Nightime choking

[Graham39]

I am two and a half years since my operation and am finding that most nights I wake up choking due to reflux. This was only an infrequent occurrence until recently, anybody got any ideas? My sleeping arrangements haven't changed , I use three pillows. I take omeprazole in the morning, should I take something before retiring for the night? I try not to eat in the evening but find it is a time of day when I get a bit peckish. I think I have discovered that cheese is something I should avoid. The situation is becoming tiresome as it leaves me with a cough and indigestion the following morning.

[yorkshirerose]

Hi Graham

I am now almost 3 years post op and I take 10m Omeprazole in the morning and 20m Omeprazole at night, and I still occasionally have to get up and take Gaviscon during the night. I would ask your Surgical team nurse if you should maybe take Omeprazole at night too. I have tried several times to stop the night time Omeprazole but found I couldn't get through the night without it.

Hope this is of some help

Edwina

[Graham39 in reply to yorkshirerose]

Yes, very helpful. thanks.

[phil]

Hi Graham

I am almost 7 years post op and always have Gavascon beside my Bed.The problem is we slip down the pillows at night,and are not consious of it but thats what happens. I also have 3 pillows plus a V pillow and that has helped considerably.Its nothing to worry about and in time you will find a combination of support that suits you.

Regards

Phil

[Graham39 in reply to phil]

Thanks Phil, I'll have to think a bit more about my pillow arrangements.

[SteveJ]

Hi Graham

I am 6 years post op and I have found I only get reflux at night. the thing that gives me reflux is tomato based pasta dishes like spag bol, etc. I too get peckish in the evening and if I dare to have a bit of choclate i usualy pay the price for it. i take 30mg of Lansoprazole a day and i take it half an hour before my evening meal. As most people on here would say we are all different and things work differently for all of us, i think a lot of it is trial and error, keep a food diary and see what is best for you. good luck with it.

Kind Regards

Steve.

[Graham39 in reply to SteveJ]

Thanks Steve, sounds like you are still learning after six years.

[Bernadette]

Hi graham

I have found I cannot drink anything after my meal at night, especially something like tea, which I used to love, if I have anything to drink after 7pm it usually appears again after I go to bed, however I have been known (like this morning) to get up at 5am and have a cup of tea, I suppose the stomach is empty then. Find things change all the time and I am four and half years down the line. Food diary sounds a good idea, but I think you will agree that our lives have to change after this op.

[racy]

Hi Graham,

Along with everybody else i suggest Omeprazole before bedtime. In addition to your three pillows

try raising the head of the bed with a housebrick, or something of similar height, under each foot. It works for me. Also, i stop snacking about three hours before retiring.

Hope this helps.

[Graham39 in reply to racy]

Thanks for the tips- the brick could also be handy in case of burglary'

[getoverit in reply to Graham39]

if you contact MacMillan they will arrange for someone to come and raise your bed properly and the correct height,

[medway]

Although I do not get reflux as I had a merendino interposition op, I have always found that eating something that absorbs acids and liquids is a good way or controlling reflux and the feeling of sickness.

As a sailor I learnt this when feeling seasick. Try being sick after eating 2 dry sandwiches and nothing to drink. Its worth a try - biscuits or bread and nothing to drink for a few hours before going to bed. It is however opposite to what most people suggest of not having anything before bed so up to you to decide.

[Graham39 in reply to medway]

Thanks for the tip,it seems to make sense, I'll give it a try.

[sensus]

Hello Graham.

I am 4 years post Ivor Lewis and I can ditto Bernadettes remarks above. I think its fluids that give me a problem and I too try not to drink anything after 7pm and just suck some sweets. I take 20mg omeprazole in the morning and at night and a lot of Gaviscon before I go to bed. This has stopped acid reflux waking me in the night which as we know is a terrible experience! I still wake in the night with a certain ache in my chest and then I take more Gaviscon which helps relieve this. Hope this helps.

