Anyone Have Acid reflux from heck

[yankeeinthesouth]

I am wondering if anyone has uncontrollable acid reflux. Lately I keep getting this burping and burning up in my throat all the time, especially after I have eaten. I take Protonix 40 mg twice a day and have recently started taking Prilosec OTC in the middle of the day plus I take several doses of liquid Maalox during the day and usually in the middle of the night. I don't understand after all of the meds how I could still be having a problem. I am getting really worried about this so I made an appt with my GI on the 11th.

Patty

[Poochie]

Hi Patty,
Welcome to SW.  Yep, I have had the same problems in the past.  They led to esophageal spasms and they led to hospitalization. 

Don't put off this coming appointment.  GERD can lead to so many things and you don't need it.

Without the saliva we should be making, our digestive system really catches heck.

I have been on Nexium for years now, with an emergency stand by of Licocaine Hydrochloride Oral Topical Solution (Viscous). 

Let us know what your GI tells you.

Pooh

[lynnmarie219]

Hi Patty,
I also have GERD and take Protonix 40 mg once a day which seems to help for the most part. I'm glad that you are going to see your GI doc...it sounds like yours is definitely not under control even with all of the meds you are taking for it.

Good luck at your appt. and let us know what you find out!

[yankeeinthesouth]

Thanks Pooh. I am sorry to hear about your problems, but I guess I am not the only one with a major problem. I was starting to get worked up thinking that something has to be really wrong with me to need all the acid meds.


patty

[Patze]

HI Patty,

Yeah, I sure understand what you mean about taking so much meds and still having a problem.  I'm on 40mg of Zegerld for the reflux, and there are days that it doesn't touch the burning pain/reflux.  The gastro thinks that it's because of my thyroid, but I'm not really convinced about his observation. 

Good luck with the appointment, and keep us updated, okay?

Take care -

Patze

[yankeeinthesouth]

Hi Patze,
I have to ask what problem do you have with your thyroid, and why would that cause a reflux problem. I have never heard of anything like that.

Thanks,
Patty

[Patze]

Hi Patty,

I really don't know what he meant by that statement, other than I've recently been switched from Levoxyl to Armour, and he might think that the reflux will be worse until I'm "stable" again.  It's funny as I've had reflux really bad even when I was "stable" on Levoxyl, and used Protonix (I now use Zegerid, but there's no real difference between the two that I can tell).

I don't think he's well versed in AI's, but he seems open minded, and I'll see if he'll work with me.

Take care -

Patze

[yankeeinthesouth]

So is it the disease that causes the reflux, or the meds that most are on, or both. I have never in my life had heartburn or reflux this bad, so it has me really worried that there is something wromg with me. This is all new to me since I have only been diagnosed a few months ago. I can't seem to get any clear answers from the dr's that I have seen.

[Scottietottie]

Hi Patty 

I'm glad you have a GI appointment coming up. A lot of people with Sjogren's suffer from acid reflux but there can be other reasons. I have a hiatal hernia. Mine is not too bad but I know it is possible for it to get worse and that surgery may be required. SjS did not cause the hernia and reflux could be either the hernia or the SjS or a combo.
Helicobactor Pylori can also cause bad reflux so I expect your GI doc will test for that too.

I'm not a medic, so I'm not doing any dx-ing here! Please keep us posted about how you appointment goes.

Take care - Scottie 

[yankeeinthesouth]

Thanks Scottie.
I actually appreciate any response. the only things that I read on the internet about bad reflux has not been good. That is why I am curious if it is a problem with others that have SJS. I hope the dr. does something because it is a big problem for me. I can even sit down if I have eatin in the last few hours because it just burns too bad.

