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Oesophageal & Gastric Cancer

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Acid reflux hell

Littleone88 profile image
26 Replies

Hey everybody.

New to this page.

Ii suffer with acid reflux.

Ii have a hiatus hernia which drs won’t operate on. It causes so much pain in my chest my throat burns constantly, nothing helps ii have two pantoprazole in the morning an 300 ranitidine at night. Gaviscon Alday!! Try to avoid anything that will upset me but seems even water does.

Please Must be something that will stop the burning sensation.

Dr suggest amitriptyline but it knocks me out and makes me so groggy ii don’t wanna live my life like that.

Thanks 😊

Leigh x

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Littleone88 profile image
Littleone88
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26 Replies
Buddy1962 profile image
Buddy1962

Teaspoon of honey at night. Don't have water with it. I didn't believe it either n I had chest pain.

Littleone88 profile image
Littleone88 in reply to Buddy1962

Any kind of honey??? Will try that tonight thank you So much. X

Buddy1962 profile image
Buddy1962 in reply to Littleone88

Helped me. I had homemade. I'm sure any kind is good.

Mauser1905 profile image
Mauser1905

Ideally for lesser or higher of the HH the root cause treatments are LINX band and Nissen Nissen fundoplication360 respectively. Subject to your individual underlying issues.

Was there any reason given when you mentioned "dr wont operate"?

Littleone88 profile image
Littleone88 in reply to Mauser1905

They said my ‘ tubes’ guessing windpipe or whatever they wrap around the hernia, not sure the professional word for it are to small, so respectfully if they op there would be a high chance it would become to tight and ii would then have swallowing problems.

Mauser1905 profile image
Mauser1905 in reply to Littleone88

Does the team know of LINX band laparoscopic surgery for the lesser of HH? Please do ask next time for the referral to consult on it.

Long term acid management is not a good thing. I got my cancer due to the same. Tendency is to keep experimenting with variety of PPI and other medicines which try reducing your acid quantity or strength and these do not deal with the HH. That's mechanical problem, can not be fixed with medicines. Requires either surgical fix or alike.

But then your consultant and surgeon may know best for your conditions, if you consulted with them and not only the GPs.

Littleone88 profile image
Littleone88 in reply to Mauser1905

Ii went and seen a dr at the hospital, am due to go back and see him again so will mention that thank you:

All so scary :(

Just want the hernia fixed so ii can have a normal life again:

Mauser1905 profile image
Mauser1905 in reply to Littleone88

Yes been there.

If I were you I would practice keeping peaceful mind and no stress anxiety at all without amy meds. That's helps a great deal to relax the muscles in the diaphragm.

Keep knocking on the doors of consultants till you earn the surgery or root cause fix.

Littleone88 profile image
Littleone88 in reply to Mauser1905

Really hard with 3 children but ii do try haha!! Yeah ii won’t give up trying till they do something to fix the hernia.

Will ring tomo and try get an appointment sorted to discus Linx just looked into never seen it before looks brilliant. Going to see about having that done.

I’m sure they’ll find a reason to shoot that down.

thanks for ur help.

Mauser1905 profile image
Mauser1905 in reply to Littleone88

Can only emphasise with your situation. With three children it's all the time bending and all activities which out pressure on the stomach which makes the GORD worst.

Hope you get resolved sooner.

Littleone88 profile image
Littleone88 in reply to Mauser1905

I had a 24 hour PH test done; and it come back 0 acid at all.

This was with me bein of my meds for 3 days clear. It took 2 weeks of not taken the meds for my symptoms to be really bad. With really bad chest pains throat pains etc.

But me and the consultant was unsure on why it would come back so low. Well not there at all. They want me to repeat the test: and take amitriptyline.

Have any input on this. Sorry to be a pain: u seem more clued up than my dr x

Mauser1905 profile image
Mauser1905 in reply to Littleone88

I have done 24hr ph and manometry as well.

The issue with HH is that its triggered when stomach is put under pressure.

