Hi,
I am sorry to hear about your frustrations. This can be a problem with early chronic pancreatitis. It can be very difficult to diagnose and the signs do not always show up on the imaging tests. Have you ever had a pancreatic function test? This measures the amount of secretions from the pancreas. There are few centers that do this, so it may be hard to find depending on where you live. Have you ever had an ERCP? There are risks involved with this, including an acute attack of pancreatitis, but if your symptoms are bad enough it may be worth asking about. You just want to make sure that you go to a good doctor that knows what they are doing for both of these tests. Hope this helps a little!

Hello, Sara my name is Dave. I am from Cleveland, OH and have been going to the Cleveland Clinic for testing. Is the ERCP so dangerous because they go inside your pancreas? How does it differ from an EUS, is it more accurate? Also, I wonder how the pancreatic function test would differ from the 3 day fecal test as far as results. I do not mean to ask so many questions and sound contradicting, I am just ignorant with all of these procedures. I have found that reading different struggles with this disease has actaully helped me find out what may work for me. I truely believe I am in the earlier stages, my pain is pretty constant on my left upper ab, and if I stray from my diet I really hurt and my feces is terrible(its gross). I am taking Creon - Iwas taking 12000 , but now down to 6000. I've wondered if taking to high of a dose could potentionally hurt you in other ways?
Oh well, I am truely appreciative for your remarks and would love to hear any advice from sufferers.

god bless,Dave

I am so sorry for you, it is SO frustrating when you are in pain and they can't find the cause, or else in my case they really didn't believe me. From age 16-25 I was in constant pain until I finally found a doctor who diagnosed me, and by then I was in pretty bad shape. I had a Peustow procedure and was good for 25 years until the last year. As far as enzymes, I have been taking 3-6 after every meal, Lipase 4,000 U.S.P. Amylase 25,000 U.S.P. Protease 25,000 U.S.P. for 25 years, and so far no problems with them.

HI Dave,
I had four ERCP's in the past. If you find a good doctor that knows what they are doing (and I would think the Cleveland Clinic would know somebody good to send you to) then I think it is a relatively safe procedure. You just have to go to someone that is very experienced. They go down through your stomach and duodenum, and look into the main ducts of the pancreas. The pancreas can be a very sensitive organ, so sometimes people have an acute attack of pancreatitis after an ERCP. This happened to me every time and I would stay in the hospital for a few extra days until it settled down. Some people have no problems at all though. The ERCP can show any abnormalities in the main ducts (and sometimes the side ducts) of the pancreas. I have never had the pancreatic function test, but I know it does differ from the fecal test. I think it is very sensitive to what the pancreas is secreting, but again they are not done in a lot of hospitals. All of these tests differ (CT scans, EUS, MRCP, ERCP, etc.) in that they show up different areas or any problems with the pancreas. I had my pancreas removed so I do take some pancreatic enzymes. My surgeon told me that if you are not taking enough you will have diarrhea/fatty stools and if you are taking too much then you will get constipated. I would watch your stools to make sure they are normal and you can also get bloodwork done to make sure you are absorbing all of the nutrients and vitamins your body needs. I have been through alot and of course can only share my own experiences......but am always open to talking!!
Sara

Hi Violet,
Where did you get your enzymes? My GI doctor gave me some office samples of CREON. The dosage looks very strong. I'm afraid to take such a high dosage because I had taken a product that was very similar by Thorne Research called Dipan 9 (My holistic doctor found something comparable to the Creon but without all of the strange chemicals in it). It burned so much in my abdomen all night! It was not time release though!
The Creon prescription my GI doctor gave me has 24,000 Lipase, 76,000 Protease and 120,000 Amylase.
Hi Dave,
I had an EUS 12/08 and it's basically Ultrasound Imaging of the Pancreas, biliary and pancreatic ducts done within the stomach with the use of the Endoscope. An ERCP is where the doctor uses the endoscope as a guide to be able to inject dye, insert stents and view the pancreas, pancreatic and common bile ducts. A dye may be injected into the ducts and a radiograph can be taken to see the shape of the ducts. I'm not sure if you can see the Pancreas with this test, but the ducts are visualized. There are risks involved anytime you manipulate the ducts in any way, like getting an acute attack of Pancreatitis. An MRCP is used to see the ducts. I would ask the doctor about the accuracy of each of these tests. A radiologist would be a good person to ask!
Hope this help with understanding the difference.

In the beginning I was taking McNeil's Pancrease, because there were no generics, then I switched to generic when they became available. Last year, I read of a lot of problems associated with generics, so I started taking Pancrecarb MS-4. Now, the FDA is regulating the generics so they are more standard, so when I am out of the Pancrecarb, I will go back to generics and see if I notice any difference. I haven't with the Pancrecarb, and my insurance doesn't cover the whole cost, so I will probably go back to generic. They both require a prescription. They are enteric coated, the non enteric coated ones you should take an antacid with so the stomach doens't destroy them before they get to the intestine. Some doctors say to take an antacid with the enteric ones too, but I don't, and it's something I was told to try for my pain, but it didn't help. I don't believe, at least in my case, enzymes help with CP pain, only the digestive problems.
I like having the lowest formula, then if I just have a snack, I can only take a small amount. If I eat a big meal, I can take more.

Thanks Sara,Marj and Violet. I think that I too am going to take the lower dose of Creon multiple times before and during the meal to help more with my digestion, I have the constant oily stool and butt wiping(gross I know). I am going to ask about the ERCP and accuracy as well, I think the longer this goes on the more I am willing to take risks, with my family history I really can not risk waiting too long.

Thanks again for your comments and advice!!