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darryl7575
Regular Member


Date Joined Apr 2012
Total Posts : 32
   Posted 7/13/2012 2:42 PM (GMT -6)   
This is not my first post about my reflux issue, but still no answers..I have been dealing with reflux for 10 plus years, but currently my new symptoms are unbearable. Three or Four months ago, I started having pain in my throat. It isn't the kinda of pain that you would feel with strep or anything like that. It feels swollen. Swallowing is sometimes uncomfortable and I have felt that food almost gets stuck. I feel like I cannot take a deep enough breath. Like I cannot complete a yawn. I went to an ENT who says that my esophagus is red and swollen and reflux is likely the issue. Since then I have had a huge cardio work up. Chest CT, Chest Xray, Nuclear treadmill stress test, EKG and all the necessary blood work. I have palpitations and occasional irregular heart beat, but all checked out good. Even had lung functions tests.. All good..

I have been on every PPI there is over the last ten years, but nothing has ever taken it completely away. I have had upper endoscopy, which I was told that there is some slight irritation, but nothing too bad at all. They say I have a very small hiatal hernia, but again nothing to worry about. Sent me home with Protonix and said that I would be alright. This was months ago. Now this throat and breathing discomfort is every sing day and darn near every second of every day. I get occasional cramping and pain between my naval and sternum. This is so horrible. I do not sleep well at all. Only a couple of hours a night for a few days at a time. After a few days, I become so exhausted that I do eventually get one night of full rest. Most nights, I wake up feeling like I cannot breath and with my throat hurting. My airway feels sore every morning when I wake up. I take a deep breath and it feels like my windpipe is on fire. I have cut fatty foods, fried foods and everything that I have read causes reflux. I do not drink anything but water. None of this helps me. I sleep sitting up every night. Almost straight up and down. No help.. I had a gastric emptying test last week.. It was normal.. Just don't know what to think or do... I am miserable EVERY SINGLE DAY!!! Can reflux cause all of this with no relief ever? I am on Protonix and sucralfate. I also take Lisinopril and simvastatin for heart and cholesterol... I am desperate to find out what is the matter with me.. Would love to be able to feel normal and sleep in my own bed and not upright in a chair every night..

The next test on the list is a 24hr ph probe test.. Scheduled 3 weeks out.. While it sounds like a completely horrible test, I am anxious to get it done.. Anyonre else had this?

Post Edited (darryl7575) : 7/13/2012 2:46:22 PM (GMT-6)


mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 7/13/2012 3:07 PM (GMT -6)   
Hi there

Has surgery been mentioned? The pH probe test is often done as the work up to surgery, so you may make more progress once that result is in the bag. Most people seem to cope OK with the 24 hour pH test - you can search for manometry on this forum and read some people's experiences. But if you've reached the limits of medication then you should enquire about surgical solutions.

MMM
New stuff: GERD, Recurrent cystitis/Overactive bladder
Lifelong stuff: Food allergies/intolerance, eczema, asthma

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 7/13/2012 3:08 PM (GMT -6)   
PS: I guess you've already done the usual dietary changes and raised the head of the bed??

You may also want to read Sunbeam's thread on the Koufman diet as another option.

MMM
New stuff: GERD, Recurrent cystitis/Overactive bladder
Lifelong stuff: Food allergies/intolerance, eczema, asthma

darryl7575
Regular Member


Date Joined Apr 2012
Total Posts : 32
   Posted 7/13/2012 5:54 PM (GMT -6)   
Surgery has not been mentioned as of yet... Honestly, I am up for whatever works to fix this. I am so miserable all the time. I have read about some of the surgical options for fixing reflux and they don't sound very positive.. The whole thing is a disaster.... I will surely research manometry on the site.. thanks for the tip.. I am really nervous about his test... I just hope it is not yet another thing that comes back as "everything is normal" back to square one