[Cheryllynn]

Hi, Patty,

Yes, I suffer with the acid reflux which is caused from Sjogrens.  Until you have this disease, you really don't know how saliva works in you body (aiding in digestion).  At least I never gave it a second thought until I didn't have any being produced.  What I have been doing to ease the problems is making sure I eat by 6 pm.  I try not to snack after this time also. I usually get off work by 4 pm and can have something ready for dinner by 5 or 5:30.  If I am having something that may cause the acid (spaghetti, pizza, chocolate, anything tomato based) I will eat a red delicious apple.  A friend of mine had mentioned this to me to try and now I make sure I always have these in house.  I eat this as a dessert which is helping in that department.  I have been on Protonix 40 mg for about 5 years now.  My GP would like me to get off of this but he doesn't understand the whole workings of Sjogrens.  I am in the process now of looking for a Rheumatologist.  I have a great one in Queen Creek, AZ but I moved to Pocatello, ID 5 yrs ago and am having a tough time finding one.  The only one that my insurance would cover didn't seem too helpful.  He said I had rheumatoid joints but unless I have any other issues I didn't need to come in. Now I don't need to have my hand held like a child over this but I knew that there would be other problems coming up that I would like to get some guidance on.  Oops, I am babbling.  Anyhow, Patty, try the red delicious apple and see how this will work for you.  Just remember to eat it as soon as you can after a meal and to avoid anything that triggers your acid.  In my case I have to watch milk, icecream, chocolate(ouch!) and if I do have a pop it has to be very early in the afternoon.  Good luck in this Patty!


Cheryl

[yankeeinthesouth]

Thanks Cheryl,
I don't mind the babbling, go on as long as you like. I have learned to get offended over very little. Thank you for the suggestion. I will try it. My sister read somewhere to try unsweetened apple juice before a meal. I tried that and it made my stomach burn. I am jealous that you can still eat tomatoes and pizza, my throat gets so irritated I have to stick with bland things.I haven't been able to drink pop or anything with fizz. And recently stopped my morning coffee because of the burning stomach., which really sucks for me.

[Patze]

HI Cheryl,

Let me welcome you to the SJS World and family!  Please do look around as you'll find amazing amounts of information, and oodles of great members too! 

No chocolate?  Wow, that would kill me, but you're right, it does bother my stomach, ugh.    I wish I could eat apples, but they kill my stomach too!  What is up with that?

Again, welcome, and I hope to chat with you soon.

Take care and good luck finding an amazing rheumy -

Patze

[ohiolady]

Patty,

I just had a procedure done called Transoral Incisionless Fundoplication.  I was taking a ton of medicine and almost every meal I had burning pain.  I was told the valve between our stomach and esophagus is a muscle and I had no muscle tone left.   They repaired the valve with this procedure.  You can go to endogastricsolutions.com and read about it.  I just had it done 8 days ago.  I've already cut back to half the medicine I was taking and the doctor plans on getting me off by four weeks.   Now, I never had this problem until Sjogrens so I don't know how it is linked.  I always thought it was totally my lack of saliva but the weakened valve is what let the acid come into my esophagus.

Anna

[Julzi74]

I have found that drinking lots of water or very diluted gatoraid with my meals has helped me with the burning and the feeling like the food was going to come back up!  I had real issues with burning stomach and acid reflux.  I was taking an otc antacid as a prn and then taking prevacid daily plus keeping maalox with me for another prn.  One day my stomache was burning so bad that I thought for sure something had happened so I immediately went intot he dr who gave me an anti spasm med for my colon saying that's what was causing the spasms.  So I took those for about 3 months.  Thats when I started to research chinese herbs for alternatives.  I found stomach peace and started taking that.  To this day I only have to take an otc ant acid about 3 times a week on average.  I eat way smaller meals now.  Mostly snacks during the day and then a normal dinner just sized way down.  I make sure to drink plenty of fluid.  When I wake up in the middle of the night I try to drink 20ounces of diluted gatoraid.  I am still able to drink my coffee and the burning has stopped.  When it does flare I just drink some water or diluted gatoraid and have a couple fiber crackers and that helps.  I have had stomache problems since I was a teen and I think it was all sjogrens related.  I have been scoped and probbed and blood tests done and nothing could be found but the symptoms were not in my head either.  I could wake up in the morning and throw up for no reason.  If I ate to much at dinner I could throw that up too!  I am so glad that I found a solution that worked for me.  It may not last but at least for now I am ok.  I hope you find something that works for you.  I eat a banana in the morning with my coffee then an apple and apple juice with prune juice mixed in, then a yogurt and soft boiled egg and fiber crackers.  Thats what I eat throughout the day until dinner.  Maybe its the apple that is helping too...