There Is No Logic To This Stupid Disease

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 12/29/2012 11:32 AM (GMT -6)   
Honestly I can't understand it. I can always eat this rice/millet cereal with lactaid milk for breakfast. Never a problem. This morning i had it, I slept well and didn't eat within four hours of bedtime last night. I slept on the wedge (and stayed on it all night) and I've taken my zantac and probiotics.

And yet this morning I had "the vapors" which means it's going to be a hard day. All I can think is that I went food shopping and maybe lifted/bended more than usual.

The hardest part for me is taking care of myself/timing my meals right. Oh and not moving too much after eating. When my son had reflux as a baby (and was on Zantac) I couldn't jostle him at all for at least a half hour. I think it's the same for adults. Staying very still, not reclining or bending.....

How am I supposed to live this way? I have a kid to take care of, a house to take care of, a big beautiful dog to take care of. How can i not bend over? Will I ever enjoy eating out again? If there is a God he will let me tolerate wine because how can I handle all this sober? (half kidding)

I need a full time LPR coach. I put these posts out there but I don't always get a reply and i need a buddy in this. Anyone interested??? Thanks for listening.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7185
   Posted 12/29/2012 1:25 PM (GMT -6)   
Hi thegspeak,
You are right.  There isn't logic to it, and it's unpredictable.  You're got a bad condition that nobody asks for.  I wish there was an easy fix, but there isn't.  Surgery worked great for me, but it doesn't mean I'll never have any symptoms again. 
 
It's important to come to a place of acceptance.  It is what it is.  You'll have good days and bad days.  You're not going to fix it and make it disappear with a diet, a wedge, or supplements.  Sometimes they will be effective, and sometimes they won't. You'll get yourself to a stretch of time when you're feeling better, and it will spring up again. 
 
I know it's hard, but if you can work on your attitude it will make it all more managable.  You may not want to accept it and are enjoying your fighting mode, but in the end, you can't become perfect again.  Even surgery will make big improvements, but you'll still have upper GI quirks. 
 
The sooner you can embrace your life...reflux issues and all...in all its imperfection, the happier you'll be. Do the best you can to eat right, follow anti-GERD/LPR guidelines, use whatever supplements that offer help to some degree, and look at the other good things in your life.
 
You are more than your GERD/LPR.  Embrace your whole self!
Good luck...hang in there!
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

Sweet Potatoe
Regular Member


Date Joined Oct 2012
Total Posts : 87
   Posted 12/29/2012 2:05 PM (GMT -6)   
The thing that has helped me the best is walking 15minutes or more after I eat. I read some where, walking at a normal pace helps your food go down and digest more easy. I hope you start to feel better. Us GERDIE Trooper have to stick together.
Anne :-)

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7185
   Posted 12/29/2012 2:13 PM (GMT -6)   
Hi Anne,
So true...walking is great...just walk slowly, or you'll splash that darned reflux even more.  Sticking together is the reason I stuck around here to try to offer support to others, the way I was supported when I was a mess.
Hang in there!
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

stacey77
Regular Member


Date Joined Dec 2012
Total Posts : 109
   Posted 12/29/2012 2:27 PM (GMT -6)   
im confused because of your LES is messed up would it even matter if you walk after eating or not? Woudnt acid go up anyways. Its all so confusing. Thegspeak...I understand what you are going through..its so frustrating. What do you mean by vapors? Like, postnasal drip? If so, that is the worst...and mine will be gone for days as well and then it comes back:( I am here if you ever wanna talk...I need someone to relate to as well.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7185
   Posted 12/29/2012 2:40 PM (GMT -6)   
Stacey,
Anything is worth a try.  What works for one, won't work for another.  I'm a big walker and before my surgery I could never walk after eating, because I'd always get reflux symptoms. I walk fast and hard, though, which is why I said to try it, but walk slowly. 
 
The thing is, what works for you might not work for thegspeak or Anne.  That's one of the maddening things.  There's no simple answer.  It's trial and error.  If something works for one, it could help another, or it could make them worse.
 
Nothing will close the LES except surgery to tighten it.  Some things can relax the LES and make it looser:
Foods that can relax the LES:
  • Fried (greasy) foods
  • High fat meats
  • Butter and margarine
  • Mayonnaise
  • Creamy sauces
  • Salad dressings
  • Whole-milk dairy products
  • Chocolate
  • Peppermint
  • Caffeinated beverages (e.g. soft drinks, coffee, tea, cocoa)

And some things create more acid and thus more reflux.

