Severe GERD / LPR

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lexic
Regular Member


Date Joined Oct 2012
Total Posts : 22
   Posted 10/10/2012 2:44 PM (GMT -6)   
I have been sufferring with GERD / LPR for past 7 years with a sudden onset I think related to stress. I have been on and off PPIs. Did endoscopy last year and the results were GERD and a small hernia.

My biggest problems are
- I get reflux any time I eat. Literally any time I eat something acid comes upto my throat and mouth
- Of course nights are horrible since in the morning I get mouth filled with acidic juices. My dentist has also told that otherwise healthy teeth and gums are affected by acid in mouth
- And the real biggest issue which is disturbing my life really is the bad breath due to gastric juices constantly playing up in the throat and mouth. This is the real big issue. I can live with other issues though highly inconvenient.

I also had asthmatic symptoms, sleep disturbance (getting up in panic mode feeling breathless), sinusitis which I think are all related to this problem.

PPIs are not really effective though when I take them they reduce it by 60-70%.

Doctors just throw higher dose of PPIs at me apart from one private referral when they performed endoscopy and confirmed reflux / hernia problem.

Apart from this problem I am fit and healthy.

What are the best options for me to proceed.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 10/10/2012 3:33 PM (GMT -6)   
Hi lexic,
Welcome to Healing Well!  It sounds as if you've been dealing with some pretty serious GERD symptoms for quite a while.  If you've taken PPIs without improvement, it certainly seems time to see a GI specialist for some testing to see what's going on.  It is certainly reasonable to expect that your doctor will get your reflux under control one way or another.
 
Here's a great resource with lifestyle suggestions and treatment options that you might find helpful:
 
You're in the right place.  Many here have varying degrees of reflux, and some have had surgery to improve their health and quality of life.  I'm one of those.  Here's my early recovery journal, and if you scroll all the way to the end I've written some thoughts about surgery.  Like you, my reflux affected my lungs negatively, which made treatment, and eventually in my case surgery, extremely important.
 
Hang in there.  There is help for GERD, and it's important that you persist until you find someone who will take your issues seriously and help you improve you condition in a meaningful way.  Stick around...this is a great place to get answers and support.  Good luck with your search for answers!
Best wishes,
Denise
 
Words of wisdom by Eckhart Tolle:
"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”

Post Edited (dencha) : 10/10/2012 6:27:09 PM (GMT-6)


lexic
Regular Member


Date Joined Oct 2012
Total Posts : 22
   Posted 10/11/2012 9:27 AM (GMT -6)   
Reading some other threads I am now thinking of doing a pepsin test.

I am also thinking if surgery is best option. But the GI specialist who did endoscope last year said that I could survive without that. But i think it is getting worse.

Not sure why NHS does not prescribe for pepsin test.

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 10/11/2012 10:47 AM (GMT -6)   
lexic,
 

Hello and welcome to HealingWell.  Glad you've found our online community. It’s a great place to connect with others traveling the same road...you'll find much support, encouragement and advice from others who understand.

I am not knowledgable re the Pepsin test but glad you found some other threads that addressed this topic. 

At the top of this page in the dark blue box you will see the word Search - click on this and type in the topic your looking for, in your case pepsin test and a whole list of threads re pepsin issues with pop up.  You can click on the threads you would like to read.

Also, have you thought of obtaining a second opinion from another GI specialist re the need for surgery ?

Keep on talking with the members in this great forum. 

Kindly,

Kitt

 


~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"Learn to get in touch with the silence within yourself, and know that everything in this life has purpose. There are no mistakes, no coincidences. All events are blessings given to us to learn from."~ Elisabeth Kübler-Ross

lexic
Regular Member


Date Joined Oct 2012
Total Posts : 22
   Posted 11/11/2012 10:48 PM (GMT -6)   
hello

I went to see my GP re my problem. They have asked me to again go on higher dose of PPI. I am also starting to use pillow wedge while sleeping. Just trying.

Interesting when I asked the GP about surgery they were shocked. They said that GERD is a very common condition and very very minor % actually go on for surgery. They are completely against it.

They even discouraged me from another GI consultation (NHS or private) asking what different are they going to find.

So far now I am stuck with the PPIs and wedge. Will update how I get on soon.

I have got the pepsin test kit but not yet collected / sent the samples. NHS does not seem recognise it.

lexic
Regular Member


Date Joined Oct 2012
Total Posts : 22
   Posted 11/12/2012 9:49 AM (GMT -6)   
any ideas how any of the UK patients were able to convince their GPs that the surgery or at least a referral was required in their case

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 11/12/2012 10:23 AM (GMT -6)   
Hi Lexic,
Even better than a pillow wedge is raising the entire head of you bed by using blocks of wood, bricks, bed risers, or a combination of any of those under the legs.  You should aim for 7-8" (around 20cm).  It works better than a wedge, and is actually more comfortable. The wedge is great for when you travel and are sleeping in flat beds.
 
