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Sjogrens Topics => Living With Sjogren's => Topic started by: skygirl on August 16, 2010, 08:35:27 AM

Title: Stomach problems? How does it feel?
Post by: skygirl on August 16, 2010, 08:35:27 AM
Hi ladies...
I was wondering if any of you have stomach problems, GI problems, hernia?
gas, heart burn etc?

How does it feel?

My stomach has been acting up for a month...and weird enough , but for he last 3 days I've been burping quite a lot...Like all the time...
I'm sure that's a sign my digestion is not working too good.

I need to set an appintment with a Gastro, but if that takes like 30 days to get one, I may try also to see my family doctor asap.

What problems do you have, and how do you manage, what medicine you take?

Monica

Title: Re: Stomach problems? How does it feel?
Post by: SLEEPY101 on August 16, 2010, 08:39:51 AM
I would go to your GP and if he thinks testing is needed then he can schedule tests right away.

I have a burning stomach and it feels worse after I eat certain foods.

I also had a bleeding ulcer. Symptoms are black stool or bleeding.

I took aciphex it worked really good.

Hope your tummy feels better soon
Title: Re: Stomach problems? How does it feel?
Post by: skygirl on August 16, 2010, 09:01:11 AM
So they give you a medicine for ulcer?

I think I may have had black stool...this week...
Title: Re: Stomach problems? How does it feel?
Post by: navydad on August 16, 2010, 09:17:50 AM
I;d say go see your PCP and then be ready for the hoop jumping ,,
Title: Re: Stomach problems? How does it feel?
Post by: skygirl on August 16, 2010, 09:33:19 AM
Oh ...whats PCP???

Primary care practician?

Boy I can't believe Ill be 40 next year...It seems a lot of things are popping up....

Monica
Title: Re: Stomach problems? How does it feel?
Post by: Scottietottie on August 16, 2010, 09:34:35 AM
Hi Skygirl  :)

I was sent to a gastroenterologist because I kept getting heartburn and could feel drinks like tea or coffee 'burning' on the way down. I also was either constipated or suffered diarrhoea for no particular reason. It was always 'feast' or 'famine' so my GP wanted that checked out too.

I had an endoscopy and a colonoscopy on the same day and was told my colon was fine so the dx was IBS and the other end had a minor problem. I have a hiatal hernia and developed esophagitis because of it. I now take Omeprazole everyday to neutralise my stomach acid and I prop up the head end of my bed so that gravity keeps the acid in the right place over night.

Take care - Scottie  :)
Title: Re: Stomach problems? How does it feel?
Post by: cmclien on August 16, 2010, 09:46:48 AM
I have been taking prilosec (omeprazole) for 20 years now!  Without it I have reflux which sometimes I feel and sometimes I don't feel it that way but instead have a sore throat.  Before being put on this medicine I had a stomach ache every day and lots of alternating ibs-c and ibs-d.  I took pepto bismol everyday for a number of years before a doctor put me on the omeprazole.  Depending on what I eat I still get alot of bloating but I attribute that to the IBS.

It has been a miracle drug for me personally.  I never saw a GI doc as my internist felt pretty sure my symptoms were enough.  Sometimes they will test you out on a similar drug to see if you respond before sending you to a GI doc.  Those meds will heal an ulcer if that is what you have. 

Your problem sounds recent though so you should probably get it checked out.  Hope you feel better soon.
Also, have you added anything new into your diet?  Sometimes adding the fishoil which is good for our eyes will give terrible stomach upset.
Title: Re: Stomach problems? How does it feel?
Post by: skygirl on August 16, 2010, 10:17:49 AM
Thanks guys,
My problem is recent...It has been happening this month.
So, I guess I'm going to see the primary care doctor first....

Monica
Title: Re: Stomach problems? How does it feel?
Post by: Liz D. on August 16, 2010, 10:51:49 AM
Hi Skygirl,

I had stomach problems very bad for six months last year.  The pain was awful and I was miserable.  Ended up losing 15 pounds from it.  After many trips and calls to primary doctor and rheumatologist, I was finally sent to a gastroenterologist.

It ended up that not only did I have acid reflux, but my bowels were all backed up at the transverse colon area.  I was still going to the bathroom, but obviously not enough.

