British Lung Foundation
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Gullet and valve not working

Hello lovely people I thought I’d let you all know the outcome of my recent visit to gastro consultant, yes my esophogus and valve is not working as it should so my reflux issues along with the mucus copious of it is here to stay, they cannot offer any solution to rectify this it would need a major op to remove the esophogus an operation I am told I would not survive..,, to say I’m disappointed is an understatement, I stressed to him that I surely can’t live like this but he was so matter of fact and unmoved I was heartbroken and scared in a state, just before I left he offered my erythromycin 5ml 3 times a day this might help, I don’t fully understand why nothing can be done I know people with poorly lungs do have operations, and nothing is slowing the mucus much, just thought I’d let you know as a lot of you have made suggestions etc which I am so grateful for, xxxxhope you are as well as can be

D

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Dear carolg1,

I was so sorry to hear of your health problems. Your worries are understandable. You have my thoughts and prayers.

Bill

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Oh I am so very sorry. Not the news you were hoping for and neither were we.

Sending lots of healing hugs.

Cx

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Firstly, rather than Erythromycin I would use Clarithromycin as it's far less likely to cause tummy problems. That's my view anyway.

Can you not ask for a second opinion and see another specialist?

I have terrible reflux and mucus infections. I've just had a Septoplasty and Fess on my sinuses, it was painful but is easing now and I'm told will help.

I am seeing a specialist and having an endoscopy and Barium swallow and going to have something called Linx surgery, try googling it. They put a little bravely around the oesophogus that keeps it shut so acid does not come back up but it opens wen you eat.

I don't know if there's any age limit on having it done. I would ask to see someone else and explain how terrible things are for you.

In the meantime, I find Neilmed sinus rinse twice a day really helps flushing out.

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Hi shanock I’m 62yrs and have severe copd app I would need a general anesthetic which I would not survive ??? What is the erythromycin supposed to do for reflux ? 5ml 3 times a day, I though clarispmycin was an antibiotic. I am so confused by it all thanksso much appreciate your advice xx

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Oh right if you don't have infection then I don't know why Erythromycin as it's an antibiotic like Clarithromycin but seems to cause more tummy probs.

I'm so sorry I would go to the GP asap and ask him why you've been put on abs and talk to him about your conerns.

Do you take something for reflux? I use Nexium (Esompeprazole), 40mg per day and Gaviscon advanced 5ml after I eat and before bed. It really does help. I've got an open valve also so that why I'm having the surgery. I also have 25ml of Aloe Vera juice each day, I get mine from Amazon but they sell it in Holland and Barret or other health food shops and boots. It's pricey but lasts for ages as you only have 25mls a day mixed with cool water. I also drink lots of boiled warm water and especially with food. And I have a yakult everyday and a pot of natural yogurt.

I'm not sure about the antibiotics I don't know why you've got that?

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Hi shanock , yes the erythromycin is apparently used also to treat reflux,something to do with a motility of the lower valve I’ve just googled it, I pray it help apparently it also helps push the food through, my life is so miserable at the moment with this il take anything if it helps , the shortness of breath withe the pressure in the gullet is so scary. Thanks xx

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I'm so sorry I know how awful reflux is I can get very out of breath after eating sometimes. I find fresh veg and grilled chicken is the best thing, and Veggie soup.

I do think you should get a 2nd opinion though and explain your fears and worries, sometimes Drs just don't get it, but some are really 😊. Also google reflux breathing exercises as there are what's called belly breathing that can help with reflux, lots of videos on you tube about it.

Good luck xx

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Thanks shanock have you tried the cider vinegar, and does it feel like all the regurgitated fluid seems to come from your nose ??? Xx

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Sometimes it does, my sinuses have been cleared now so hopefully that'll help me.

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How did you get your sinus cleared shanock? I do a nasal rinse every other day , I’m always afraid of over doing it and making matters worse, that’s if they can get any worse 🙄 thanks xx

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It's not cleared yet! I had a Septoplasty and fess and turbinate reduction 2 weeks ago, so I'm still in pain and blocked and have foul smell! Now I'm rinsing 3 times a day and using Sterimar. Ordinarily I rinse everyday and use Sterimar 3 times too. Rinsing everyday is recommended so I'd try that rather than every other. My ENT cons told me that's the best thing you can do rinsing daily. I also drink lots of hot boiled water.

