Best Place 4 Pacreatitis Cause Diagnosis
Find a Conversation
Best Place 4 Pacreatitis Cause Diagnosis
| Tue, 03-14-2006 - 11:35am |
Does anyone know of the best place to go for a diagnosis of cause of chronic severe pancreatitis?

My husband has been in the hospital five times in the past nine months with idiopathic pancreatitis. They took him off one blood pressure med thinking that was the cause, it came back. Some cowboy Gastro guy then did an ERCP and put stints in the biliary duct and pan. duct, it happened again, the next day! Then the fourth time, his Amalyze levels and Lipase levels were at there highest at over 3000, after they went down they threw up there hands and said, lets just get rid of the gallbladder and see if that does anything, so they did; it happened again, 8 days later! That was last Saturday his levels were again over 3000, the first time they were just 1000. They did another ERCP looking for a mucosal adenoma (sp) and didn't find one. They did an autoimmune test (not sure what that involved because I wasn't there) and they did a CA 19 test and we still don't know the results of that. Now I have insurance but everytime he steps foot into the hospital it's about $5,000 out of pocket, we've already accumulated bills that match what I make in a year and have no way of paying! I've read the Cleveland Clinic's website on pancreatitus and the only things that our doctors didn't do was the malabsorbtion tests which my husband sides with his doctors on "those are genetic tests and I don' t have that". Men are so stubborn!
I have stood by my theory since the beginning of this that it has something to do with the fact that he has cystic problems, skin, kidneys, thyroid and he used to smoke and that it is dietary. So I have him on digestive enzymes so that his pancreas doesn't have to work and am starting him on As, Es and Cs vitamin therapy because in this damn world of "cover your butt" medicine you have to take control of your own health!
HI,
Don't you think you and your hubby owe it to each other to really find out what is going on?
Thanks Lynn,
I must say that was a very good description of the processes!
I know all of that! I didn't look back to see if I mentioned it but if you look on Cleveland Clinic or Mayo's website on RAP or Recurrent Acute Pancreatitis they list all the tests that they do to diagnose, our doctors have done every one of them, to no avail! The only thing they didn't do was advice on how to eat to perhaps keep it from happening. I had found out from the Mayo website about the antioxidants and mentioned it to our doctors who of course aren't versed in nutrition of any sort, and they just poo pooed it. But one of his doctors is a friend of his and I think he felt guilty for blowing me off and looked up about the oxidative stress on the pancreas and told my husband to tell me he had looked it up and I was right! Oh my that was a pig I saw fly by! At any rate I did study nutrition for two years and I know for a fact that most doctors know very little about the processes that vitamins feed. Did you know that you actually need cholesterol to make all the adrenal hormones? But they will give you pills in a second if you have too much! And the highest concentration of Vitamin C in the body is in the adrenal glands.
My husband and I both looked at the websites and digested their management procedures and it looks like they'd being doing the exact same things. I almost wish we could just send someone all the stuff that's already been done, have them look at it and draw a conclusion!
Myself, I really think it is a combination of oxidative stress (he used to smoke little cigars) and the fact that he has cysts in various organs of his body so there might be some propensity to cystic activity that could be quelled with diet, ie, more water, vegetables and fiber! But he's a stubborn man and if it doesn't come from a doctor's mouth or in a pill he won't do it. I can't even get him to quit eating "Minute Rice", he prefers that over Uncle Ben's white rice, which is a little less processed than MR, he won't eat brown rice or wild rice, so you can see what I'm dealing with! So if I can't get him to do those things at least I can do is get him to swallow vitamins!
But I'm keeping open the option of going to CC or Mayo, it's just nice to know those two places have a good rep. Now I wish it was the Medical College of WI which would be closer to home!
Thanks again Lynn!