How did this happen?

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Hey everyone.   I am a 55 year old female and weighed 108.  I quit smoking 3 years ago and have always felt pretty darn healthy.  Havent been sick in quite some time.   Mid November of 2016, symptoms started.  Nausea and diarrhea.   At first I thought I was coming down with the flu but 2 weeks later I still  had diarrhea accompanied with pain and discomfort. Lost about 8 lbs.  Could not get in to see doc right away, but a month went by and now stools are yellow and floating.  Ive got a rash on my arm, shoulder and back .  I also have something going on in my mouth.  Pharmasist said could be ulcerations in my mouth. Finally seen gasterenterologist and had blood work and stool test done which came back positive for pancreatic insufficency.   Doc put me on 25000 units 3 each meal 3 times a day.  Thats 75000 units per meal.  My 2nd appt was a month later and I was still feeling pain and little diarrhea, he raised it to 40000 units totaling 120000 units per meal.  I just had another blood test done and MRI done last week which results have not come back yet.   I do not drink and this is not in my family history.  What is going on and how serious is this?  Is it most likely I will be on this medicine for the rest of my life?  This medicine is very expensive too. 

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  • Posted

    Did they do bloodwork to check if you have a autoimmune disease?  I was diagnosed back in August with Sjogren's Auto Immune.  For quite a few years , on and off I would get these pancreatic attacks that the pain was so bad I would hit the floor and hard to breathe.  This week, the doctor confirmed I had AIP (AutoImmune Pancreatitis).  Ask your primary doc to run an auto immune blood test.  It will come back either normal or abnormal.  If it comes back abnormal, the next doctor you need to see is the Rheumatologitst to run a complete auto immune panel to show which auto immune disease and then you can take that to the gastro doctor and show them it may be from an auto immune disease.  Hope that helps and good luck.

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    • Posted

      Hey Mikki1220,  All my blood work came out negative.  Doctor says it ediopathic disease.  Do not know where it is coming from.  Im going tomorrow to see another GI doctor.  Not too sure I feel to comfortable with the one I have now.  He doesnt seem to be too informative unless I ask a question.  Not seeing a caring attitude.  I dont know. Ive asked around if anyone knows of a GI that specializes in pancreas but no one knows. Im on 40000 units x 3 a meal  and 3 x's a day.  So I started only taking 2 per meal eating 5 times a day not to exceed 2 grams a fat per meal.  Sharp pains seem to be less.  Feeling better than I did, but still not feeling comfortable leaving  home without knowing im not going to have to use the restroom. I tried veggie chips and they didnt go over very well with me.  I could eat them but gave me diarrhea.  I sprayed with Pam, sprinkled with seasoning salt and put in oven for about 30 mins.  I got receipe online but unless Im doing something wrong, wont be making them anymore.  LOL.  Im just trying to find food that doesnt make me feel bad afterwards.   Thank you for the tip. I appreciate being able to come here and get support from good people who care about others.  Thank you. 

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    • Posted

      Hey Mikki1220  Sorry its taking me so long to get back to you.  My blood work is all normal.  The only thing that came back abnormal was my stool test came back  severe pancreatic insufficiency , but my CT scan shows my pancreas Very normal.  No leisions or abnormalities.  So im off the Zenpep and now on Xifaxan.  Its an antibiotic.  Very expensive.  Just stated on it yesterday and im starting to feel better already. I had a piece of cake yesterday for the first time since Nov.  Will see.   
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  • Posted

    Hi Ada,

        I remember the days I had to take at least up to 9 Immodium's a day to stop the diarreah.  I was told it was IBS.  NOT!  Since I changed my diet, stopped the soda, upped the protein and veggies, no more diarreah.  Thank God!.  First time I had a normal bowl movement, I was rejoicing becasue I forgot what it was like to have one..LOL.  You really need to find a good doctor.  If you in NJ, I have a good one!

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    • Posted

      Can you ask your NJ doc if he /she knows anyone in Atlanta GA? So glad to hear your doing better.
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