I'm 5 years post op., and I have all the usual problems of dumping etc. but apart from being thin and tired, I'm fairly well. Sometimes I slip off my pillows when I'm asleep, and I get my stomach contents in my mouth and lungs. Very unpleasant and frightening,and painful, and it leaves a foul taste in my mouth. But I'm used to that taste, it's happened 3 or 4 times since my op.
But in the last week I've twice woken coughing and spluttering with a new foul taste much much worse than the other, really disgusting. I've never had it before, and anything new worries me. What is this? what's happening? Why now? I hadn't slipped of my pillows, I was still propped up. Can anyone help?
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patchworker
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Sounds gross but if you throw it up or spit it out is it yellow? If so it might be stomach bile rather than acid - I get that quite a lot and it's awful, it also goes down my windpipe and makes my throat and chest burn every time I breathe and I cough for days afterwards! The main problem is that bile is actually an alkali which means that all the usual heartburn stuff doesn't work on this - I'm still trying to find something acidic that I can keep on my bedside table or in my bathroom to try and neutralise the alkali in the bile. Hope that helps!
I think you will find it is bile reflux. Unfortunately I have been suffering this daily since 2 months post op. I have been looking for a solution to this problem for months. A indications are that it is incurable. But I will keep looking in the hope of getting more than 3 hours sleep before the choking wakes me. Whatever you do, don't lye on your left side. good luck
Yes it is bile and yes it's horrific, I used more esomeprizole 40 mg then.i am post op 8 years my consideration is this beware of contracting pneumonia from aspirating debris,it happens often after episodes.
This can be life threatening,sorry to be so dramatic I was left with this problem it is just a heads up.
I feel your pain. Had an episode on Sunday night and I know it was with eating something 2hrs before bed. Do try not to eat for at least 3 hrs before bed. The aftertaste is horrific and normally leaves me with another chest infection. It's a vicious circle and a constant battle for us. Someone did suggest eating some banana, I have tried it but not quite sure if it worked. I now have ongoing lung issues and a mass on my left lung. Ime on constant antibiotics which comes with more side effects. Ime 3 years post op and really did think I would be back to MY NORMAL LIFE. Not to be so just gotta accept it, kick it's ass and do my best. Good luck and if something works for you, please share
I also suffer with this and after 5 years since op I still get the bile come up at least 5 nights a week have tried every thing. I get all the symptons that everyone else has mentioned the only way I can try and not get it so bad is to sleep upright in the chair downstairs sorry I cannot be any more help but I have come to terms its something I will have to put up with.
Part of the problem is gravity, and not being able to keep your head/neck/throat higher, so it refluxes up into your throat and, possibly, into your lungs.
Bile is indeed alkali and tastes most foul - worse than acid in most people's experience and often coloured green. Antacids won't affect it because it is alkali, and PPIs won't have an effect either (but you may still have to take them). Gaviscon is an alginate that creates a protective raft so that might help. So might cholestyramine.
I daresay the GP might wonder whether you are right about whether it is acid or alkali, but this could be tested. I have not tried this myself, but I wonder whether you might have a cup hands by the bedside and spit it into the cup / receptacle so that it could be tested for acidity later.
I think I would go to the doctor / consult the specialist nurse. One of things that you might think about is whether your digestion is balanced OK. If, for instance, your stools are light brown, oily and float, you may have trouble with digesting fats, and this might (or might not) be relevant because bile's job is to help with the absorption and dispersal of fats.
It is not something to worry about as if it were the cancer coming back, but it is something that needs looking at to make sure your digestion is working as well as it can.
I would also think about whether you might have changed your diet or eating habits lately. If you can try and avoid the foods that are high glycemic and go for foods as if you were diabetic, it will tend to reduce the dumping. If you get dumping over long periods your body will start protesting about it.
Maybe it comes from the gallbladder, it happens me often,often severeal times every week. I´m 6½ years post.op. I am from Sweden so the teknic of surgery it´s maybe different from yours. I have had troubles of sleeping since surgery, I can´t lay down in bed without a pile of different kind of pillows or more often sleeping sitting in a chair, I have tried several medication, but noone is fully helping me. I´m womiting sometimes every day. I can´t bend over whitout the stomac contents in my mouth. I had noticed, fat and spicey food late in the day is bad. I can´t eat food any more whitout white bread and biscuits.So I am not loosing weight anymore, nearly the opposit because my food contents lots of calories. Eat little amount of food at time but often. And general medication as esomeprazol sometimes 4-5 times a day. If you try to eat those just before bedtime it maybe helps you. You have to take a 40 mg tablet.
When I have the severe nighttime bile/acid regurgitation with aspiration, I sip orange juice. It tends to hide some of the foul taste and neutralize the bile somewhat. It helps the refluxate that is in the mouth, throat, and upper esophagus (if you still have one). It does nothing for the refluxate in the airway, but I try to cough that out and then sip some more OJ. It works much better for me than sipping water. \wc
But I don't understand how it gets into my mouth without going through what passes for my stomach and being neutralized by the stomach acid!
