to use too many medicines. I take daily Loperamide, which helps control dumping to a certain extent, but by experience I have found that a large dose (4-5 tablets) stops all bowel movement and on one occasion this ended up with a stay in hospital.

Otherwise I lead a normal life and consider myself lucky.

Wim

It's a relief that someone else has the same problems as me. Like you I have found GP's ignorant and only superficially interested, with the attitude that you aren't a medic therefore can't possibly understand as opposed to admitting that it's outside their experience. I too have a daughter who is a GP who tries to help, but it's outside her experience. GP's don't appear to be evidence based, e.g. If a drug does not do what it says on the tin, then they try another one, instead of realising that despite the symptoms, the problem can't be what the drug is intended to relieve. I am also interested in knowing if you have bad problems with wind whenever you eat. It's almost like an "air lock" in the tube which is my stomach, which food and liquid can hardly get past. So I'm loosing a great deal of weight. You can't live on honey !!!

RE: post-esophagectomy reflux and aspiration

by slpmom on Wed Jun 21, 2017 12:57 AM

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When is the last time you had an endoscopy done to check for swelling or scarring of the esophagus? That can cause difficulty swallowing and they can stretch it or give meds to reduce swelling.

RE: post-esophagectomy reflux and aspiration

by steveb50 on Wed Jun 21, 2017 08:46 PM

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I would make an appointment with a gastroenterologist.

RE: post-esophagectomy reflux and aspiration

by sewilkerson on Thu Jun 29, 2017 08:57 PM

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On Jun 06, 2017 7:59 AM Pepermint wrote:

On Jan 06, 2008 12:00 AM kiwiwim wrote:

I had my Ivor Lewis operation in December 2003.

My experiences are similar to you all.

I still have the "dumping" experience and the reflux.

Over the years I have learnt to live with it but at times it gets too much and then I discuss it again with my doctor and my daughter who is also a GP, but without much help from either. You know the comments, eat small helpings often, don’t eat before going to bed, and have your head elevated during sleep. I do not think that the medical profession has answers to our problems!

I found this site because I had an episode of really bad refluxes, and I was fed up, like Cyclist I wanted to know if I was the only one?

Thank you Steve for starting this message thread.

I have tried at times to record what it is that triggers these bouts of dumping and or refluxes, but have not found any conclusive results.

I believe that excessive consumption of particular foods triggers things,especially fatty greasy food, whipped cream, lettuce and some other greens such as broccoli (the latter is no hardship). And certainly escargots in buttery garlic sauce, (which is a hardship). I have found that light manual work generally helps me feel better rather then sitting in front of the computer for long spells.

Drinks with or without meals do not effect me, I can have an extensive dinner in a restaurant with a glass or two of wine and have no problems, while a quick meal like a pizza will give me major problems. My reflux occurs mainly in the early hours of the morning, many hours after having eaten anything.

I am interested to know if anyone else but "tongrenhealer’s husband has had any improvement with using Domperidone. I prefer not to use too many medicines. I take daily Loperamide, which helps control dumping to a certain extent, but by experience I have found that a large dose (4-5 tablets) stops all bowel movement and on one occasion this ended up with a stay in hospital.

Otherwise I lead a normal life and consider myself lucky.

Wim

It's a relief that someone else has the same problems as me. Like you I have found GP's ignorant and only superficially interested, with the attitude that you aren't a medic therefore can't possibly understand as opposed to admitting that it's outside their experience. I too have a daughter who is a GP who tries to help, but it's outside her experience. GP's don't appear to be evidence based, e.g. If a drug does not do what it says on the tin, then they try another one, instead of realising that despite the symptoms, the problem can't be what the drug is intended to relieve. I am also interested in knowing if you have bad problems with wind whenever you eat. It's almost like an "air lock" in the tube which is my stomach, which food and liquid can hardly get past. So I'm loosing a great deal of weight. You can't live on honey !!!

Do you feel kind of sick when the "air lock" is happening? Also,when it does pass, is it followed by one or more very loose or even liquid stools?

This happens to me too. I think it is something to do with our vegas nerve being severed during the surgery. I either have to wait it out and stay close to a comode or sit down and try to force your digestive system to get on with it despite the absense of vegas nerve control.

New borns have the same symptoms as the vegas nerve developes. That's why they make faces while they're crapping they're diapers.

On the upside, I feel great afterwards. 

RE: post-esophagectomy reflux and aspiration

by GScottB on Sat Dec 02, 2017 01:59 PM

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On Feb 12, 2015 5:27 PM beee1 wrote:

Have you had a swallow test to see if your pyloric junction is wide enough to let the food go down?  I had to have mine stretched and yes I have horrible bile in lungs but not as often. I take great care not to sleep too fare down, and I take zantac 175 at bed time per my gastro dr. also keep crackers by my bed and some water. I just got over and episode of asperation, I have had it 5 times in a year some I catch before it goes into my lungs. I can taste it coming and I jump out of be and get a drink of milk and alkazelter and some tums. It stops the burning in my ears and throat in a few minutes. But if I dont catch it in time it is days before I can get it out, then I cough for about a week with out the fire feeling in my lungs and throat. I would do anything to sleep normally, but for us it not going to happen ever again. I even went as far a streaching a long cloth over the top of the head board and putting it like a sling under my arm pits to hold me up to make sure I do not slump down too far in bed, thats how awful this is and a lot of people do not understand how bad it is. They say, oh yea I get that evey so often, well no they dont not like us,  Let me know how you make out. I am also glad for this web site, it has saved me a lot of pain and knowing there are more of us out there is a comfort.   Hugs

I know a lot of these posts are years old but that does not change the usefulness to others just starting on this journey.

I had to laugh about the sheet used under armpits to hold you up. I dont know how many times this thought has run through my mind.

I now sleep in a recliner since I tend to slump over during the night and asperate. I have 7 or more pillows I used to lock myself into a position so I dont move during the night and yet sometimes I still wake asperated. I would do anything to never do that again. I think its worse then the recovery from my esophojectomy. I'm sure thats only because my mind has blocked it out.

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