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Connection Between Chronic Pancreatitis/Idiopathic and Liver Disease

I am a 51 yr. old mother of three daughters - ages 11,14, and 17.  I work full time and 4 yrs. ago I was diagnosed with chronic pancreatitis of an idiopathic nature.  I have recurrent stenosis of my biliary ducts and severe gastroparesis.  My biliary ducts have been reopened several times in the past four years.  I am careful about what I eat, no dairy, little or no fat, and no red meat. I don't drink alcohol and have never smoked or used drugs.  I currently take the following meds:  Protonix, Cymbalta, Provigil, Vicodin, Creon, and Excedrin PM which helps me sleep because of achiness. Without the Provigil, I cannot stay awake during the day and cannot function without it. I consume very little food, but continue to increase in size in my mid-section and my cholesterol has gone from 165 to 280 in 5 months.  My liver enzymes have been elevated for approx. the same period of time and I am now very worried about what is going on. My urine and hands have a musty odor and my potassium level is often depleted -- I urinate frequently.  I am not diabetic.

In addition, I have developed severe palmar/plantar hyperkerotosis which causes my feet to hurt, and my cervical spine has developed problems which cause severe neck pain and in my occipital nerves.  Although my internist has recommended a 3 mile a day walk or riding a bike, in hopes of lowering my cholesterol, the thought of exercising make me feel ill because my bones hurt so badly.  I have episodic falling where I fall for no reason -- my legs simply collapse under me.

Your thoughts on possible causes would be appreciated.  I have started on a combination of the 20/30 diet and Weight Watchers in an attempt to lose the weight -- but I know that I have been eating under 1200 calories a day since I became sick 4 years ago.
Please help.
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Avatar universal
A related discussion, fatty liver and chronic pancreatitis was started.
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Avatar universal
A related discussion, cirhosis of the liver, pancreatitis,alcohol stages was started.
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I wasn't going to comment on this but I just have too.
People who have had pain and are experiencing pain in the Liver area, especially Hep C patients are telling the truth about having pain.  I contracted Hep C when I was 20 years old, I am now 54.  I did not feel pain until I went through the Interferon/Ribavarin treatment for 9 months, after the treatment I started feeling pain and I have had the pain for 10 years with no stopage of that pain, as a matter a fact, just recently after another CT Scan was done, the pain increased somewhat.  I believe when the Liver is healing itself, there can be pain, I know there is pain when the Liver is inflamed, I had that pain when the Hep C load levels were high, you will feel a hot burning aching type pain.  I have also experienced the worse pain of my life, right to the point where I could not move more than 1 inch in either direction until the pain subsided, it is my believe at that moment, my Liver was failing.  Any Gastroenterologist that tells you there is no pain, is full of it, unless you have been through Hep C, you do not know what your talking about.  To back me up, talk to a world renoun specialist in this field of Hep C, her name is Teresa Wright at the UCSF medical center in San Francisco.  She treated me for years and she also told me that people with Hep C can indeed have pain while others don't feel pain.  
To help you people who experience the pain, I can tell you what I did for years to help with the pain and also to detox the Liver so you keep Cancer from getting in that area, at least so far it has worked for me.
First:  Take 1000 to 2000 mg of milk thistle a day. Take 2/ 420 mg softgelsof Phosphatidylcholine in the morning and two hours before you take tylenol of any kind and 2/ 420 mg softgels in the evening, this helps make the Liver feel better.  Take 2 Liver Essentials (from Swanson Vitamins), others make this also, 1 capsule in the morning and 1 capsule in the evening.  Take 2 Liverite (walgreens or any grocery store will have it) in the morning and 2 in the evening (evening is optional unless you eat a lot of junk food and fat)  This is used to detox the Liver every day (don't forget this).  And in closing, any gastroenterologist that tells you you have no pain, walk right out and find a doctor who knows Hep C, always ask them if they specialize in Hep C, If not, go somewhere else.
I hope this helps all of you who experience pain as I have done for 10 years.  Good luck!
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Avatar universal
One explaination is that although the liver itself does not have pain receptors ( which is what causes doctors to tell us our pain isn't real) the capsule surrounding the liver DOES indeed have pain receptors. The pain you experienced when your liver was inflammed is likely caused by the pressure the inflammation puts on the capsule around the liver.

I too have been told by expert liver docs that healing or the healing process ALSO can cause pain similar to inflammation pain because the capsule also causes pain as it shrinks as it heals. The change is what hurts be it from swelling or shrinking in size.

Some doctors of lesser experience throw out this idea and claim that pain simply isn't from your liver which in turn just hurts the patient more. They know damn well the pain is there, it can be a sharp, searing pain that is quite unsettling to the patient.

Also eating fatty foods, drinking alcohol or eating sugars and some medications can cause your liver to hurt.
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Avatar universal
There are several people I know who have had the TP/ICT surgery who are older than I and they have done excellently! In my understanding, if you were to go ahead with the Whipple and not the  TP/ICT, then if the whipple didn't help you, you wouldn't have any other options b/c you wouldn't have enough islet cells left to transplant into your liver.  (b/c with the whipple a large portion of your pancreas is removed, thus leaving you with a greatly reduced number of the islets.)
There is a GREAT website for support for people with CP or family members.  
http://www.eboards4all.com/692933/index.html
Try that! It has helped me SOOOOO MUCH!!!
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Avatar universal
Thanks for the information on the web site.  I really appreciate it.  Have a great day\1
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Avatar universal
Actually I have.  I have had 15 ERCPs in the past four and half years on my pancreas and biliary ducts.  I was told after the ERCP that I had two years ago that the next time they would have to perform the Whipple procedure.  It is my understanding that it is a very difficult procedure.  When I became critically ill with a bad attack this past November, they decided to do another ERCP.  You are young and I sure will bounce back from this surgery than I would.  The only way I will consider this surgery is if it is my only option.  Good luck to you and your upcoming procedure.
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Avatar universal
Hi I just had to respond to  your post.  I am a 27 y/o female who also has chronic pancreatitis, and liver problems.  I am currently waiting on my surgery date of June 8th.  I am having the total pancreatectomy and islet cell transplant in Minnesota.  Have you researched this surgery? The docs have not given me much hope of improvement of pain or nausea and other problems without this surgery.  
I also have the increase in weight that is not the usual case with a chronic pancreatitis patient.  Right now I am unable to eat anything and am on TPN at home via a PICC Line in my arm.  Hopefully all of this will be a thing of the past after I recover from this surgery.  
I hope you find some relief soon!!
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233190 tn?1278549801
MEDICAL PROFESSIONAL
Difficult to say without examination.  

Further evaluation of the elevated liver enzymes can be done with imaging, an ultrasound or an MRCP to evaluate the biliary ducts.  I suspect that many of these tests have already been done.  If the enzymes are persistently elevated or rising, a liver biopsy can be done for a more definitive diagnosis.  

The increased urination can be due to infection and a urine sample should be done.  Metabolic diseases like diabetes (which you said has been ruled out), thyroid disorders or diabetes insipidus (not the same as diabetes mellitus) can be considered.  The latter disease can be evaluated with a water restriction test.  

As for the cholesterol, I agree with the lifestyle changes.  If this is not enough to bring the cholesterol down, medications like the various statin class of drugs can be considered.

These options can be discussed with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_
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Avatar universal
My current weight is 156 lbs. and I am 5.5.
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