ericapeace2000
Forum Moderator


Date Joined Mar 2012
Total Posts : 1110
   Posted 7/13/2012 6:42 PM (GMT -6)   
I'm in the same boat as u are. All my tests came back normal and I'm going to have to do both the ph test and mamotry test. I don't have the same symptoms as u do but I have the same outcomes of only minor irritation from endoscopy and normal tests. I lost a ton of weight trying to restrict my diet. I'm a little better but symptoms persist. Chest pain, upper stomach pain, pains felt through my back, mild heartburn sensation. I've been dealing with this for 7 years now and experienced a major flare up before my wedding. I'm also looking for answers just like u. I also do not love the surgery options. It's a mess that many people don't understand.
Diagnosed GERD, no other medical conditions (this one is enough)

darryl7575
Regular Member


Date Joined Apr 2012
Total Posts : 32
   Posted 7/14/2012 12:08 AM (GMT -6)   
I can totally understand the flare up prior to a life changing event. As I said, I have dealt with reflux as long as I can remember. In the last year, I have recently divorced after 14 years and become a full time single parent as my wife decided that she doesn't want to be a wife or a mother any longer. As you can imagine, my stress level is off the charts.. I an sure that has everything to do with the huge flare up that I am experiencing.. But, do you ever feel like reflux is not the answer? Like it is just the ole stand by the the doctors go to when they just don't know? Have you already scheduled your tests?

ericapeace2000
Forum Moderator


Date Joined Mar 2012
Total Posts : 1110
   Posted 7/14/2012 12:51 PM (GMT -6)   
What I'm confused about us how this reflux even starts in the first place. There are tons of people who eat and drink whatever they want and do not get a weak LES. Reflux caN sometimes be a symptom of other GI disorders like Celiac, or from gallstones or a stomach that doesn't empty well. But for a lot of us, it's this weak LES or hiatal hernia. I'm sure the preservatives in food contribute to it but I still just don't understand how the LES becomes weak in some people but not others. I guess it's like other medical problems. I don't see my dr. Until July 23, then I guess we will talk about the ph study and mamotry test. Already had mastic emptying study, chest x ray, ultrasound and blood work. Normal.

Stress is a killer on the GI system, so try and work on managing stress too. I'm sorry for what u are going through in your personal life and with health. We are here to support u.
Diagnosed GERD, no other medical conditions (this one is enough)

Hanna91
New Member


Date Joined Jul 2012
Total Posts : 6
   Posted 7/14/2012 5:24 PM (GMT -6)   
With the new swallowing / throat issue, has anyone mentioned Barret's oesophagus? Can occur in long-term GERD sufferers...

pharcyder
Regular Member


Date Joined May 2012
Total Posts : 69
   Posted 7/14/2012 6:06 PM (GMT -6)   
Have you considered taking an anxiety medication (like buspar)? I'm no doc, but I've read that anxiety can contribute to heartburn. My doc prescribed it to me for general anxiety.

Tandem Rider
Regular Member


Date Joined Jun 2011
Total Posts : 122
   Posted 7/14/2012 6:45 PM (GMT -6)   
I had many of your symptoms with acid reflux like not sleeping or sleeping sitting up. I took PPIs, watched my diet and was still miserable. After 5 endoscopies which were "normal" I had the 24 hour pH test (not as bad as it sounds.) My acid reflux was severe with a DeMeester score of 28. A score over 20 is severe. Gastritis was also a problem for me. Good luck.

darryl7575
Regular Member


Date Joined Apr 2012
Total Posts : 32
   Posted 7/14/2012 7:58 PM (GMT -6)   
Tandem... Have you gotten through your reflux issues? If so, what worked for you?

WJF
Regular Member


Date Joined Sep 2011
Total Posts : 273
   Posted 7/16/2012 7:25 AM (GMT -6)   
Hi, Here are a few tips that may be helpful. I have had success with some myself, the rest came from this forum. First I couldn't agree more you need a way to manage your stress. Stress makes pain more painful. I recommend mindfulness meditation, since breathing and yoga are out. Next there are natural herbs that can relieve irritation in your throat and esophagus: manuka honey, DGL, slippery elms. Eating an anti-oxidant rich fruit also helps to reverse damage of acid, a free radical, purple-colored grapes, berries. Wearing sunglasses or switching off the lights two hours before you sleep increases melatonin production, a hormone that can reduce inflammation in your gut and also help you sleep. Try eating a lighter dinner about 4-5 hours before you sleep. You may have less problem at night. Take care.