Foods that may stimulate acid production and increase heartburn:

  • Caffeinated beverages
  • Carbonated beverages
  • Alcohol
  • Spicy foods
  • Black pepper
  • Citrus fruit and juices (e.g. orange, grapefruit)
  • Tomato juice

Even so, everyone is different.  One person's terrible trigger food might not bother another person at all.  That's what's so troubling to thegspeak.  It's frustrating and annoying.  All you can do is try things, and see what works.

If you want to email each other or even talk on the phone, put your email contact info in your profile and choose the "make it accessible" option.  Then you can click on the envelope to the left of the post to communicate privately via email, or even share phone numbers.

This forum is a godsend...enjoy the support and encouragement!

Take care,                                                                                                   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

stacey77
Regular Member


Date Joined Dec 2012
Total Posts : 109
   Posted 12/29/2012 3:13 PM (GMT -6)   
I know everyone is different but i think we can all agree its frustrating cus we all wish sites would all say the same things and drs would all be on the same page! in a perfect world, right? ha. Anyways..well when i had my endoscopy done he said everything was fine..but took biopsys so i dont know if he was able to see my LES not working properly or not...but Thegspeak..i might try walking now after i eat..that might help me to! i hope you all have a great day:)

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7185
   Posted 12/29/2012 3:27 PM (GMT -6)   
Stacey,
The tricky part is that what works for one doesn't work for another...a trigger food for one person may not bother another person. There are certain foods that bother most people, hence the lists of GERD Triggers seem pretty consistent. 
 
Don't we wish there was a simple answer...
Denise
PS--the Gi doc takes biopsies to look for inflammation.  Sometimes it's there, under the surface and doesn't show up visually.  I never had any inflammation when I was tested (although I had times of painful esophagitis periodically before my surgery) during an endosopy.  You can have lots of LPR problems while the PPIs keep the esophagus safe.  Annoying.  It's tough to get an accurate diagnosis.
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) : 12/29/2012 1:31:53 PM (GMT-7)


thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 12/29/2012 4:26 PM (GMT -6)   
Thanks everyone. Unfortunately all this isn't what I want to hear. I'm used to tackling a problem and fixing it but I guess no amount of reading, no amount of discipline, no amount of effort will make this go away. Ever. I am still in a little bit of denial I think. But I do understand what everyone is saying... I get it. So I guess "the project" will be figuring out how I can suffer the least. I just feel like my body betrayed me...I'm angry that more isn't known about it! I'll bet all the doctors who say it doesn't exist, if they had it even for a day they'd change their minds pretty fast. The only thing that gives me a degree of comfort is the fact that I'm under the care of Dr. Kaufman and that she said I was a 10 on the reflux scale which doesn't seem terrible.

The fact that LPR sometimes can't be fixed with surgery confuses me. I don't understand why if the LES is tightened it wouldn't work? If I knew there was a chance I could get "fixed" with surgery I'd be able to let go and accept this a little more. Otherwise it's scary and horrible. And it's not helping reading all these horror stories with people alluding to offing themselves.

OK I am going to try. I feel good i got to vent. But i know I have to "man-up" and live in reality. Thanks again you guys are AWESOME!

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7185
   Posted 12/29/2012 5:31 PM (GMT -6)   
Hi thegspeak,
Surgery does help with LPR.  I'm a perfect example of that.  It's not that surgery doesn't work for LPR...it's just that there haven't been enough studies to prove it.  Here's one that supposes it works for the simple reason (as you've pointed out) both GERD and LPR arise from the same problem: acid reflux.
 
Here's another summary of studies:
A retrospective review of all antireflux surgeries between 1998 and 2008 provided a patient base for a survey in which patients ranked pre- and postoperative LPR symptoms in addition to patient satisfaction with the outcome. Of the 611 patients identified and sent the evaluation forms, 244 responses (40%) were obtained. The percentage of patients with symptom improvement after surgery were: heartburn (90.1%), regurgitation (92.6%), voice fatigue (75.2%), chronic cough (76.3%), choking episodes (83.1%), sore throat (82.9%), lump in throat (77.4%), repetitive throat clearing (72.8%), and adult-onset asthma (59.6%). Twenty per cent with repetitive throat clearing and 30 per cent with adult-onset asthma had no improvement in symptoms. Eighty-one per cent considered surgery to be a success.
 
In my view, these percentages point to a lot of improvement...for me it's enough to get the surgery and take my chances.  That's what I did, and I got great improvement with my asthma symptoms, in contrast to the study.  However, it was not adult-onset asthma.
 
From what I've read and learned in my search for answers, the reason that GI docs aren't more positive about the surgical option is:
1.  They are concerned that reflux is not what is causing the symptoms.
 