I feel very sorry for those of you who get it frequently, it's a nightmare!
I have just finished a course of antibiotics for aspiration pneumonia, could the antibiotics themselves have changed things?
I had my gallbladder removed years ago, so I do have problems digesting fat, and my diet has changed. My husband and I had been struggling to keep our big house clean and to take care of ourselves, so our granddaughter and her husband and baby have moved in with us. They are doing all the cooking and housework and taking care of everything. It's wonderful!
I am on Esomeprazole 40mg, and I chewed Gaviscon when it happened, mainly hoping the peppermint would take the foul taste away.
Thank you all for your suggestions, I hope you're all as well as you can be.
Thank goodness it is a relative rarity with me (10 yrs post op) but I know how awful it is. As well as trying to cough it up I have found that sipping warm milk and eating digestive biscuits can help by gradually reducing the burning so that I have a hope of getting back to sleep. Clearly many of us would welcome an antidote to this and any helpful suggestions should be publicised.
I had two years of bike reflux, until I finally found a solution that works for me. We get bile reflux when our digestive system is irritated, at which point your body attempts to remove the contents in your stomach and thus pushes up bike in to your throat. We can tackle the root cause and should be able to reduce/remove the bile reflux.
1. Stomach/digestive system is irritated, probably by the last meal of the day. Have a hot drink 20 mins before bed to flush the food further down your digestive system.
2. Reduce the gut irritation and spasms by taking pain killers/muscle relaxants. Amitryptline 25mg 1 hour before bed works a treat for me.
3. Use plenty of pillows.
4. Try and avoid mint/peppermint drinks. They can relax the sphincter causing more reflux that usual.
I used to have reflux every night, squirting out of my nose. Now I have no bile reflux and some slight nausea if I slip off my pillows.
I often get the bile reflux. When I wake I can feel it creeping up my throat and I know I am going to suffer pain , not only in my throat but in my ears too. As soon as I feel it I drink coke and take some pain killers then sitting upright in bed I just ride it out. The taste is vile and lasts for 24hrs and I have a (ruckly?) chest until I use my Ventolin inhailer which helps clear my lungs. My best nights sleep was in a hotel where I had so many pillows on a double bed, I was able to make myself a large nest!! Don,t think I moved all night. Wish they could invent Velcro PJs to keep us up the bed!! Otherwise I am feeling great , no other problems, 4 years down the line.
Velcro pjs! What a good idea! Or maybe we could all sleep in deep hammocks, with the sides gathered up so we couldn't slip sideways? Cheaper than an electric bed. And we could rock ourselves to sleep.
I hope this will be of some use. I have suffered bile reflux for so long, it has made my life a misery. A full nights sleep was a thing of the past, being woken up aspirating on bile. after my op I had given up smoking. After aspiring the bile I was unable to cough it up sufficiently, so had to start smoking again to be able to generate enough mucus to cough it up. This worked and I am a smoker again unfortunately. I trawled the web for information on bile. Although there are many articles on it much of it is the same, meaning there is little information in total. At this point I was not even sure if it was bile or acid, though my instincts told me it was bile. Therefore I got myself a packet of litmus strips, that confirmed it was bile with a reading of between 9 and 10 on the ph scale. I then came upon an article written by the Mayo clinic, which said that bile reflux back into the stomach, causes a burning feeling in the stomach, due to the fact that the stomach is designed to contain acid. This would result in making the sufferer feel very nauseous. This was exactly as I had been feeling. After being woken in such a traumatic way I was then up for the night. The feeling and reflux continued even when sitting up. So, I started to drink about 4 cups of coffee, so as to dilute the bile enough that it didn't burn me when I caused myself to vomit (just as the Mayo article said it would make me feel). The only info on bile was that it was for digesting fats that the acid in the stomach couldn't do. There was apparently no cure for excessive production of bile and was something one had to learn to live with. I couldn't accept that. There had to be a solution. My layman's logic told me that if the bile is alkali, then the acid in the stomach should neutralise it to some extent. As I was on Lanzaprazole to reduce my acid production, I decided to stop taking it. As bile is used for fat digestion, I reasoned that if not enough fat was being eaten then there would be a surplus of unused bile that would then back up into the stomach. So, I started adding cream to my coffee, butter and cream plus cheese to my pasta and cream in my cereal . After the first day I had my first 8 hour sleep in nearly two years since the op. This was going fine until the other day, when I ran out of cream. I thought now is the time to make a test so went all day without it. You guessed it, the bile woke me that first night. I am now sleeping lying down. As long as I don't lye on my left side I am OK. If anyone decides to try my method, it would be great if you would come back and relate the results. I am truly hoping this will be a breakthrough for us all.
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