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Sjogrens Topics => Living Life In Spite of Sjogren's => Topic started by: yankeeinthesouth on January 03, 2010, 08:13:22 AM

Title: Anyone Have Acid reflux from heck
Post by: yankeeinthesouth on January 03, 2010, 08:13:22 AM
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
Title: Re: Anyone Have Acid reflux from heck
Post by: Poochie on January 03, 2010, 09:13:37 AM
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. ;D

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
Title: Re: Anyone Have Acid reflux from heck
Post by: lynnmarie219 on January 03, 2010, 09:30:45 AM
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!
Title: Re: Anyone Have Acid reflux from heck
Post by: yankeeinthesouth on January 03, 2010, 10:02:39 AM
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
Title: Re: Anyone Have Acid reflux from heck
Post by: Patze on January 03, 2010, 01:33:25 PM
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


Title: Re: Anyone Have Acid reflux from heck
Post by: yankeeinthesouth on January 03, 2010, 02:15:24 PM
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
Title: Re: Anyone Have Acid reflux from heck
Post by: Patze on January 03, 2010, 03:44:42 PM
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
Title: Re: Anyone Have Acid reflux from heck
Post by: yankeeinthesouth on January 03, 2010, 04:27:13 PM
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.

Title: Re: Anyone Have Acid reflux from heck
Post by: Scottietottie on January 03, 2010, 05:30:05 PM
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  :)
Title: Re: Anyone Have Acid reflux from heck
Post by: yankeeinthesouth on January 03, 2010, 05:49:58 PM
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.
Title: Re: Anyone Have Acid reflux from heck
Post by: Cheryllynn on January 03, 2010, 05:58:18 PM
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
Title: Re: Anyone Have Acid reflux from heck
Post by: yankeeinthesouth on January 03, 2010, 06:36:33 PM
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.
Title: Re: Anyone Have Acid reflux from heck
Post by: Patze on January 04, 2010, 04:26:53 AM
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!  :D

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


Title: Re: Anyone Have Acid reflux from heck
Post by: ohiolady on January 07, 2010, 03:39:44 PM
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
Title: Re: Anyone Have Acid reflux from heck
Post by: Julzi74 on January 07, 2010, 06:01:59 PM
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...
Title: Re: Anyone Have Acid reflux from heck
Post by: yankeeinthesouth on January 07, 2010, 06:10:50 PM
Thank you Anna and Julzi. I try to drink water all the time most days it is almost a gallon. I am beginning to think that something is wrong, and I have a GI appt on Monday. I have started eating very small meals like just a cup of something and that has helped a little. I have to stand straight up for at least an hour after eating and that seems to help to but I am tired of standing all day. Well hopefully Monday I will find out something.
Title: Re: Anyone Have Acid reflux from heck
Post by: Julzi74 on January 07, 2010, 07:15:21 PM
i can't seem to get enough water either-it started when i was in my real early 20's and took accutane for my acne-then just before christmas i guess i had a flare up as i just can't seem to get hydrated-i am still meaning to try cocoanut water, just haven't found it yet-i am up to about 150 ounces of water, i chew gum all day which does help with reflux too-but the sores in my mouth persist and if i go to long without drinking then they hurt real bad-my lips are the worst as they sting, burn and feel so tight and dry no matter what i do...i think i am stressed out as my hubbers is out of town for 26 more days and i have an active teenager that needs shuttled everywhere-so add that in with the fact that i am still trying to work and yah i am stressed and exhausted-i only work 15 to 17 hours a week but thats like 80 hours to me-i would love to find out if i can get disability but i don't think i am "sick" enough yet....
Title: Re: Anyone Have Acid reflux from heck
Post by: Patze on January 08, 2010, 04:31:29 AM
Hi Patty,

Good luck at your doctors on Monday!  And don't forget to update us, okay?


Patze
Title: Re: Anyone Have Acid reflux from heck
Post by: saranski on January 08, 2010, 03:17:54 PM
Hey Patty,

Yep, count me on the reflux train!!! I have GERD with esophageal spasms.  I have been on Prevacid 30mg twice daily for almost 1 year now, the reflux is much better, but when I overeat, which is often, it is still present.  I had an EGD, an esophagealgastroduodenscopy, done.  Easy procedure, you are out of it thanks to wonderful meds!!!  I am also taking Nitro for the esophageal spasms, which, thank GOD have gotten much less frequent.  I can actually go a 1-2 months in between episodes now.  I have also had esophageal manometry done, not so fun, but it did pinpoint where i am having the spasms and helps to determine meds that may help.
Try sleeping sitting up, at least 8-12 inches.  Milk can also help.  Try not to eat within 3 hours of going to bed.  My GI has me taking Maalox chewables for inbetween issues with the reflux. 
I am not supposed to eat chocolate or drink soda, but that is like telling a fish they can't go in the water!!!!!!!! It ain't gonna happen!!! ;D 