2.  Since surgery doesn't stop all reflux, but rather brings it back to normal, GI docs fear that the reflux that may continue could be enough to cause the same problems post-Nissen as they did pre-Nissen.
 
3.  Some LPR symptoms can be caused by other non-GERD related issues like allergy/sinus related postnasal drip, sore throat, asthma, etc.
 
4. GI docs prefer to use medication rather than surgery.  They are most concerned with the physical condition and safety of the esophagus and stomach.  They really aren't all that concerned about symptoms that don't harm the esophagus.
 
That list, I'm sure, is not complete, but there are a few of the issues that keep us from being recommended for surgery.
 
At times LPR sufferers find relief from the majority of their symptoms, but a few may remain.  Even those people prefer their post-op quality of life to their pre-op suffering.
 
You've got some work on ruling out other options, since this a relatively new situation for you.  That's an unfortunate reality.  Nobody is going to send you to surgery without trying to help you in some other way.
 
If the level 10 reflux reading you received in testing is a DeMeester score, then it's within the "normal range" which is less than 14.  I never tested higher than 14.8 or so, but still suffered lots of problems.  One time, during which I'd even been hospitalized for reflux-induced asthma, my DeMeester score was 4.  When my GI doc finally gave in and gave me the option of seeing a surgeon, he said that "probably a couple good reflux episodes in a day could be enough to get your lungs going".  Really?  Finally...I had surgery within 3 weeks of seeing the surgeon, after suffering for 6 years. 
 
If you can choose surgery with an understanding that it's not a perfect fix, but rather a huge improvement, it can be a great option for you.  I can eat pretty much anything I want...I have a sensitive stomach, and my wrap has been created out of that sensitive tissue, so it limits me a little.  I'm very happy that I had the surgery.  I had to take the chance that it would help...I didn't know if it would work, but I had to rule it out and go from there.  Thankfully, it was the right thing to do.
 
There is definitely a very good chance that the surgery would help you.  Keep it in the back of your mind.  It can be a great option for those with LPR.
Hang in there,
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

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 12/29/2012 5:45 PM (GMT -6)   
Thank you Dencha. That really helps :) I haven't had my ph testing done yet, Dr. Kaufman scoped me and took pics of my Larynx and Nasal pharynx She said my reflux score is a 10. even wrote it down. Could that be the Demeester score?

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7185
   Posted 12/29/2012 5:52 PM (GMT -6)   
I don't think you can do a DeMeester score that way.  It can only be attained through the PH monitor testing you're going to have.  I'd guess she has a rubric with a score of 0-??? (could it be 10 out of 10?) which is determined by symptoms that can be seen visually.  I would guess your reporting of symptoms could also be part of the score.  It's a great question, though!
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

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 12/29/2012 5:55 PM (GMT -6)   
January 17 is the big day I really get tested. I know it won't be comfortable but if it gets me closer to feeling better I'm all in.

BTW I am getting the UK Gaviscon tomorrow! I can't wait! I remember when I lived there that stuff worked really fast!

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7185
   Posted 12/29/2012 6:08 PM (GMT -6)   
I wish they'd make and sell that version here. We should start lobbying for that! Good luck with your pH monitor...it's definitely worth the discomfort. Hang in there!
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

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 12/29/2012 6:11 PM (GMT -6)   
Thanks Dencha. Mine is coming special delivery from UK I just have this sinking feeling my husband has the Spearmint flavor with him...I didn't realize there were flavors until it was too late!

stacey77
Regular Member


Date Joined Dec 2012
Total Posts : 109
   Posted 12/29/2012 6:22 PM (GMT -6)   
i have the uk gaviscon aniseed...it was expensive to order and i just let it sit there..i think it might work..but the taste stresses me out. lol i heard aniseed works the best though

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 12/29/2012 6:23 PM (GMT -6)   
I wish I knew that! Oh well. Stacey you are cray cray, anything is better than LPR, I'd drink piss if i thought it would help!!!! LOL

stacey77
Regular Member


Date Joined Dec 2012
Total Posts : 109
   Posted 12/29/2012 8:54 PM (GMT -6)   
bahahaha i would drink animal piss if i thought it would work. grose. ha. i know i am....sometimes i wonder if my craziness gave me this stupid shiz. uUGHHG.
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, July 22, 2018 7:27 PM (GMT -6)
There are a total of 2,984,364 posts in 327,214 threads.
View Active Threads


Who's Online
This forum has 161991 registered members. Please welcome our newest member, LIssah40.
417 Guest(s), 8 Registered Member(s) are currently online.  Details
goshawk, everseeking, mcspike, KC342, Aurora2013, Going for brachy, halbert, moleUC