The gastro doc put me on a 4 day colon cleanse -- which was an absolute killer, but worth it!!  Then I have to take Miralax every day and try to eat more fruit.  He also put me on 40 mg. Protonix for the acid reflux. 

I feel a WHOLE LOT better!!  Would never want to go through that again.  Unfortunately, with Sjogren's, so many problems pop up!!!   It is just like waiting for the other ball to drop.

Hope you find relief.  Get to the doctor as soon as you can.

Liz D.
Title: Re: Stomach problems? How does it feel?
Post by: kwolfsheimer on August 16, 2010, 10:55:23 AM
I've had stomach problems for years-- chronic diarrehea to the point that I couldn't leave the house.  I now take Lotronex.  It's a pretty controversial drug-- a "compassion" drug that was taken off the market years ago by the FDA because of a slew of deaths (mostly for incorrect prescription for regular IBS) and now only prescribed for 'hopeless" patients who have to qualify.  Sadly, I guess, I did.  It shuts down two of the three receptors of the small intestine.  There is a danger of ischemic colitis.  Sounds horrible but it has been a God-send for me!!  It costs about $800 a bottle for a month supply, but I only pay $250 with insurance  and I skip my afternoon dose to spread it out.  If I stop taking it, my stomach goes back to abnormal.

I also have severe acid reflux.  I've taken Nexium for years-- and my insurance really balks at that.  The burping can be a sign that gerd is coming up.  When mine gets bad, I can't keep anything down.  Other signs of bad acid reflux can be headache, nausau, a constant sore throat. 

I just got off my Diclofenac because I'm back to throwing up all the time.  However, I've been off the drug for several weeks and haven't gone back to normal.  That's one thing to watch-- if you take anti-inflammatories or Advil/Aleve regularly, you will have severe stomach issues.

Hope you feel better!  Good luck with the gasto doc.  I absolutely love mine!  I wish I could clone him!  I need a better rheumotologist.  :-\ Funny thing is that my gastro doc is a patient of my rheumy-- and he swears by him. 
Title: Re: Stomach problems? How does it feel?
Post by: navydad on August 16, 2010, 10:59:18 AM
Make your Appt yet?
Title: Re: Stomach problems? How does it feel?
Post by: bloodless on August 16, 2010, 11:54:27 AM
Ditto to everything Scottie posted. The only thing different I would say is that I feel like I swallowed a hot lava rock without my omeprazole. I found out by accident that I still need 2 before every meal or the lava rock comes back. Like and idiot I didn't refill it in time. (I use a mail pharmacy). I'm about to experience what it's like without tramadol for a few days....well, I still have darvocet if it's unbearable. Unfortunately it puts me to sleep. It's hard to work that way.
Title: Re: Stomach problems? How does it feel?
Post by: skygirl on August 16, 2010, 12:20:54 PM
OH talking about ibuprofen,
Advil/Aleve, yeah I have been taking that for any reason...and I wasn't feeling well two days ago I had 2 pills.

I already request an appointment with a Gastro...Im waiting to hear from them. But now I'm wondering if I should see the PCP first?
Or maybe both.

Oh by the way my diet is ...loads of coffee throughout the day, lots of carbs, cheese softer food, since my teeth are not that great
and animal fat from chicken and red meat. I do realize I don't eat vegetables , fibers or fruits. I guess that didnt help.

Monica
Title: Re: Stomach problems? How does it feel?
Post by: SLEEPY101 on August 16, 2010, 03:32:26 PM
Hi Skygirl

  After I had signs of bleeding I went to my PCP right away. She prescribe me the achpiex and referred me the the Gastro. The next day the Gastro Dr called and shcedule me for a endo/colonscopy. The scopy showed that I had a bleeding ulcer in my intestine due to my anti-inflamitory meds. He then took mee off that med and I continued with the achiphex.

I wouldn't wait if you have signs of of bleeding. This can be very serious. I think you should see your PCP because she can work with the Gastro to get tests before your appt. plus she can prescribe something. OTC tagament or zantac might help.

Here are some tips the Gastro Dr. Nothing with caffiene,no carbonated drinks, nothing spicy. You might want to try eating mostly soups and toast.

I am not sure if you are taking anti-inflammory meds you might want to call the Dr and they might want to stop taking it ASAP.

Keep up posted. Hope you feel better soon.