Also tell doc to examine for non-acidic reflux, it's possible if you still experience pain despite taking PPI.

DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 707
   Posted 7/16/2012 9:37 AM (GMT -6)   
darryl,
 
On a personal level, I went thru the same thing as you are 21 yrs ago. So I can relate to your pain, please forgive me for saying this but even though your world is shattered try to remember your childs world must be equally as shattered if not more. Lean on each other for strength and comfort, the bond this will create between the two of you will be stronger than anything.
 
Here are some things I have done to help heal my stomach and throat. I have added Gaviscon advance and garggling with baking soda as well.
 
I have barretts, gerd, gastritis, hiatial hernia, IBS, and poor LES valve. All of which have gotten worst over the years ( about 16yrs ). In June I was told I had short segment barretts and my LES valve was wide open, now the barretts are gone and my LES valve is partially open. I do still struggle with reflux daily, some days more than others. However I wanted to share what I feel has helped me make progress. I agree you will not cure gerd if you can not heal your LES valve (some say this can not be done but I disagree). I have gone thru all the same test as all of you have. Instead of writing a book on myself, it may be easier for people to just ask me questions that they may need. This is what I have done to try and heal the damage.

1.diet changes; all the normal.....eat 90% chicken and turkey for meat (fish if I could choke it down). Sweet potatoes, raw carrots, broccoli, spinach, blackberries, whole grains, . I stay away from soda, coffee, choc, chips, dairy, pizza, beer etc.
2. spirulina (loaded with chlorophyll)
3. sleep inclined on left side
4. manuka honey
5.aloe vera gel (lakewood brand has NO citric acid)
6. carafate (coats and protects from more damage)
7. Tums or gaviscon as needed
8.dexilant (ppi)
9. zantac in the evening (h2 blocker)
10. dgl (when i can't time the carafate)
PS: I know the honey and aloe will not stop the gerd, however they are proven healers so I believe they played a huge part in my progress of starting to heal my LES.


WJF
Regular Member


Date Joined Sep 2011
Total Posts : 273
   Posted 7/17/2012 8:00 AM (GMT -6)   
hi DOGGBONES,

Thanks for the comprehensive list. I have my own list and it is quite similar to yours. It is good to see someone has used the same method and also achieved significant recovery.

One thing: What's spirulina supposed to do?

DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 707
   Posted 7/17/2012 8:16 AM (GMT -6)   
WJT,
 
Spirulina (Pacific Hawaiian) gives you everything that leafy greens do, expect in a much more potent form. It provides more protien than meat and more chlorophyll than any veggie.
 
I must admit, I have to get better at taking it. If you mix a teaspoon of it with water it's like drinking thick nasty paint. Yummy, lol

darryl7575
Regular Member


Date Joined Apr 2012
Total Posts : 32
   Posted 7/23/2012 2:54 AM (GMT -6)   
Hey Guys... Thanks again for the replies.. I am still experimenting with diet and sleeping sitting up every night. Still.. no help. My gastrointestinal doctor has scheduled my 24 hour PH test for the 2nd of next month. I have had a rough weekend with it. It is Sunday night at 3:45(Monday morning I guess) and I have been up for over an hour. When I take deep breaths, I have pain in my sternum area. Almost like I am expanding something too far. Went to the ER last week with pain in that same area. They took blood and asked me questions and sent me on my way with pain pills. Yesterday, I don't know if I burped it up or what, but I was sitting here watching tv and suddenly had blood in my mouth. I spit it out, was dark red and once I spit it out and took a drink, there was no more. Anyone had this?

The thing that bugs me the most is that it is so constant. It hurts from the time I wake till I go to bed every day. Everything I have read about this seems that it should be inconsistent and not every second of every day.