[Buzzboy]

Hello Graham,

Thanks for raising this one. I'm four years post op and I'm fully with all the comments so far

We've all worked out our own strategies for managing reflux. Mine - I sleep on a slope, take Gaviscon last thing at night and a daily Lansoprozole. Often wake around 0400 with mild reflux so have a sip of water at the bedside to flush the acid down then chew a Rennie. This is easily done half asleep and sorts me out until a reasonable time in the morning!

The overnight Rennie is easier for me then Gaviscon - to take a dose of Gaviscon I'd have to wake fully so I can safely handle the bottle and spoon.

I tried chewable Gaviscon (they're available 'free' on Prescription) instead of Rennies - but they leave my teeth lined with chalk.

As Phil dioes, I also sometimes slip down the bed, or move to lay sideways across the slope, so then suffer major reflux. A few tmes this has got into my lungs, resulting in painful coughing fits that last for far too long (especially at 4 in the morning!)

Gaviscon/Rennie/PPIs - all help with Reflux in the gastric pipework. Anyone any ideas on how to handle reflux that has got into the lungs?

[SteveJ in reply to Buzzboy]

Hi Buzzboy

I had reflux come up and go into my windpipe about 4.00am the other day , it was my own fault I had eaten too much too late and so it took me most of the next day to cough it up. By the way you can now get gaviscon in sachet's, they are really handy you just rip the top off and away you go, very easy for the middle of the night.

Kind Regards

Steve

[2Chrissie4 in reply to Buzzboy]

Hi, i have to use an overnight feeding tube in my small bowel for nutrition as i have problems swallowing during the day and can only manage 2 small snacks. I take 40mg Nexium both every morning and every night and yet i still get reflux very badly in that i get woken up every night around 2am with a mouthfull of burning acid which ends up going down the wrong way into my lungs and i then end up with a bad chest infection. What can i do? I use loads of Gaviscon but yet the reflux still persists and i have to use my jejunostomy feeding tube or i literly starve!

[2Chrissie4 in reply to 2Chrissie4]

Forgot to mention my bed is propped up on bricks and i use 5 pillows!

[getoverit in reply to 2Chrissie4]

contact MacMillan, they will raise your bed properly

[chris_usa]

It is important to remember that there are two different issues at play here. One is acid reflux and the other is regurgitation into the oral cavity with or without aspiration.

Acid reflux is safely controlled with PPIs such as omeprazole, raising the head of the bed, no food after supper, gaviscon, etc.

Regurgitation is much more emergent, and aspiration of esophageal or gastric contents is a significant event. Gaviscon will not help here, as aspiration of gaviscon is just as bad as aspiration of the gastric contents. PPIs or H2s (ie ranitidine) when taken in the evening can decrease the volume of liquids in the stomach / duodenum and can lessen nighttime reflux or regurgitation.

Raising the head of the bed also helps lessen both issues. The thing that has helped me most is the absolute avoidance of fatty foods after supper (1730) and no food at all after 1900. Fatty foods stay in the GI tract longer and stimulate the release of bile. It's bile that causes the bitter, nasty taste of the refluxate. PPIs and H2s do not decrease the flow of bile to any significant extent.

If aspiration (breathing in) of gastric contents does occur, the best thing is to get up, try to deep breathe and cough the matter out. I've found sipping orange juice cuts the nasty taste and burning of the airway a little, and I don't gag and retch as much. Once the matter is out, keep deep breathing like you did after the surgery (ie every 15 minutes) and you will probably keep coughing bitter stuff up. If you still have an incentive spirometer, use it. Deep breathing will get most of the stuff out and will lessen the chances of it turning into a pneumonia.

If you start running a fever or are very short of breath, go the the ER. This is an emergency, and aspiration pneumonia can be life-threatening.

Different people are going to have different amounts of this problem, based on the amount of esophagus removed, whether a pyloromyotomy was performed, and presence of dysmotility in the upper GI tract. If you have regurgitation into the mouth or aspiration, it is something to take seriously and treat with caution. When a lot of us tell their doctors about it, the doctors minimize the risk because they are not used to seeing major aspiration episodes like this and assume it is normal microaspirations. Most GPs do not fully understand the severity of the major aspiration episodes that can happen quite frequently if some of us are not very careful.