Keep us posted on your appointment!!!!!
Sarah
Title: Re: Anyone Have Acid reflux from heck
Post by: yankeeinthesouth on January 13, 2010, 07:26:26 PM
Hi all,
Well I unfortunately ended up in the hospital last week. On Friday I was having so much of a problem that I could not eat even a few bites of yogart without burning and it wanting to come back up, My hubby callled the rheummy who dx'd me and asked if he could help. well here I am. several tests later,and they say I have a hiatal hernia and I might have a problem with my gall bladder. I am feeling a little better with some of the meds they are giving me and hope to come home tomorroow or Friday.
Thanks everyone for all of the advice, I appreciate it so much.



Title: Re: Anyone Have Acid reflux from heck
Post by: Bernice on January 13, 2010, 08:38:44 PM
Yall I ate some peanuts today and here I am this late at night thinking I might need to go to the hospital because I doggone stomach is hurting and just plain upset. I used to eat nuts all the time with no problem, but this happened the last time too, so now I know Not to eat another nut of any kind for the rest of my life!!!!!!!

Between burps and pains I am most misable!!!

What on earth can this possibly be???? ??? ??? ??? ??? ???

This is not like normal heartburns, but have more pain and bloated in stomach,  I look like I'm three months preg!!!!!!!!

Title: Re: Anyone Have Acid reflux from heck
Post by: Patze on January 14, 2010, 04:13:04 AM
Sending you tons of gentle

( ( ( ( ( H U G S ) ) ) ) )


Patty!  And I sure hope that you feel better soon!



Patze
Title: Re: Anyone Have Acid reflux from heck
Post by: Chickpea on January 14, 2010, 11:21:08 AM
Hi Patty

So sorry to hear that you've been so unwell and ended up in hospital.  It's good to hear that your husband acted so swiftly and got you the help you needed.  He must have been really worried about you.  Let's hope the new diagnosis brings some effective treatment with it.

Let us know how you are doing when you get home. 

Thinking of you - Chickpea

ps Did you take your computer into hospital with you? 
Title: Re: Anyone Have Acid reflux from heck
Post by: yankeeinthesouth on January 14, 2010, 12:29:24 PM
Thanks Patze and Chickpea.
I appreciate the support. I just got my computer yesterday because I did not think that I would be in here this long, but my rheummy wants to make sure that he is not missing anything. My gallbladder test was normal but I had a setback yesterday because of some pain meds that made me sick as a dog. I am so upset today because I thought I might come home but after last night my stomach is upset again and my throat sore from vomiting.....aaaahhhhhhh

Do any of you feel like you take one step forward and then 6 steps backward, or that you can never be in front of the 8 ball????

It just seems that way to me with this disease that you get a little better only to have a flare and never end up back to where you started.

They put me on some new meds Reglan and Carafate to try and help with my problems, they had seemed to be helping a little so far so hopefully I will keep getting better. I just have to follow up with my GI dr when I get out.
Title: Re: Anyone Have Acid reflux from heck
Post by: Poochie on January 18, 2010, 10:24:17 AM
Patty I sure hope the docs get you sorted out and you are soon feeling better.

Bernice do you have Diverticulitis?  (sp)  What you just had sounds a lot like the attack I had several weeks ago.  It started out with the bloating and what I thought were gas pains.  The pain never stopped until the next day, just kept getting more severe.  About the time I was ready to go to hospital they started to subside.  I don't know what started it, but I hope to heavens I NEVER have another one.  Take care.

Pooh 
Title: Re: Anyone Have Acid reflux from heck
Post by: harlin on January 18, 2010, 12:08:03 PM
Patty
Yes I have Acid reflux from heck. Still waiting on a call from my GI doc. Ph study done dec 28  and still no answer. He left me message on Friday that he wanted to s/w me but hasn't called me back yet!
Still waiting
harlin
Sorry  you are having so much trouble seems to go along ???
Title: Re: Anyone Have Acid reflux from heck
Post by: yankeeinthesouth on January 19, 2010, 08:49:12 AM
Thanks all,
I am home from hosp now. Thank the Lord. Still having a few problems but I am better. I guess the meds are kicking in, Nexium 2x per day, Reglan 4x per day and Carafate 2x per day. I follow up with my GI tomorrow. I might have to have a PH study done as well and a test to see if my esophagus is spasming or stomach for that matter. They think that my stomach is not moving the food into my small bowel fast enough.