Post Edited (darryl7575) : 7/23/2012 3:18:25 AM (GMT-6)


WJF
Regular Member


Date Joined Sep 2011
Total Posts : 273
   Posted 7/23/2012 6:56 AM (GMT -6)   
darryl7575,

I'm sorry to hear this. It sounds like you have a bleeding ulcer at that pain area. It is a medical emergency, you need to seek prompt treatment! Do you have "tarry" feces as well?

darryl7575
Regular Member


Date Joined Apr 2012
Total Posts : 32
   Posted 7/23/2012 1:03 PM (GMT -6)   
No, I have not had a tarry stool at all.. also, no more blood since that incident. I went to the er last week and once they find out that I have reflux, they stop all investigatiob and told me that I just need to see my GI dr. I cannot keep racking up $250 deductibles for er care just to be dismissed and sent home. I am not sure what I need to do. UGH!

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 7/23/2012 1:36 PM (GMT -6)   
darryl,
Has anyone suggested surgery?  It sounds as if you have enough trouble with your upper GI tract, and because your PPI resistant, it seems as if you'd be a good candidate for surgery.
Sorry you're struggling so...
Denise

jpvn2015
Regular Member


Date Joined Jul 2012
Total Posts : 63
   Posted 7/23/2012 1:45 PM (GMT -6)   
Since you are struggling so much, I also think you would be a good candidate for surgery. Usually surgeons don't like performing a fundoplication unless it's necessary, but I think yours is pretty necessary.

Ten years is a long time, and it's about time you say "good riddance" to this disease.

Hope you feel better shortly.
The advice I provide and present to you is solely based on research and doctor diagnosis. I am personally not a doctor. Going to a doctor is far better than listening to what I have to say.

I have experienced a lot over the course of years, and I am glad to give you some pointers to help you overcome your struggles.

darryl7575
Regular Member


Date Joined Apr 2012
Total Posts : 32
   Posted 7/23/2012 3:41 PM (GMT -6)   
Honestly, the surgery scared the heck outta me. I have read so many stories about it being unsuccessful. I have thought for a long time that I would definitely not do the surgery, but at this point, I am so sick of it that if the surgery is recommended, I will likely do it. Having dealt with it for so many years has been annoying, but it would come and go.. It has become so constant that it drastically affects my quality of life.

I just hope that the PH test offers some answers to my issues... Someone said early on this forum or another that the 24hr PH test is usually a deciding factor for surgery, so I guess I will know something soon... I hope!!

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 7/23/2012 8:05 PM (GMT -6)   
Darryl,
You may have already seen this in the Resources section, but here's a link to my early recovery journal. 
 
If you scroll toward the end, I make some comments about surgery failures and successes.  You might find them helpful.
 
The surgery isn't something to be taken lightly, but should be a last resort.  It sounds as if you're getting to that point.
 
Keep in mind that you get a skewed view of Nissen success rates when you frequent online forums.  Most people have the surgery, and go happily on with their lives and never post on a forum at all.  Generally people who seek out internet forums are having problems and and looking for answers.  There is a high percentage of positive outcomes, so don't let internet horror stories scare you.
 
I was also scared, and held off far too long.  As a result, I have permanent health problems due to overuse of steroids that were taken to counteract the inflammatory effects of GERD on my lungs.  I wish I'd had the courage to act sooner, before these things happened to me.  Like you, I was fearful as a result of reading frightening stories online.
 
Good luck with you decision!  This forum is a great place to get information and receive support!
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.”

darryl7575
Regular Member


Date Joined Apr 2012
Total Posts : 32
   Posted 7/29/2012 9:15 AM (GMT -6)   
Thanks for the link and support.. So far, my Dr hasn't even mentioned surgery. In fact last time I met with him, he said that with the upper endoscopy showing little irritation, he is not convinced that my issues are 100% reflux. Which is contradictory to what my primary care dr says. He says that he is certain it is my hiatal hernia causing the issues.. It sucks... Not only having no relief from medication or lifestyle changes, but to now to have my Dr say I am not sure it is the issue we have been treating all along. While the gastrointestinal Dr says that he is not sure that reflux is the issue, my PCP expects my 24 HR PH test to come back with results to the contrary. I couldn't be anymore frustrated!! I know that I hurt every single day, no matter what medication or changes I make. Just want it to stop!
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