[Graham39 in reply to chris_usa]

Chris,

Thankyou very much, you have given me a few avenues to explore.

Graham

[bmwhatchback in reply to chris_usa]

Hello there - just picked up on your article written some months ago and found it extremely helpful as my husband is 6 months post I L operation and suffers reflux. I will take on board your comments.

[chris_usa in reply to bmwhatchback]

Please let me know if I can be of any assistance to you.

[bmwhatchback in reply to chris_usa]

many thanks for your concern and interest

[2Chrissie4]

I take 40mg Nexium in the morning and the same every night. Recently i had to have my jejunal feeding tube changed using the pull through method which left the internal tube stopped stuck in my throat for a few minutes with the medical team having some trouble getting it out. This all left me with the inevitable sore throat and i am afraid to say very bad reflux every single night whereseas before the procedure i only had reflux at night maybe 2-3 times a week. What do i do now i ask?

[chris_usa in reply to 2Chrissie4]

2Chrissie4,

I'm not sure how long ago your surgery was, and what type of surgery it was. In a lot of cases, the major regurgitation tends to improve over time after the surgery, or at least decreases in frequency.

Even though the feeding are going in via J-tube, it would still help to raise your head up significantly at night. The Nexium will decrease the acid, and maybe make the refluxate a little less irritating. But it will do nothing to decrease the incidence of the regurgitation itself. If I may ask, are you taking metoclopramide or erythromycin? These can help food and feedings progress thru the GI tract and potentially decrease the reflux and regurgitation.

I would also ask the surgeon / dietician about the rate of feedings and feeding product. It may be that lowering the rate could help or that a different jejunal feeding product may be better tolerated. It would be worth looking to see what if any changes were made in your feeding routine after the tube was swapped out.

I know how difficult these episodes are, and I hope you find some answers to help you in this.

[2Chrissie4 in reply to chris_usa]

I had the Ivor Lewis back in October 2004. Astonishing you may say that the reflux is now getting worse. Last week i saw my dietician and quieried the type of feed and the rate that i use overnight and she said that due to the re-configuration of my insides and that i had a pre-existing malabsorbtion problem she felt that the type of feed that i am using is correct for me and that any change could affect or exacerbate any problem that i have with my digestive tract. The rate the dietician felt (at the moment 55mls per hour) is insuficient for my needs and that she advised me to up the rate if my bowels could tolerate a faster rate. Because i have recently (last October) been diagnosed with Parkinson's, i now have to take 1mg Rasagline every morning and this in turn affected what medication i can take for nausea/transit through the system. So instead of taking metoclopremide i now take domperidone 3 times a day. The reflux has been made very much worse after i had my jejunal feeding tube replaced last Friday 12th April. The reflux only affected me prior to this 3-4 times a week despite my bed being elavated at the head and my using 5 pillows. Now the reflux since last week is so very much worse in that i have bad episodes of reflux 3-4 times a night every night and i am sleeping sitting up most of the night in a chair instead of a bed! I also have to take since last week 10ml Gaviscon 4 times a day with little relief and to cap it all i have a sharp pain in my left armpit near my breast that is getting on my nerves since last night.

[2Chrissie4 in reply to chris_usa]

Thanks for the reply. I had the Ivor Lweis back in 2004 and despite having several dilatations in the 1st year things calmed down to some extent and i got on with my life then in the last 4 years i lost atremendous amount of weight and had all the tests done and they came back clear. In the meantime the doctors recomended that i have TPN feeds temporarily to help me get some nutrition via my veins. I then progressed after gaining some of my weight to having a jejunostomy feeding tube fitted for which i rely heavily. The tube gets changed whenever i have a problem or within 18months - 2 years whichever comes first. I have been on Omeprazole, Lanzoprazole and now Nexium for what i thought was acid reflux in the last 3 years. Now i had my latest tube change on April 12th this year and due to a few problems during the procedure i:e internal tube stopper getting stuck in my throat the reflux (which the gastro doctors think is due to bile reflux) has got very much worse. Before the tube change the reflux was 3-4 times a week but now post procedure the reflux is 3-4 times every night and that's not counting the reflux during the day! Since i have recently been diagnosed with Parkinson's i have to take medication for that and i can only take Domperidone for nausea and to help any food that i have in my stomach tube get through my system. The rate for my overnight feeding regime is 55 mils an hour over 12 hours any faster and the reflux is worse. Thanks for reading my rant.

