LPR/GERD What is it that you feel?

Thanks Kate for your reply. 

I’m sorry to hear that you suffer with this terrible disease.

It’s kind of reassuring to hear that I’m not alone in experiencing these symptoms everyday.

It strikes me that this is one condition  that you have to research and try many options before you find the one that works for you.

I’m currently reading The Acid Watcher Diet by Dr Jonathan Aviv. It does make sense and provides some good recommendations on what you should be asking for when you see a specialist.

I also read that it can take many months sometimes over a year to fix.

Do you suffer with a lump in the throat sensation?

Also is it worse later in the day? For me when I wake I seem to be symptom free until about mid morning ish before they appear. Then it’s there all the time 😔

Do you also experience a dry mouth when you wake?

Apologies for all the questions.

Don't worry about questions Simon, we are all hoping for answers, like you I don't feel too bad on morning but as I eat more food as day goes on it all erupts, I try to be careful about what I eat, no acid food, fats, very low fat milk, no wheat, very little bread, I find banana and apple help a little, I take slippery elm tablets with each meal, one probiotic and one milk thistle to try help my liver, soon I will add a good multivitamin to the mix, to be honest I think there may be nothing will fix this for me except surgery but doctors are not very keen to do it, I have been to many doctors in past year and had 3 endoscopies and two colonoscopies, a back mri, and a 24hour manometry test, the result showed night time reflux

Hi Kate,

Thanks for your reply. You wouldn't think that LPR could cause all these problems but it's not until you start reading about it that you're able to understand why you have to keep it in check.

It sounds to me that you're doing exactly the right things. I do hope that you're able to beat it.

I'm heading for a strict diet with PPI's one in the morning and night, Gaviscon advance after meals and before bedtime in the hope that i'll get some peace from it.

I know that PPI's don't cure or heal LPR/GERD but from what I've read they will surprise the acid to allow healing to take place. 28days is the minimal time it takes to start healing and in some cases three months, that's of course the pepsin is not leaking out.

Have you or anyone you know tried Alkaline water? 

Also do you find chewing gum helps? I do and I also get relief from the lump in the throat sensation and burning. I'm told it produces saliva which prevents the pepsin from activating.

Have you heard this too?

Thanks,

Simon 

 

Hi Simon

I doubt I'm doing everything right as I'm still suffering so much but I would do anything to be free of it, I often worry about what damage is being done to my oesophagus and stomach, I try to not think of it, I get too frightened, from all I read on posts tho, diet is a big factor, it's very hard to be good all the time

Hi Kate,

I agree it is very hard to be good all the time and just when you start to feel a little better i’ll eat something that puts me right back at the beginning.

I also find it strange that some foods are tolerated by others but for me they’re awful and cause great pain.

Do you have any luck with chewing gum? This seems to alleviate the discomfort for a while but then it returns.

Moving around a lot also makes me aware of the lump in my throat. I can be walking along and then out of no where the sensation will be there. Strange though that it’s not there in the morning???

It is scary stuff and this in itself can cause the stresses that make the situation a lot worse. Catch 22!

Did you have the trans nasal examination rather than the camera down the throat option? If so what was your experience?

Many thanks 

Simon 

Hi Simon

I don't know what trans nasal is, but I have had camera down three times, and also a panendoscooy where they put a long steel rod down to examine a part of the throat that cannot be seen on any scan, my throat was fine tg despite the fact that I had a very sore throat for, 4 months, the scopes revealed 3cm hiatus hernia and inflammation I also had a thoracic spine mri because of the awful pain between my shoulder blades

Hi Kate,

Apologies, it’s where they use a thin flexible tube and rather than go through the mouth they use the nose. Apparently it’s meant to bypass the gag reflux.

It sounds as though your specialists are trying to get all the answers they can in order to try and fix you.

I do hope you’re able to find some comfort from them being so thorough.

Simon 

Oh yes Simon had that done on first consultation with the ent surgeon, he suggested the panendoscooy and did it on Xmas eve, I couldn't swallow for almost a week it was so sore

Hi Kate...did the MRI show anything.  I was having upper back pain and still do on occasion but not as excessive as before, I asked for an MRI but was told I had to have an xray first....so I did, the xray showed nothing, but I did have a slight curve in my lower back, so they did not feel it was necessary to order an MRI.....grrrrr....!  I find it hard to distinguish if the upper back pain is muscle/nerve pain, or a reffered pain from GERD.  I do find when I apply heat it feels a lot better, so that makes me think it is more muscle related.  I question if I have a hiatal hernia as sometimes I feel like there is a dull pressure pain in my diaphragm especially if I am over working my muscles.  I have't gone for any testing to find this out....yet!!!  I spent all last year doing every other test under the sun so I needed a break as my stress levels were getting intense.  I will be going for a modified barium swallow to watch my swallowing and check to see if there is anything causing the lump sensation......if not then I will ask for them to investigate the esphagus and stomach.....sigh.....it just seems never ending and not an easy diagnosis.

Hi Linda

Mri showed nothing, the endoscopy showed hernia, you should push for endoscopy, at least you would know how things are in there and get peace of mind

They have offered it to me, but unfortunately I have heard nightmares about it, the worst one was my aunt's father died while having it done.  Not sure if it was the procedure itself or the sedation.....where I live they only do them sedated....my husband just had one a few months ago as he has suffered heart burn for over 20 years...and he felt quite a bit of it and he was sedated.....he had scarring on his esophagus, and some gastritis and they never did a biopsy.....so I am not sure that the doctors that do them in our area are educated on what to look for.....I would think if there is scarring on the esophagus a biopsy should have been done....so I don't want to go through all that and make my anxiety worse if they don't do the test proper......I will however ask for an upper GI x-ray, it is the lessor of the invasive tests and it will show if there is a hernia........so that will be my new year round of testing......after that, I hope to just move foreward with peace of mind and work to keep my body in tact and healthy as it can be.

I can understand your fears, I live in Ireland and as I said have had, 3 done with sedation and biopsy is done automatically here while doing the endoscopy, I hope you find peace of mind soon and relief from the reflux, let me know how you get on and best of luck

Thank you!  

Kate, it seems that you’ve been through it. I admire your strength! 

Having looked up panendoscopy it doesn’t sound at all pleasant. Well done you for having it done. I’m guessing the nasal endoscopy was a breeze in comparison.

I hope that you’re able to find a solution and I’m sure one will present itself.

It’s such a very difficult condition to overcome and there is so much information out there to take on board.

Please keep us all updated on your treatment.

 

Tks Simon, I will keep you updated, I am due back to gp in new-year and hope she will help me with a way forward to ease my worry, I wish you the best of luck and a very happy new year Tks for listening, kate