Stephanie
Title: Re: Stomach problems? How does it feel?
Post by: Daisy1234 on August 16, 2010, 09:28:00 PM
Pls keep in mind that if you take something like Pepto Bismol for your stomach upset, it will turn your stool black and that does not indicate any bleeding.  If you haven't taken that then that's another issue that needs to be looked at quickly by a medical professional.  I see a gastroenterologist very regularly.

I have severe Sjs, some of my symptoms include severe stomach, esophageal and bad constipation colon issues, normally backed up for about 10 days at a time but sometimes get a break and its only a week.  I have also had stomach ulcers (peptic).  I take alot of prescription meds for this aspect of my Sjs and also regularly get endoscopies with botox injections in my stomach and esophagus to help with the spasming.  I don't have any burping though.

Several years ago I also had my gallbladder out but that surgery shouldn't have happened.  It was never my gallbladder, but was my esophagus and stomach at that time which were causing my "attacks".

I do remember my mother having alot of burping though and she legitimately had gallbladder issues.  I never burped and still don't.
Title: Re: Stomach problems? How does it feel?
Post by: Lesleybird on August 17, 2010, 07:25:16 AM
  Hi,   With my Sjogren's I have had mild nausea every day for over a year and pressure in my upper abdomen and it is swollen. I think with inflamation and fluid around the membranes or something. You know that stupid ro antibody can affect the membranes around your organs.  I also have chronic gas and dry hard stool. Chronic joint pain, chest pain, rib pain, fatigue, there's a lot more.  But I'm just fine.....Really I am! Not.                                                                                                Lesley
Title: Re: Stomach problems? How does it feel?
Post by: navydad on August 17, 2010, 11:10:42 AM
  Hi,   With my Sjogren's I have had mild nausea every day for over a year and pressure in my upper abdomen and it is swollen. I think with inflamation and fluid around the membranes or something. You know that stupid ro antibody can affect the membranes around your organs.  I also have chronic gas and dry hard stool. Chronic joint pain, chest pain, rib pain, fatigue, there's a lot more.  But I'm just fine.....Really I am! Not.                                                                                                Lesley
Lesley,, you saved me the problem of writing a reply,, I am almost word for word like you,,, except i;ll get dry hard stuff then two minutes later I;m nothing but semi solid with a ton of water tossed in,,, I swear its backed up to my throat,,, But i;m fine too,, NOT,,, remember,, it might be IBS  LOL,,, NOT,,, idiots
Title: Re: Stomach problems? How does it feel?
Post by: bloodless on August 17, 2010, 12:55:51 PM
Lesley, Navydad, I've had intermittant diarhea and constipation but not to the extent you describe. I also will get a very sharp pain in my stomach about 20 minutes before I have to go. Does that sound familiar to you? I'm wondering if I should ask my doc about before it gets worse as it obviously has with you.
Title: Re: Stomach problems? How does it feel?
Post by: skygirl on August 17, 2010, 01:27:12 PM
Hey Daisy..

oh that's right...I took Pepto Bismo and 2 Aleve the day my stool looked black..
But my stool is looking normal again, I never had blood in my stool..

Okay I went to see the ,PCP.  The first resident doctor said I could be having Acid Reflux...
Then the internist doctor came .She gave me the look when I said I took Peptobism..
and prescribed  Omeprazale 200mg .She said if I dont' feel better in one week, she'll have to order tests..

It was good that she was able to fit me in next day!..because I the only  appointment I could find was with a gastro in a different clinic
for the 29th of next month. I will keep this one just in case.

is the test called endoscopy? or is it like ultrasound..? I hope is not painful.

Monica



Title: Re: Stomach problems? How does it feel?
Post by: SLEEPY101 on August 17, 2010, 01:38:12 PM
I think what test they will do will be base on your symptoms.

An Endo is not painful most likely you will be put to sleep. You just might have mild throat discomfort when you wake up.

I had a colon/Endo the procedire was not painful just the prep you have to drink the night before that clean you out. You are also put to sleep for these procedures. The only pain I had for a few days was worse muscle/fibro pain. This could have been due to the anesthesia.