With the 24hr test you kind of go into safe mode and do not do the exertion as you do normally. So it gives negative false.

A litmus paper test randomly done can prove otherwise. Try that and make a diary of that. Gathering of evidence.

I suspect if the 24hr test come negative then you will end up suffering same without any proper treatment as the diagnosis has been faulty.

Try to find when exactly your reflux triggers, meaning what activity you were doing immediately prior to that.

Along with HH is the sphincter is lax it needs some pressure being exerted on the stomach for the acid to escape through the sphincter and HH.

Mechanically activated and stress exaggerated.

Mauser1905 profile image
Mauser1905 in reply to Mauser1905

Why it came slow, perhaps your muscular age is still young? I dont know your age. But as I started towards 40 situation became worst over the time.

Littleone88 profile image
Littleone88 in reply to Mauser1905

Literally seem to have it all the time no matter what.

No matter what ii do.

I’m 31. Just give up with it all.

Frustrating seem to get nowhere with drs or consultants.

Will ring tomo see if they can get me in to discuss again.

Thank you.

Mauser1905 profile image
Mauser1905 in reply to Littleone88

I had same frustration.

The youngest patient for oesophageal cancer is in palliative care at 28 years of age.

I had the reflux all my life and cancer was found accidentally when finally GP referred to me to GI consultant in hospital.

Please don't lose hope neither stop chasing GPs.

Littleone88 profile image
Littleone88 in reply to Mauser1905

Yeah ii had endoscopy few months ago and discovered the hh and everything else looked okay other than the hernia it’s self.

Fingers crossed mine never turns into cancer . Couldn’t think of anything more scary , sorry you’re going thru that.

Mauser1905 profile image
Mauser1905 in reply to Littleone88

I didnt mean to scare you. I am past that point and 2 years survivor of the oesophagectomy due to oesophageal cancer. Due to acid reflux damage .

Hope you never have to go through any worse case scenarios.

Urging you not to take it casually, neither letting the process frustrate your correct diagnosis and proper treatment in right time.

Buddy1962 profile image
Buddy1962 in reply to Littleone88

Swallowing, coughing n choking called dysplasia. I developed it from a thyroidectomy and now I need stomach surgery. Good luck.

AlanWare profile image
AlanWare

I solved the problem by eating Chinese curry. I know it sounds contra but I only get reflux if I don't eat it. Good luck.

Littleone88 profile image
Littleone88 in reply to AlanWare

Don’t think ii have ever had Chinese curry lol.

Drs booked for 9.20 change up my meds maybe try a Chinese curry for t lol

I would be very wary of taking pain killers when the damage to tissues is the real issue that the pain is indicating? You wouldn’t take pain killers for a broken limb but leave it broken would you?

I was prescribed Lanzaprozole but experienced crippling side effects so, like you, find that pretty much every food and drink Causes pain and reflux. I have cut out meat (requires more intensive digesting and produces more acid) and don’t eat in the evening (usually).

Would be grateful myself for any advice.

Littleone88 profile image
Littleone88 in reply to VictoriaOpenshaw57

Ii went and see consultant yesterday. I’m going back for a Ph test and if acid shows they’ll op on my hh as nothing else is working.

Can’t believe how many people have the same problem and it seems we r all left dealing with it feeling alone and confused.

So happy for you that something is being done! Life is quite miserable with a continuous cough, choking and pain and knowing that cancer is a possibility if the condition is untreated. Hope it all goes well.

Littleone88 profile image
Littleone88 in reply to VictoriaOpenshaw57

Ii know it’s not nice, is the operation not a choice for u to help you??

Haven’t tried the range of other treatments yet. Hate visiting the doctors and dread more endoscopes. Will mention it when I need to see him again.

Littleone88 profile image
Littleone88 in reply to VictoriaOpenshaw57

Yeah ii know I’m the same, it’s draining isn’t it. But if we want results and the end game of no pain we gotta keep fighting :( x

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