[Westoncromwell]

i am 18 months postop and occasionally do get reflux mainly if i eat late at night. I also have a habit of eating alot os extra strong mints and I think that can bring it on.

Most of it, I must admit is self inflicted. If I ate less or at more controlled times and cut out the mints I think I wouldn't get it

best wishes

Brian

[Graham39 in reply to Westoncromwell]

Thanks Brian, we all seem to be different and learning what to eat and when. I definitely think eating late at night is not good.

[gutlesswonder]

It is alarming that only chris_usa has got a proper grasp of this VERY serious subject.

As he says there are two issues -

1) Acid "burning" feelings ,plus bitter Bile--whilst nasty this has a protective effect in that generally it will wake you up before inhalation.

2) Inhalation or just overflow into the lungs of any liquid whether or not the acid content has been reduced by Proton inhibitors ,acid neutralizers ,when you ate ,what you ate or whatever.

IE: You are in more danger if you don't feel the discomfort.

I am 22 years post Ivor Lewis Eosophago-gastrectomy.The problems we are all familiar with were in my case exacerbated by a simultaneous Cholecystectomy (removal of Gall Bladder )which meant that I had continuous free-flow of un-concentrated Bile .Four years ago ,despite taking Omeprazole, I got Aspiration Pneumonia (AP) on a Friday and was listed for Pneumonectomy

( removal of Lung ) the following Monday. Fortunately a very conscientious Physio devoted Sat & Sunday to a Cystic Fibrosis like regime of massage and exercises ,the Lung was cleared and I avoided what would have also been my third Thoracotomy.

More Post Ops die of AP than any other cause !

Since that time I have slept on a slope.A brick is not high enough ,you should aim for about six inches at the head legs. It is simple hydraulics ,the Neck needs to be sufficiently elevated that no amount of tossing and turning will result in discharge back up into the throat.

By the same token pillows are DANGEROUS.As noted above you slip down or sideways.But even worse ,by bending the body at the waist they compress and kink the pulled-up Stomach Tube causing it's contents to flow the wrong way.

I t was not an accident that when born Nature had equipped each of us with three non-return valves - the Upper and Lower Esophageal and the Pyloric Sphincters. Most of us have lost or lost the use of all these ,hence our lungs are in real peril.

Its 1000 PM and I am going to eat a Chicken Vindaloos with a generous glass of red wine secure in the knowledge that I will sleep soundly . Tempting fate ? You bet.

[Hidden]

The only thing I would add is that reflux is not always acid. It can be bile (alkali) as mentioned by Chris_USA in his really helpful contribution. The more of your stomach you have had removed, the more likely the reflux is bile (which tastes really foul). There is something called impedence monitoring which can test for whether reflux is bile or not, and cholestyramine can help sometimes.

[Graham39 in reply to Hidden]

Thanks Alan,

Will see you at a meeting again one day when I've managed to save enough for the train fare.

[Westoncromwell]

hi,

I'm 2 years 3 months post op and I found that I had relux which went into my lungs on occasion and caused a horrible pain. I find that 2 pillows does the trick.

I also eat the extra strong mints from marks and spencer and find that they sort out my digestive system appreciably

Best wishes

Brian

[chasmur]

Hi

I am 2- 3/4 years, post op and I am taking nexium twice a day and renatadine once in evening a few hours before bed that works for me,

[patchworker in reply to chasmur]

I take Nexium in the evening, but my problem was I slipped diagonally off my pile of pillows and then got painful reflux. I had a firm pillow under my knees to stop me sliding down the bed, but it didn't stop me sliding diagonally. But now I've discovered a use for my V pillow. I put it round my neck like a huge feather collar, with the bottom of the V at the back of my neck, and the two ends over my shoulders and down my front, and then lie back onto my other pillows. It not only stops me sliding, it keeps my shoulders warm, another problem with sleeping propped up.