How you feel better soon
Title: Re: Stomach problems? How does it feel?
Post by: Julie on August 17, 2010, 01:46:16 PM
Skygirl,

I have GERD and IBS.  I take Protonix daily that helps control the heat that I feel from the reflux. Without it, the heat can go all the way up into my throat at times.  I don't take anything for IBS, but I try to avoid foods that contribute to an attack.  Food preservatives - sulfites - MSG are a no no for me.  It's been years since I've eaten a salad because of all the preservatives that the stores and restaurants add in.  Garlic does me in for days.  And it's impossible to find anything prepackaged in stores without garlic from soups to frozen or boxed meals to most sauces - catsup, bbq sauce, etc.

Acute episodes of burping can be heartburn related, but it can also be a symptom of gallbladder problems.  I just had mine out in June.  I had a lot of burping and loud stomach gurgling along with the nausea and over all yuck feeling when I'd have an attack.  I have a friend who had to have his gallbladder out and had NO other symptoms except for uncontrollable burping.

I hope you get some answers and feel better soon.

Take care
Julie    
Title: Re: Stomach problems? How does it feel?
Post by: Daisy1234 on August 17, 2010, 04:51:01 PM
Hi again Skygirl:

Glad you were able to figure out the pepto bismol influence.  I'm hoping your symptoms are relieved by the prescription.  If they aren't, then the doctor usually orders one of the following tests.  I've had them all and all of them more than once and some over a dozen times.  There may be other tests they will order as well, but these are the most common:
If the drs suspect that you have gallbladder issues, they generally will order an ultrasound to check for stones.  Sometimes a barium xray is also done.  If they suspect something in your upper digestive tract, i.e. esophagus, stomach, then they'll likely have you undergo an endoscopy.  Endoscopies are fairly easy procedures if you get some sedation.  I've had endoscopies with sedation and without sedation.  In my opinion, sedation is much preferred.  No preparation for this procedure is required except fasting after midnight if you have an endoscopy the following morning, or if the procedure is in the afternoon, usually you're allowed a liquid breakfast before 8am then fasting until after the endoscopy is completed and the local freezing in your throat wears off.

If they suspect something in your colon or intestinal tract then they'll often order a colonoscopy.  You would be sedated for this procedure but the prep can be hard on some people.  The procedure itself is not usually an issue, because normally a person is quite sedated and doesn't even remember it.
Good luck, I hoping that your issue will be resolved instead by the meds.
Daisy
Title: Re: Stomach problems? How does it feel?
Post by: skygirl on August 17, 2010, 06:17:14 PM
HI Daisy, thanks.

OH boy..So  symptons of  acid reflux and gallbladder could be the same...

I wish she had schedueled an ultrasound or  test

instead of prescribing Prilosec... Grrrrr.

It could be Gall bladder too..

Monica

Monica : - ((

Title: Re: Stomach problems? How does it feel?
Post by: lindaneall on August 17, 2010, 07:21:54 PM

I am so grateful for the timing of this post.  I was just mentioning to my husband tonight that I have been having a LOT of problems with frequent belching and mild nausea. The last 3 days have been awful.  Besides the suggestions of gallbladder issues and heartburn, is it possible that the plaquenil could be causing this? 
Title: Re: Stomach problems? How does it feel?
Post by: skygirl on August 17, 2010, 07:55:24 PM
Oh Linda,
So you are having problems also...

Linda, I don't take plaquenil..as my bllood work is negative and
I have not had the lip biopsy...so I can't say ...

maybe someone else can chime in?

Title: Re: Stomach problems? How does it feel?
Post by: SLEEPY101 on August 17, 2010, 08:35:43 PM
I am not on Plaquniel at this time but celebrex gives me these symptoms. Are you on  Anti-inlflammatories?

I just started celebrex again 2xs a day on Friday. Starting Sunday I have had bad tummy aches,some vomiting,gas and burping. Can't if it is the flu or the meds.
Title: Re: Stomach problems? How does it feel?
Post by: Suzie on August 18, 2010, 12:06:11 AM
lindaneal I've been having horrible gut symptoms since starting Plaquenil 3 weeks ago.

Bloating, noxious (seriously) gas, but no burping. Tummy aches and small hard stools that don't flush!

I'm sleeping really badly because the gut discomfort wakes me up in the night. I don't have real pain, it's just the ughi-ness and lingering stools that the gut motion (peristalsis) keeps trying to shift.

