I am six years post op and have tried everything to avoid the terrible GERD I suffer sometimes during the night. I wake up suddenly gasping for breath, with a sharp burning sensation in my trachea and lungs. I spend around an hour doubled over the toilet coughing and heaving, bringing up bright orange stomach acid/fluids. I feel horribly sick the next day, sometimes for two days afterwards.
I have a light dinner at around 6pm every day, drink only water after this and go to bed around midnight. I am currently taking my PPI 30 mins before my evening meal, as advised by my doctors. I have tried taking it in the morning, and splitting it between morning and evening, but that doesn't seem to make ay difference. I am confident that I am sleeping suitably inclined, it just seems to happen very randomly.
I am desperate to try to find a way to manage this, or reduce the severity of the attacks. If anyone has experienced the same or similar and has any advice on what I could try to avoid this in future, I would be eternally grateful.
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Makulit
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Hi, I would just like to say I'm so sorry for the situation you find yourself with this awful condition. I suffer with a lung condition called bronchiectasis and was told the acid reflux I had before diagnosis was often linked to this. I was on 20mg for about 10 years when a new young doctor suggested I try coming down to 10mg. It was horrendous trying to do it but over 6 months I managed it.
I know the damage this acid reflux can do to our lungs so was delighted I was able to manage my condition on 10mg. Unfortunately I started getting a very strong burning in my throat quite recently and realised it was starting up again. I had a phone conversation with my doctor who said it was a flare up and I should go back to 20mg until it settled again. If it doesn't settle in 10 days I have to contact my doctor again to review the situation. I just hope it settles down again. I appreciate i am not in any way as bad as you and I have great sympathy for your suffering.
Please let me know how you get on and if you get the help you need.
What op did you have ? I had Nissan fundoplication and have never felt better although it was a lot of determination to keep my weight stable . eat better and exercise . I had op in Jan 2018 and have never felt better but my surgeon said it would be wasted if I didn't radically change my lifestyle.
Hi Makulit - as well as PPI I also take gaviscon advance at bedtime - I sleep bolt upright - I don’t drink any water as find it comes back up for some reason - I drink cranberry juice - tea and coffee - the last thing I have is at 8pm which is a cup of tea and biscuit - hope you get some help
Hi. I too had an Ivor Lewis (2 years ago) losing the top part of my stomach and a lot of my oesophagus. Over the past few months I have been troubled more by reflux and have tried all combinations of meds but have still been having problems especially like you, during the night and on waking. I came to realise that it’s was worse when I hadn’t eaten for a long time. Like you I ate a small meal around 6 ish on an evening then nothing else till around 8am. I now have something small (biscuit or two or a couple of crackers) before bed and can’t believe the difference. I have little appetite since the op and the advice of small frequent meals has been hard to stick to but I’ve tried harder over the past couple of weeks and so far I have been so much better. Hope this helps!
Hi Tills - like you I have something at 8pm as it helps soak up acid - they say toast is good for that to - I feel for you as I’m 5yrs on and have zero appetite and I’ve had to retrain my brain to eat - it’s very regimental for me and I also have constant nausea - I feel I’ve finally got to a point of managing it and I am very active and outdoors a lot which helps - all the best
I am 3 1/2 post esophogectomy where they removed 2/3 of my esophagus and my pyloric valve at the top of my stomach.
I also have the random episodes of bile reflux at night/ early morning and have the same results as you. I have these episodes 1 or 2 times a month and it seems that I have usually find that I have slipped down to a flat position in bed when it happens. My reflux episodes often cause me to have either pneumonia or a lung infection that can only be cured ( that will stop the nonstop coughing) with a course of antibiotics.
My dr is worried that I am needing an antibiotic regime too many times a year. I am taking an antibiotic right now in fact.
I have been also testing a small snack at 10 pm at night. So far I think it may help.
But the real solution for me is to remain inclined throughout the night and not slide down in the bed. Sleeping in a zero gravity position with both head raised and knees raised seems to help prevent an episode and a slide down in the bed to flat
I'm one year post Ivor Lewis and I get horrible bile and acid reflux during the night and find that a couple of small biscuits and a sip of water help. Crackers would probably be better but I can't find any that help as I have coeliac disease so i have to have gluten free.Good luck with finding a solution that suits you.
I suffered with the same symptoms.what a misrable situation.some years ago I was prescribed ranitidine at night time.this has has now been banned straight away I went back to the situation your now in.after advise from this group asked GP for nizatidine which worked fine,but found size of capsule difficult to swallow.Now prescribed Famotidine which does the trick.
So I take 15mg lansoprazole on waking,15mg lansoprazole at 8pm
40mg Famotidine at 10 pm then 10ml gaviscon last thing before sleep.
I know this sounds a lot but without symptoms return.
Should add I'm almost 9 year post tran_hiatial eosphagetomy.
I think I was told at the time they would remove a large amount of my eosphagus as I was54 at the time and it would give a better chance of long term survival.i think this maybe reason for this gasping then acid explosion
Hi I'm 10 years on and have recently had severe reflux but I think it was a lot of bile as well. Like Greyj above I now use famotidine but I take it occasionally when it flares up, often when I get out of routine. I also have sugar free ( dentists advice) aniseed twists and gaviscon to take at night. Although I do find sometimes the gaviscon if taken after I wake with the burning just seals the pain in whereas milk, or yoghurt can soothe and the twists seem to calm it. I sleep in an electric bed almost sitting upright having had pneumonia twice in the last 4 years due to aspiration. Also too much food is likely to cause a problem for me. I was 48 at the time and had an IL with a lot removed but still here. It is a long and slow learning process that doesn't really stop but you do get much better at dealing with it take care
Oesophagectomy survivors dont get GERD as in clinical terms.
its only regurgitation of stomach contents or some cases bile.
PPI is not a solution for this typical New Normal. Meaning by surgery there will be natural flow backwards due to variety of reasons. Neutralising acid content within the remainigng oesophagus is Tactile method.
Try toasted bread, pop corn in the period before sleeping to naturally suppress the acidic fluid volume while sleeping. sleeping highly inclined. Mental health is good shape.
All successful survivors have learnt to manage their daily life, its a journey with learning on the job. good luck.
I’m in a similar situation Ivor Lewis 6 years ago. Periodically (once or twice a month and typically 2 or 3 nights in a row). Typically occurs at 0200. Sometimes mild and just wakes me up sometimes horrid and I spend the rest of the night like you fetching foul orange stuff and then clear mucus.
It might sound strange but a can of Diet Coke seems to be the best thing for me. It seems to neutralise the taste and the acidic feeling - if I catch it early enough I can actually get back to sleep.
The other thing that seems to help is a scoop of vanilla icecream about 30 mins before bedtime
Incidence has reduced dramatically after my surgeon prescribed 2xSulfracate 1mg twice a day - however, this is a specialist medication, NHS Gp can’t prescribe and it has to be imported as a special order which means it’s seriously expensive. Fortunately my health insurance pays for outpatient prescriptions - due to BREXIT this is now costing north of £1,000 for a 3 month supply
My gastrologist told me to take my omeprazole a hour before supper.Maybe ,that is part of your problem? Maybe,a half hour is not enough time to be effective?Maybe,you should take this up with your doctor.
I have gone through this . Can I be very blunt - Are you overweight ? I was and was cured by a change in portion sizes and food which meant I am now 17kg lighter and healthier . If you aren't I am so sorry but when I lost the weight my life changed .
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