Surgery could help you, but it's a last resort, and your doctors will try to control your symptoms with medication first.  They are correct in doing this.  Be very careful with your eating, and watch out for reflux triggers.  Also wait 3-4 hours after eating before going to bed. 
 
Good luck!
Denise
GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”Eckhart Tolle

lexic
Regular Member


Date Joined Oct 2012
Total Posts : 22
   Posted 11/12/2012 11:16 AM (GMT -6)   
dencha said...
Hi Lexic,Even better than a pillow wedge is raising the entire head of you bed by using blocks of wood, bricks, bed risers, or a combination of any of those under the legs. You should aim for 7-8" (around 20cm). It works better than a wedge, and is actually more comfortable. The wedge is great for when you travel and are sleeping in flat beds.

Surgery could help you, but it's a last resort, and your doctors will try to control your symptoms with medication first. They are correct in doing this. Be very careful with your eating, and watch out for reflux triggers. Also wait 3-4 hours after eating before going to bed.

Good luck!
Denise


Thanks Denise. Very useful and reassuring post for me. As you can imagine this condition occupies my mind constantly.

Two more questions if you could kindly help

a) does putting the risers below the legs of cot cause any problem to the cot / bed ? or it can survive even with the risers.

b) At what stage does one decide that medication does not work. Actually I have been prescribed continuous long term PPI. But I did not take it for last six months or so reading about the mal effects of PPIs. But now restarted since the GP insists. It has become slightly better. I dont get any pain etc. My only problem is mouthful of acid in the morning causing issues to gums, teeth and breath. Apart from that I dont have any other symptoms. Last year I did endoscopy - the GI consultant said I suffer from GERD and minor hiatel hernia.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 11/12/2012 3:22 PM (GMT -6)   
Hi lexic,
I'm not sure how a bed holds up that is a true bed with side-rails attaching the head to foot.  My bed is a metal frame with a headboard, and that works fine and holds up well.  I detach the headboard so it doesn't have to slant down when the legs are raised.  I just wedge it between the head of the bed and the wall, and it works just fine.  I can say, though, that I've used the wedge and the raised bed, and the raised bed is much more comfortable.  Also you won't slide down and get your stomach in a pressured position like you may with a wedge.  It's always flat, and though you may need to reposition yourself, you're never in a position that puts pressure on your stomach.
 
Since the surgery is an extreme fix (I had it in Feb. 2009 and am glad it did) that it's always better to try all other options first.  If you're actually getting a mouthful of acid in the morning, you definitely need the elevated bed.  Also...when do you take your PPIs?  Do you take one in the AM and one in the PM?  My PCP is a stickler on taking it an hour before dinner (on an empty stomach), as it's more likely to be effective when sleeping, which is when most reflux tends to occur. 
 
It took many years before I got to the point where my GI doc felt comfortable referring me to a surgeon.  Have you had testing yet?  I had my surgery because it was making my asthma uncontrollable.  My reflux wasn't as bad as yours, either.  You'll need an endoscopy, PH monitor, barium swallow, and manometry.  Some also require a stomach emptying test.  All these are critical in deciding whether or not you're a candidate for surgery. 
 
You don't want to let it go, though.  Especially if the reflux is getting into your lungs. 
Wish I could offer more help!
Good luck with your search for answers!
Denise
GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”Eckhart Tolle

lexic
Regular Member


Date Joined Oct 2012
Total Posts : 22
   Posted 11/12/2012 4:01 PM (GMT -6)   
Thanks Denise.

I did endoscopy last year. Even that referral to private GI consultant was provided to me after real pursuation.

GI consultant on Endoscopy confirmed GERD and Hiatus Hernia. GI consultant also said I should continue with PPIs, not sleep for at least 3 hours after eating, bed wedges etc. GI consultant also said that from the endoscopy I was otherwise very healthy and no other concern.

My concern is the mouthful of acid. I have told the GP about it. So for now I'll try the PPIs for a month and then may see GP again.

I take one PPI table 10 min before food in the night. I'll follow the one hour before food from now on. I have asked the GP many times in terms when / how best to take PPIs and have always been told that it does not matter. But I'll try your suggestion of one hour before dinner.

If I take PPI after food then I suffer almost acidic explosion - hence, I started taking it before dinner.

By the way I also suffer from reflux even during day time whenever I eat something - specially anything that contains sugar / milk. I used to suffer from asthmatic symptoms / chest pain / burning sensation / sinusitis. But these symptoms have gone away on their own. The only problem I have now is mouthful of acid, sometimes voice problem and excessive mucos and bad breath due to gastric juices flowing to mouth.

Post Edited (lexic) : 11/12/2012 2:07:38 PM (GMT-7)


dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 11/12/2012 5:14 PM (GMT -6)   
Hi lexic,
Here's a document that explains the importance of taking PPIs properly:
 
My GP believes it is very important to take the PPI before dinner because nighttime is when many have the most reflux because of lying down (no gravity to keep the acid down).  Here's what he told me after I sent him the article.  Since my major symptom was asthma, he was especially concerned about nighttime reflux.
 

