I'm about 18 months past the removal of my oesophagus and all has settled down quite well. Except, a couple of times a week I'm suddenly awakened by a rapidly-increasing fit of coughing. The coughing is accompanied by burning pain at the back of my throat, and sometimes a feeling of nausea. Getting out of bed and settling into a recliner chair helps; it usually passes after a half hour or so. My doctor can't offer any suggestions, and a recent chest scan revealed nothing amiss. My eating has reverted into something approaching what it was before the operation (but smaller amounts). Can anyone throw some light on this?
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ArtPepper1
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hi ..well done on getting this far 👏🏻👏🏻 sounds like reflux causing this as now we don’t have a sphincter..so if your not sleeping at an elevated position it creeps up till you awaken..I take a tablet every morning called Lanzoprale which keeps it stable ..have you not been prescribed this
Hi T-H, I take a Nexium-type thing called Somac, 40mg every evening. I'm interested in your suggestion of reflux and will mention that to the doc next visit. Thanks for your response.
hi just wondering how you are doing , I spoke to you not long ago after I had just had my news after 2 yrs surgery had a recurrence in lymph node in neck and you had had a recurrence I’m just having chemo just wondering how you were getting g on x
hi ..I’ve had a 2 month break after last lot of chemo (6 month of capox)..but CT scan had revealed it was stable ..I’ve just come back from the Lake District today funnily enough..been great but I feel something is not quite right with my swallowing..And my next meeting is Monday morning with oncology..so I can see another CT scan comImg up ..is this your first lot since reacurrance ..how has it been ..mine was awful tbh ,worse than the original
yes it’s my first lot I’ve found it draining the nausea is vile and it completely wiped me out first week I’ve got 3 cycles then a scan then see if I need radiotherapy . I hope your appointment goes well fingers crossed for you .
it just gets worse doesn’t it ..but you can do it then fingers crossed for a stable condition..I can’t I’ve got it at times I feel so well ..positivity will get us thro ..I’ll be thinking about you and send strength 💪🏻
I keep my fingers crossed for you , I’m ok waiting on scan to see if chemo has done anything it’s all the waiting about and waiting to know what’s going on is the worst isn’t it 🙄 still sick with the chemo though takes over your life doesn’t it x
yep, I’m lucky enough to have an electric bed and I sleep sitting up however the odd slide down the bed occurs and that’s when it happens. It takes me a couple of episodes of vomiting and some gaviscon to recover. It takes about an hour to recover and it’s quite distressing so I try to avoid at all costs.
hi I agree with what has been said by fellow less oesophagus if you get my drift ha ha the dreaded bile acid reflux I take esomeprazole which I was told to be slightly stronger and also one gaviscon of a evening just at bed time , it’s not a cure but it does help, I am now 11 year on from my op and now 75 years and just been getting on with my life , I wish you all well and happiness xx
Hi Art, I'm glad there's somebody else in my club. It's the worst after effect I suffer. It is just a reflux reaction but as you know if you don't catch it early it can go on and on. I have wedges and an electric bed but the reflux still finds its way up. I normally sleep lightly and if I feel a cough coming, I hoist myself up and suck one Gaviscon slowly and that normally settles things down. If I'm in a deep sleep, a rare event, and don't wake until the cough is in full flow then there is no option to get up and stand or sit in a chair until it eventually subsides.
Hi Art.. I’m 2 years and 4 months post surgery. As everyone else has said it’s a problem we all suffer with. The key is to manage it best we can. I sleep sat up. I have a Queen Rose body pillow, I tuck the body support bits under my bum crossed crossed to stop me from sliding down. I take 40 mg Omeprazole every morning as advised by my consultant it’s not as effective taken at night. If needed a little Gaviscon at night. I don’t eat later that 7pm. The burning and disgusting taste is awful. Hope some of this helps.
I had similar reactions after my surgery. I initially went back to my previous diet, but that brought on serious ulcers and burning episodes like you describe.
What did I change? 3 things. What I eat (see chart), when I eat (nothing after 6pm), and the angle I sleep (70 degree angle). Since then, ulcers are gone and no more overnight throat-burning episodes.
I am approaching 6 years post surgery. I take protonix and that prevents heartburn but does not affect reflux. I have a bed that raises up as high as I want but I finally went to sleeping in a good recliner where the head/back has a separate motor than the legs. It made all the difference in the world.
I am now one year in the recliner and I no longer have reflux.
I'm sure u are eating healthy small meals often and not eating after 6pm. No acids like tea coffee some fruits or alcohol. Drinking lots of water through the day
Sounds like reflux. You need a ppi (eg omeprazole) taken equally morning and evening ( not sure why you take a large dose just at night), avoid eating and drinking late and take some antacid liquid ( eg gaviscon) just as you go to bed. Also some foods and drink may now be harder to tolerate so beware fatty foods, caffeine, carbs, spices, sugar, alcohol and fizzy drinks late in the day. Suggest you keep a food diary for a fortnight or so to help identify things that upset you - your specialist dietitian or upper GI nurse should advise. Also try looking on line for foam manufacturers and buy yourself a custom made wedge raising your upper body on an incline from waist to head of about 8-10 inches. It’s better for you than just lots of pillows . Good luck.
Absolutely what everyone else has said - the dreaded night time reflux. Try not eating at least 2/3 hours before bed time and sleep in an elevated position.. I am also lucky to have an adjustable bed but like Deeedals said the odd slide down and the reflux creeps up! I take lanzaprozle 30mg twice daily and peptic when required.. I am now 5 years post surgery.
Thanks, Splodge, for your comments. The consensus here seems to be reflux, but I had years of reflux before the op, and I have no other reflux-type symptoms at all... a bit of a mystery to me. Doesn't appear to be triggered by any particular food or drink. So I will, as they say, just soldier on.
Yes, definitely sounds like reflux. As I understand it we will always need to sleep raised up. An adjustable bed is great if you can afford it, otherwise a wedge. The advantage of the bed is you can raise your feet a bit as well which goes a long way towards preventing slipping down. I take lanzoprazol in the mornings and gaviscon after evening meal and before bed.
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Really appreciate your sharing of experiences 
Oesophageal cancer 
Hiatus herni
Can someone tell me what this taste is?