I'm only taking 200 mg (mcg?) Plaquenil and I'm gonna stick it out. I take it after dinner like everyone advised.

Of course, I'm taking it to treat the fatigue and body aches. Waking up 7 times a night aint helping those problems any.
How droll...
Title: Re: Stomach problems? How does it feel?
Post by: lindaneall on August 18, 2010, 05:39:31 AM

Sleepy101,  No, I am not on celebrex. Plaquenil and Restasis are the only perscription meds I am on.

Suzie, I have been on 200 mg. of Plaquenil for 4 months. I get bloating and mildly queasy stomach, too. A few years ago I was on 400 mg. a day but had to stop after 8 months due to severe abdominal cramping and tinnitus (ringing in ears).  My rheumy wanted me to try it again now but at a lower dose to see if I could tolerate it. I still wonder if this gas, bloating, terrible burping, and pit in my stomach feeling is due to the Plaquenil.
Title: Re: Stomach problems? How does it feel?
Post by: Kerrikins on August 18, 2010, 07:16:10 AM
My Sjogren's has left me with hypochlorhydria (low stomach acid) and one of the main symptoms of that is chronic heartburn, go figure. Due to that I have also developed multiple food and drug allergies, 7 foods and ibuprofen! Also, I get pretty bad liver pain when I eat and have excessive belching, and bad breath when I eat meat since it doesn't digest. The only thing that levels me out is betaine HCL and digestive enzymes, it's been a miracle for me. I take the betaine with meals and the enzymes as needed in between. It controls the heartburn and liver pain most of the time, the belching, everything. I'm in a unique position of, my Rheum tells me that Sjogren's does NOT cause digestive problems, which is a big fat lie, so I haven't had any of this addressed professionally. The Dr  is really into not having all of your problems blamed on SJS, to the point of ignoring things that are caused by it I think. He completely discredits that these digestive issues and allergies started when the joint pain did...I've been on Plaquenil for a month and I think it's helping my stomach as well, I'm noticing less pain than before. I go back to the Dr next month for blood work and I have a feeling that he may finally address my liver issues then, something is probably off with me having this pain all the time.
Title: Re: Stomach problems? How does it feel?
Post by: Kerrikins on August 18, 2010, 07:17:45 AM
And oh yes, I have a hernia as well, in my naval area. I have no idea if it is contributing to any of my problems. It only bothers me sometimes.
Title: Re: Stomach problems? How does it feel?
Post by: Daisy1234 on August 18, 2010, 07:35:18 AM
Hi Kerrikins:

I have severe primary Sjs, with systemic involvement and extraglandular issues,  and along with all of the standard Sjs problems, annd a few others to boot, I also have very serious digestive issues caused by the Sjogrens.  This Rheumy is out to lunch if they tell you that Sjs and digestive issues don't go hand in hand.  I see a gastroenterologist regularly, to get botox injections in my stomach and esophagus because they are both spasming so badly.  I have severe gastroparesis, eroded esophagus, GERD, spastic colon, IBS, chronic constipation, nutritional malabsorption issues, vomiting, you name it in my guts.  I have become very food sensitive over the last few years as well.  I am currently on 21 different prescription meds daily, more when I am flaring, which adds us to about 43 pills per day and some other meds where I where patches and use pumps daily. 

