Author Topic: How many have digestive woes ???  (Read 10786 times)

BonusMom

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Re: How many have digestive woes ???
« Reply #15 on: April 19, 2010, 07:51:59 PM »
Gastroparesis (with lots of vomiting and little nausea); GERD, constipation.  You're in good company with likes of us Sjoggies!

Patze

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Re: How many have digestive woes ???
« Reply #16 on: April 20, 2010, 02:06:54 AM »
Same here, I also have severe GERD, eosinophilic esophagitis, and the bowels go from one extreme to the other ugh.


Patze
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lori

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Re: How many have digestive woes ???
« Reply #17 on: April 20, 2010, 03:40:32 AM »
yes- had them most of my life- ibs, gerd, diverticulosis that sometimes goes into infection ( diverrticulitis), nausea...yep- got em

karleesgranny

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Re: How many have digestive woes ???
« Reply #18 on: April 20, 2010, 05:57:10 AM »
Yes me too me too....... gerd Ibs problems swallowing I have had my esophagus stretched twice in the past year.......nausea is another issue I deal with.  It helps to know that you are not the only one with crazy stuff going on in your body......

Prairie Gal

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Re: How many have digestive woes ???
« Reply #19 on: April 20, 2010, 01:28:42 PM »
I've had several episodes of weeks-long diarrhea.  Otherwise, I'm close to being constipated.  I've managed that, so far, by eating LOTS of fiber (fruits and vegetables) every day, plus I add wheat bran, oat bran, and ground flax seed to my 9-grain hot cereal every morning.  I take a Prilosec at least 20 minutes before eating breakfast.  Lack of saliva means we have problems with acid.  So far, no GERD; I'm keeping my fingers crossed.

I sometimes have a bit of difficulty swallowing dry foods, so keep water handy.

Prairie gal

Katybarstool

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Re: How many have digestive woes ???
« Reply #20 on: April 21, 2010, 02:19:45 PM »
Hi

I have IBS and GERD too, and have had chronic constipation.

Can I send out a word of warning to the people with chronic constipation, despite laxatives, dietary changes etc? Because of my chroic constipation, I have had two internal bowel prolapses - the last one repaired 4 weeks ago. They are no fun. If you really can't sort your cosntipation out and are straining badly, it might be worth asking your GP/continence advisor about a Peristeen Irrigation Unit. It's not the nicest thing to have to do, but it is one way of emptying your bowel regularly, without encouraging rectal/bowel prolpases.

Kathyx

susanr

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Re: How many have digestive woes ???
« Reply #21 on: April 21, 2010, 02:59:35 PM »
count me in too... GERD (I take nexium), IBS (mostly constipation), stomach pain and nausea. It comes and goes, but has been so bad I have been to the ER a few times, hospitalized once, lots of tests, no real answers except it must be from Sjogrens.

Justdave

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Re: How many have digestive woes ???
« Reply #22 on: April 21, 2010, 05:37:37 PM »

Can anyone tell me if GI issues are a listed symptom of SJogrins?


I had the stomach test scopy thing a ma jig, and I was told I had Gastritis

Is that related to vasculitis?  I had that too.. in a skin test. I have no idea.

Anywho...

When they put me on the meds, lo and behond the gi stuff started clearing up.

It was real bad at one time,  it has improved big time with the immune suppresants..

torable actually. Yeah on occasion I get some issues.. but overal Im good.

JannaLee

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Re: How many have digestive woes ???
« Reply #23 on: April 22, 2010, 06:55:10 AM »
Dave,

I think GI issues are related and listed as such.

Janna

Prairie Gal

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Re: How many have digestive woes ???
« Reply #24 on: April 22, 2010, 01:21:44 PM »
Dave, digestive problems are listed as part of the SjS picture; go to the Sjogrens Syndrome Foundation web site and you'll see a sketch of a human body with labels showing the various problems we can have.

Vasculitis is an inflammation of the blood vessels; I don't think it's related to gastritis.

Prairie gal

Bernice

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Re: How many have digestive woes ???
« Reply #25 on: April 22, 2010, 04:19:32 PM »
Count me in here too!

Nans

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Re: How many have digestive woes ???
« Reply #26 on: April 22, 2010, 07:16:25 PM »
I belong to the FUD club - Frequent Urgent Diarrhea.  What a pain.

Just Jeff

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Re: How many have digestive woes ???
« Reply #27 on: April 23, 2010, 06:59:54 AM »
All right....lurked long enough.

Yes, digestive problems can be a really big problem with SjS.

My problems actually started in my gut and worked their way up to my eyes/nose, etc....

I started having constant diarrhea, and after a few weeks of it not going away, went to the dr.   They put me on antibiotics and sent me home.  Didn't work.  Went back to the dr, and back to the dr, and back to the dr.   Even went to the ER due to my heart starting to skip beats from malnutrition.

All the while, it became more and more frequent.   At first it was once or twice a day.   By the end, I was going about 30 times a day.   Couldn't leave the house.

Went to a gastro, who immediately thought it was Crohn's.   After a colonoscopy and endoscope, he told me I had GERD, but that wouldn't cause the upset stomach, so he referred me to a shrink, even though I told him about heart skipping beats, sore throat, and hands and feet turning blue.   But did diagnose me with collagenous colits.   My bowels were filling with white blood cells.   Put me on 12 weeks of maximum doses of Pepto Bismol.   It worked a little, but as soon as I stopped, it came back, not that it left entirely, but at least I could function.

Changed gastros and immediately this one tells me it's probably SjS.   Orders a CAT scan and finds my lymphnodes in my colon were swollen almost to the point of lymphoma.   He says that it is not my colon causing the lymphnodes, but the other way around and tells me to see a rheumy.

Go to the rheumy, and she does blood work.   Seronegative on RA, ANA and SSA/SSB.   Continues to monitor me for four months.   When my eyes started burning out of my head, I go to optomistrist, who does a Shirmer test and finds I have 3mm of tear production.   Go back to rheumy and she tells me that that is what she was waiting for.

Now on methotrexate, which is working, but I definately don't like it.....yet.   Waiting to build tolerance.   But at least I have a name to the monster and it is allowing me to function like a normal human being again.

Just Jeff

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Re: How many have digestive woes ???
« Reply #28 on: April 23, 2010, 07:14:59 AM »
Oh.......forgot to mention that it took over a year to get the diarreah under control, so one year of going 30 times a day.   Needless to say, I lost 45 pounds.

dry2010

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Re: How many have digestive woes ???
« Reply #29 on: April 23, 2010, 07:18:46 AM »
I dont get diahrea very little constipation. I wake up with a stomach ache then I have to hurry to the bathroom because it has to come out not water just soft. I was told I have silent reflux but all my pain is on the left by my belly buttton which was told IBS. I have a appt May 7th with the rhuemy 1st one GP found two markers in my blood panel positive for SJS. I am sure the Rhuemy will probably do his own test. I also got handed pills for anxiety because all my other docs just wrote me off as a hypochondriac.

I hope the digestive junk is SJS and that something I can take will help me get straightened out.
Diagnosed SJS March 2010, Gerd, Plaquenil & Generic Evoxac,suspected Chronic Inflammatory Response Syndrome,Wellbutrin, Hypothyroid and menopause.