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Ah I will try that see how it goes thank you so much for your help xxx

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I'm sorry that apparently little can be done for your reflux problems, I had the same from my cardiologist who will only use drug treatment for my permanent atrial fibrillation, even though it makes life uncomfortable for me, because my lungs are so badly damaged. He did say he would do the aneurysm if it got dangerous, and would 'keep an eye on it'. It all seems to come in a long string of one thing after another doesn't it. Keep as well as possible xx

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Hi carol hope you find some kind of relief soon🙏

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G'day Carol....you are having problems...aren't you....My wife Susan had a bilateral lung Tx eighteen months ago and during operation the surgeon severed the nerves controlling the muscles in the eosephagas and the right diaphragm.....Since that date my wife has been having severe re flux and digestive issues, We have been back and forward to the surgeons for the past 12 months,trying to find an answer to the problem. Like yourself they tell us that surgery is not an option due to the nature of the problem (severed nerves). We have had the camera down the nasal passage and the 24 hour monitor placed in the tummy, so hopefully when we return to the hospital this Thursday we will have some answers. The only thing we can offer you from our journey is what has assisted us.....We use lunch as our main meal and only have a light snack at dinner time (usually soup)...We abstain from bread (unless it is glucose free) and Susan has glucose free milk....this has helped greatly to reduce the re flux....but like yourself it is a possibility that we may have this issue for life....hope this info may help you

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Hisnoop dog , how strange I had radiotherapy to the bottom right hand lung and that is when all my problems reflux and digestive issues started, does your wife bring up copious amounts of mucus etc, it is worse than the cancer that was treated ,, let me know the outcome of your tests etc good luck your wife has all my sympathy xx

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Hi snoop dog , how strange I had radiotherapy to the bottom right hand lung and that is when all my problems reflux and digestive issues started, does your wife bring up copious amounts of mucus etc, it is worse than the cancer that was treated ,, let me know the outcome of your tests etc good luck your wife has all my sympathy xx

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G'day Carol...Susan suffers with mucus...not as severe as pre Tx but some days it is quite bad,others she is fine..I will do a post after next Thursday (8 days time) as we should have results for both the lungs and the tummy...Please look after yourself..........Will

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Thanks and good luck could you pm me to make sure I see how you got on , as I’m typing this I’m actually in bed the pressure in my upper tummy for past two days is horrendous, I can barely breath. Thanks will xxx

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Hi. My husband is going through the same thing. Choking on the mucous in his throat. They say he won’t survive a operation as he as severe copd. He is on nexium domperidine and gaviscon for the reflux and on the three a week antibiotic. He as been on these for over 12 months. No improvement . Hoping u find something out there. It is a horrible thing to have . Regards.

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try organic cider vinegar with honey twice a day, but make sure it as the mother.

I use raw health from amazon

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Hi Paris what is as the mother mean xx

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IT MEANS THE WHOLE OF THE APPLE CORE ,PIPS

IONLY TRY AND USE AS MUCH ORGANIC MEDICATION AS I CAN

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I had my oesophagus removed in 2012 (3yrs before being diagnosed with copd) my stomach was repositioned and part of it was used to form a new 'oesophagus' consequently there's no valve. After the op slow motility caused a lot of problems, I was only able to eat tiny amounts - five or six very small snacks a day (ie two ritz crackers and a small piece of cheese, or half a slice of bread, butter and marmite) even then it would back up, making me sick and for several months after the op mucus was a real problem when this happened. I'm rarely bothered by it now but - it took ages for my body to get used to my 'new plumbing'. I'm wondering if it might help if you tried tiny snacks for a while, to see if your digestive system can be retrained. I found savoury things less troublesome than sweet things, it was also best to avoid anything milky but I was gradually able to increase the amounts and reduce the snacking and am now back to three meals a day, smaller portions than previously but I have an additional mid morning coffee and biscuit, plus an afternoon tea and a finger of kit-Kat as well. The only medication I take is a dose of Gaviscon at bedtime, it helps to prevent bile reflux. I still have random bouts of 'usually' short lived tummy troubles, and am unable to bend forward if there's undigested food in my stomach, or if I've had a drink as there's nothing to stop it flowing out again but apart from that I'm fine. An oesophagectomy wouldn't solve your valve problem though and it might make other health issues worse even without possible problems with anaesthetics, and not everyone comes out of it as well as I have. Have you had a look on the OPA site, it might be worth asking if anyone knows of other treatments for the problems you're having. Do hope you find something that works for you.xx

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Sorry magpuss what is the opa site . Xxx

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Oh sorry, should have said - Oesophageal Patients Association. Good luck.

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Thank you so much xx

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Sorry to hear of your health issues. I have COPD and reflux . This may sound silly but I read about a natural cure for reflux that I have tried and it works. Try eating a Red Delicous Apple before bed. Many nights I only eat two or three slices. I also found that a little baking soda and organic apple cider vinegar is very helpful. I try to find natural relief when possible. It is worth a try.

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Thank you I will give those a try xx

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Hi, how often do you have the cider vinegar cocktail and do you use warm water xx thanks

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