My rheummy thinks a lot of my problems are nerve related because I have numbness and tingling in my hands and feet so he thinks that some things are not getting correct nerve stimulation. I don't know what kind of treatment he is going to want to do ie steroids, ect. I have a follow up with him next week.

I will keep everyone posted on progress. Thank you all for your concern and suggestions.
Title: Re: Anyone Have Acid reflux from heck
Post by: Chickpea on January 19, 2010, 02:49:50 PM
Patty - so good to hear that you're home from hospital and that the meds are kicking in. 

Let us know how things go and what treatment plan your rheumy comes up with. 

You're in my thoughts - Chickpea
Title: Re: Anyone Have Acid reflux from heck
Post by: harlin on January 20, 2010, 12:19:27 PM
Finally heard from GI doc. I had one abnormal day and one normal day, what the heck does that mean. He put me on 40 mg Nexium 2 times a day now. Back in 6 weeks.
Good luck it is rough!!
harlin
Title: Re: Anyone Have Acid reflux from heck
Post by: yankeeinthesouth on January 21, 2010, 09:44:54 AM
I guessing you have a day that the acid didn't bother you. Was the pH study painful? I have never had it done but my GI dr wanted to do it to me a few months back and it sounded too scary for me at the time.
Title: Re: Anyone Have Acid reflux from heck
Post by: harlin on January 25, 2010, 12:46:59 PM
Hi Yankee
Yes the PH study was very painful for me. GI said that 10% have problems. Of course only me. I couldn't eat for about 7 days. The food kept feeling like it was getting stuck half way down. I would get alot of pain then it would go down. I hope I don't ever have to have it again.

I have lost 32 lbs in about 3-4 months. Getting to be skin and bones. Therapist noted it this morning. Weigh 122 and am 5'5
Makes me ill just to think of food. I have to force myself to eat 3 meals. Don't want anything not even chocolet. There is something badly wrong with me that I don't want chocolet. I was a true chocoholic! :D

Will be glad when blood tests are done to see what they show.

Good luck and hugs
harlin
Title: Re: Anyone Have Acid reflux from heck
Post by: yankeeinthesouth on January 26, 2010, 07:22:18 AM
Hi Harlin,
That is not good that the ph study was that painful for you. I am surprised that they are not concerned with your weight loss.
I went to my regular GI dr last week and he seemeed to just brush me off. told me to come back to see nurse practitioner in 3 weeks to see how the meds are working.
I am so sick of dr's acting like there is nothing wrong because tests came back normal. I wonder do they do this stuff to men who have these diseases?
Title: Re: Anyone Have Acid reflux from heck
Post by: Bernice on January 26, 2010, 09:45:56 PM
Shoot I'll take the weight loss without the pain, though!

My face is starting to look like it is bloated or something! Behind looks like someone has pumped too much air in it! Lawd the thighs!! They have rolls!!
Is it possible for weight to go back and forth within a matter of days???? I do believe my weight is changing within days. Some days I am not that bid then when I look again I seemed to have swollen. I am going back and forward between size 7/8 to 9/10 from one day to the next.

My doctor is really working my nerves, he don't seem to think it's an issue he just brushes me off when I mention it or make promises to address it later! Later????  ::) ::) ::)
Title: Re: Anyone Have Acid reflux from heck
Post by: ohiolady on January 28, 2010, 11:28:49 AM
The ph testing as well as mannometry were not at all painful for me.  Annoying but no pain.  I dreaded and was so anxious and it turned out to be not bad at all.

Anna
Title: Re: Anyone Have Acid reflux from heck
Post by: saranski on January 28, 2010, 03:33:01 PM
well i thought my acid reflux was under control, I take prevacid 30mg twice a day for the past 1 year. the laryngitis i keep getting I thought was related to the sjogrens, i went to ENT today and he put a scope down there to look at my vocal cords, they are fine, it is the muscle that controls the vocal cord, it is severely inflammed from stomach acid coming up.  He said that once meds have been tried, etc it is time for surgery, a fundalplication.  I see the surgeon next week:(   If you don't get it under control it can cause cellular changes and can lead to cancer.
Title: Re: Anyone Have Acid reflux from heck
Post by: harlin on January 29, 2010, 10:16:10 AM
saranski
I have never heard of this a fundalplication. Sounds complicated. Let us know when you go to surgeon. Hope this is not in my future. I have had enough.
hugs harlin
Title: Re: Anyone Have Acid reflux from heck
Post by: yankeeinthesouth on January 29, 2010, 02:44:51 PM
Saranski,
I am sorry to hear that. That sounds scarry, but I guess it can get worse. Did your dr say why SJS causes such a problem that it can't be controled with medicine?
Good luck with your appt.