Don't believe this rheumy about digestive upsets, just like regular ppl, not all drs are as knowledgeable about SJS as they should be.  Please get yourself the help you need by getting in to see a gastroenterologist.  I suggest that you check out this website:  www.sjogrensforum.com         and look under the symptoms tab on the upper right side of the home page to see how it describes gastro-involvement for Sjogies.
Hugs,
Daisy
Title: Re: Stomach problems? How does it feel?
Post by: Kerrikins on August 18, 2010, 07:52:13 AM
Thank you Daisy! I will look into the forum. I have been to a GI in the past for this pain, they did a gall bladder and liver ultrasound and said things looked ok, no gallstones. They have offered to "scope" my esophagus twice and I say no thank you, I don't like that idea. Of course, I went to this GI before I was diagnosed with SJS so maybe he would approach my pain differently if I went back....I've thought of bringing a print out about SJS digestive symptoms with me to the Rheum but I'm not quite sure how he would take it so I haven't done it ;) I find it hard to believe that he doesn't KNOW this, you know? Maybe if something is off at my next appointment he will listen. I just hope that he doesn't blame any skewed bloodwork on the Plaquenil itself and make me stop taking it, it is helping me.
Title: Re: Stomach problems? How does it feel?
Post by: navydad on August 18, 2010, 09:43:07 AM
GI doctors,,, it seems like the ones I see just seem to care for ederly patients that are having some issues,, I dont think there are many that are used to seeing people like us with GI issues and autoimmune diseases in general,,, its just a contiuneing search for the right doctor,,, my guts have been a mess for over two years,, now there at the point they hur constantly,, and just spasm constantly,, I never know if I have a bowel movement until I get up from the toilet, been told its IBS so many times I;m sick of it,, its not that,, we all here know that,, its like Fibro,,, its  a wastebasket Dx for people who they cant find anything wrong with them,, Inga and I agree that fibro may be a type of Neuropathy,, affecting the Small fiber nerves,, the symptoms are to closely related,,, the Fibro for men forum I go to occasionally tell the same story,, numbness tingling,, GI problems,, and they seem sastified that a Dx of fibro was named for them,,
  All I know is my guts are a mess,, my ears are infected now,, and I was sent home with a scrip for more ear drops,,
Title: Re: Stomach problems? How does it feel?
Post by: Prairie Gal on August 18, 2010, 12:25:09 PM
I've had several bouts of diarrhea; the one in 2009 lasted 4 months, but was quite mild.  In between these bouts, if I don't eat a TON of fiber, I'm constipated.   Whoever said it's either feast or famine is right!

My rheumy says "diarrhea is not usually an issue for SjS patients" and my gastro doc thinks there may be something that's "just below the range where it would show on the lab tests."   The latter has issued a 12-month standing lab order for stool tests since September 2009 -- my last bout of diarrhea concluded then.  I haven't had to take in any samples because I'm OK for now.  He did a colonoscopy January 2009; everything's fine: no IBS; no celiac.

We'll see what the future brings.   When doctors "practice" medicine, I think SjS patients are near the top of the list as those they practice on!   My conclusion:  there is a lot more drs. need to learn about SjS.

Prairie gal
Title: Re: Stomach problems? How does it feel?
Post by: PrincessLeah on August 18, 2010, 07:58:03 PM
When they do an endoscopy, they numb you, correct?  Does anyone know what they numb you with?

(My symptoms all started in a single day and may have been a reaction to lidocaine, a common anesthetic.  I'm worried that since I haven't been allergy tested and there's no proof that anything is wrong with me, ha, that a doctor won't take me seriously when I say I can't have lidocaine.  They think I'm being overly cautious and "hyper-reactive.")

PL
Title: Re: Stomach problems? How does it feel?
Post by: Daisy1234 on August 19, 2010, 06:01:46 AM
Not all endoscopies are done with sedation but all are done with a local spray anestetic to your throat area to permit swallowing.  My Gastro uses Versed as his sedation of choice when I get sedated for this procedure. 

I'm not sure which type of local anestetic spray is used for the throat area though.
Title: Re: Stomach problems? How does it feel?
Post by: canuckcook on August 19, 2010, 06:33:37 AM
hi All:
First, an introduction - I am the moderator of Sjogrensforum.com and apologize to anyone who has not received an answer from the doctor. Please, if this happened to you, send us the question again. I don't know what happened and put it down to errant goblins within my Mac.  I have sufferred with Sjs for many years and have multi-system involvement. The worst is GI. I have found help with my wonderful doctor, Nancy Carteron, who led me to other specialists for help. I find a daily dose of Miralax a must-have for poor motility, and Botox injection into the pyloris an occasional fix. I'm waiting for the botox in September (I'm now living in Canada away from the Bay Area so a wait is to be expected-although not too long it seems). I'm hoping the botox will increase the emptying time of the stomach and thus the bloating, fullness, pain and discomfort I suffer now.
I agree with so many of you that other speciaists are not up-to-date with Sjs and we must be our own advocates. At the risk of being branded a "nuisance patient" I take anything I can find on whatever subject is up for grabs and if the doctor is snooty about that, I don't want him/her for my doc and keep looking.  Luckily, I have a thoughtful internest who doesn't mind helping me.
It's a daily  challenge but each success is a boost and gives me some time free of those awful symptoms. I wish you well.