"The article you sent puts forth one theory. However people who aspirate generally do so at night, not during the day.  I believe that taking the medication before the evening meal blocks nocturnal acid production which is stimulated by the evening meal and thereby can decrease chances of nocturnal aspiration.  Taking the medication the morning is less likely to prevent nocturnal aspiration than taking it before the evening meal. I recommend taking it on an empty stomach before the evening meal, giving it at least a half-hour, and preferably an hour, to be absorbed."

 

Before my surgery I was on 40mg Protonix (ppi) before breakfast and 40mg before dinner.  An hour before eating and on an empty stomach will make sure you get the best use of the PPI.  Also, the article recommends that the first meal after the PPI is high in protein.  You can read it in the article. 

Just be persistent...I took me several years to get my GI doc to agree to surgery.

Good luck!

Denise

 

 
GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”Eckhart Tolle

Post Edited (dencha) : 11/13/2012 8:20:59 AM (GMT-7)


ericapeace2000
Veteran Member


Date Joined Mar 2012
Total Posts : 1110
   Posted 11/12/2012 7:49 PM (GMT -6)   
One hour before a meal is definetly the way to go
GERD Moderator; Diagnosed GERD, no other medical conditions (this one is enough)

lexic
Regular Member


Date Joined Oct 2012
Total Posts : 22
   Posted 11/13/2012 3:41 AM (GMT -6)   
Dennis

Thanks a ton. This forum is the best source of information. This is exactly what I was looking for and even more. I could not get this from medical professionals for several years (despite asking for many times).

I feel I was completely ignorant for so many years. I was taking PPIs in all possible ways it should not be taken.

e.g. I used to take them as and when I had an episode of reflux or I remembered, I definitely did not take them an hour before a meal.

I hope this does not lead to some long term effects.

No wonder PPI has not worked for me to its potential.

I cant thank you enough.

lexic
Regular Member


Date Joined Oct 2012
Total Posts : 22
   Posted 11/13/2012 3:42 AM (GMT -6)   
ericapeace2000 said...
One hour before a meal is definetly the way to go


Thanks Erica. What a wonderful forum.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 11/13/2012 10:19 AM (GMT -6)   
Hi lexic,
It is frustrating that our prescribing practitioners aren't more informative regarding taking PPIs.  When I found document I provided in your link, I was amazed.  That's when I sent it to my primary care doc.  I'm still taking a 40mg Protonix before dinner because I have asthma/very reactive lungs, and even after a Nissen, the reflux isn't taken to zero (or you couldn't swallow), and it doesn't take much to get my lungs going.  Anyway, I was wondering if I should take it in the morning, rather than before dinner, since I'm only taking one. That's when he responded with the quote I included.
 
There's one other thing you could do.  Before my surgery (and as mentioned in the article) I was taking 300mg Ranitidine (Zantac) at bedtime to aid in breakthrough acid control.  Just another option you could discuss with your doctor if you continue to have trouble.
 
This is a great forum.  I found it when I was looking for information shortly before my surgery.
Glad you've joined us!  Don't forget that once you start taking PPIs properly it'll take some time to work.  Just be consistent and patient.  We'll be here as your sounding board, and to provide support.
 
Best wishes!
Denise
GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”Eckhart Tolle

ericapeace2000
Veteran Member


Date Joined Mar 2012
Total Posts : 1110
   Posted 11/13/2012 1:05 PM (GMT -6)   
This forum was my primary support and resource to get my GERD under control. That is why I am now a moderator, because I see the importance and impact it has.
GERD Moderator; Diagnosed GERD, no other medical conditions (this one is enough)

lexic
Regular Member


Date Joined Oct 2012
Total Posts : 22
   Posted 11/14/2012 6:11 PM (GMT -6)   
Hi Denise

Thanks a lot. I have now started taking the PPI an hour before the meal. Also for past one week I have been taking it daily.

I know it takes some time for this to be effective. But I can already see some good results. No acid in mouth in the morning. But if I take it in the morning I do get a bit of acid in mouth. So better for me to stick with one in night.

I will also explore the option of Zantac in discussion with my GP. I may go there after a few months. To be honest I really dont discuss much with my GP because normally they are dismissive, dont listen and clearly do not have enough info on details.

Is there anything else I could do. I was skim reading some stuff on the forum about alkaline diet, water etc. Do you have any specific view on these?

For now surgery will be on back burner. May be the surgical option become even better over time.

lexic
Regular Member


Date Joined Oct 2012
Total Posts : 22
   Posted 11/14/2012 6:11 PM (GMT -6)   
ericapeace2000 said...
This forum was my primary support and resource to get my GERD under control. That is why I am now a moderator, because I see the importance and impact it has.


Thanks Erica. Fully agree.
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