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cinsue - Find a compassionate doctor who will treat the Pain

I just hope no one else has to go through what I have been through and still going.  YOU ARE NOT ALONE

cinsue - Find a compassionate doctor who will treat the Pain

I searched the web to find this forum and to ask questions about my wife's pancreatitis.  To see, if others are as bad as hers and so far have responded to 3 posts and still have not asked about other "severe" chronic pancreatitis suffers.  But you seem to be one.

My wife has had chronic pancreatitis for 3 years and the last three months has had one constant severe attack.  Has been on Demerol, now Dilaudid which is much safer 3 out of the last 6 weeks with IV fluids and NPO, nothing by mouth at home on homecare.  She is usually in level 6-10 pain and, if lucky, over the last year gets to take our 11 year old daughter out once a month for 4-5 hours, use to be 2-4 times a month but has gotten so much worse.  She too feel like she is missing years that will never come again, and she is but, if she feels, at all good, our daughter gets her time.  I praise her for that!

She has what I think they call idiopathic because there is not an identifiable cause for it.  She never drank, her ducts are fine, open, etc.  Had ERCP and lots of other tests, finally a Secretion test at SHANDS Univ. Of Florida clinic and that showed it.  But symptoms showed it, once we saw a real specialist in Pancreatitis who could recognize the symptoms.

FIRST, FIRST, FIRST -  Find, most likely, a woman internalist, most men of who I am not one of this type, have the compassion of a rock.

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A related discussion,   chronic back pain was started.
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PS You're not crazy but see a psychiatrist if you have not yet, a lady one also.  

They know drugs better than any type doctor does, it seems.  My wife sees one ever 3 months for anti-depressant drugs and sedatives.  You can not take the physical pain without emotional medicine to help.  A Psychiatrist can balance these better than anyone.

The stress alone of Chronic Pancreatitis pain will "wear you down" tremendously.  It has my wife.    
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My wife is on "strong" narcotics ACTIQ and Duresgic patches, (Fentenyl) daily and IV fluids and Dilaudid very often.  The pain is tremendous, I ache for my wife.  THE PAIN IS REAL AND AS BAD AS ANY PAIN even Cancer because it can last for years and years.  You have the right to have it treated.  

My wife has been declared by the Social security dept. as totally disabled.  She has not for several years and can not now cook, clean, shop, or even sit up around the house for more than a few hours a month.  She lives in a hospital bed we got through my insurance plan, had a refrigerator with sprite, yogurt, etc in it which is about all she can eat, and has had her life taken away for years.

THE BAD NEWS IS THERE IS NO REAL TREATMEN FOR CHRONIC PANCREATITIS!  You just have to wait for some nebulas time in the future, maybe years when it burns out and stops hurting.  

The good news is that you can be treated at home on homecare IV and at least not have to go to the hospital.  Find a good IV therapy homecare company and find a doctor who will set you up whenever you have an attack.  

Have your husband or someone get you a lot of movies cheap off ebay, watch them and just take it day by day or hour by hour.

You are not alone, it is a horrible disease!  You will not get emotionally addicted to the narcotics because your pain  is real.  You will get physical dependent but when you in that kind of pain who cares!  You can be weaned off them when the pain is gone.

Hang in there!
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