Author Topic: Stomach problems? How does it feel?  (Read 10498 times)

Daisy1234

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Re: Stomach problems? How does it feel?
« Reply #30 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

Kerrikins

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Re: Stomach problems? How does it feel?
« Reply #31 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.

navydad

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Re: Stomach problems? How does it feel?
« Reply #32 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,,

Prairie Gal

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Re: Stomach problems? How does it feel?
« Reply #33 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

PrincessLeah

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Re: Stomach problems? How does it feel?
« Reply #34 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

Daisy1234

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Re: Stomach problems? How does it feel?
« Reply #35 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.

canuckcook

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Re: Stomach problems? How does it feel?
« Reply #36 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.