Still No Answers

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)

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

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.

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.

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... Have you gotten through your reflux issues? If so, what worked for you?

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.

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,

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?

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

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!!

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!