crissya - i wrote you a long response and the website went down and i lost it all! UGH! I'm not feeling great right now so i'm not going to retype for now...I'll try it again a bit later. Thank you for your response...it means the world to me. =)
And no the doctor hasn't given me a cause yet...which is frustrating. Seems however 30% of people never know what causes their CP. =(
Hugs!

idamay - I'm shocked the health care system would put your in a position of taking care of patients while you were so sick. That's a lawsuit waiting to happen. Gheez! Sorry. :(
Thanks for the tips...I'll ask tomorrow when i visit my doctor again.
Hugs!

Transari,

Can I ask you how they diagnosed that your Pancreatitis was chronic and not acute?

I have been going through this for two years now and I think that that is what they are going to end up telling me.

What tests did you have to determine C? How many attacks did you have before they considered it C?

This is a very confusing disease and I honestly don't think that many doctors understand it well enough to treat it well.

I have had so many CT's, and EUS, and MRCP but I have not had an ERCP because I am afraid of it.

They removed my gallbladder two years ago "just in case" it was the cause... which apparently it wasn't.

So, now I am trying to be conservative going forward with more tests. I don't want risky tests only to conclude that I have Chronic and not Acute and that there is nothing they can do.

Also, my internist two days ago asked me if my G.I. doc had suggesed taking enzymes.... he has not. I don't know why.

tropical - CP diagnosed by symptoms= (pain in upper ab which radiates into back, worse after meals, no appetite, loosing weight without trying, get some relief if i lean forward but pain is still there...it never goes away and keeps me up at night, oily foul smelling stool, pale yellow stool, food coming out completely non digested in toilet, itchy & fatigue), + 3 days of stool samples & malnutrition. Doc did an upper GI before CP diagnoses to rule out celiac, ulcers, hp bacteria etc. I'm 5'9" and now weigh 116 lbs.

I had my gallbladder removed 5 yrs ago...by a different doc than i see now (due to this pain...yet back then the pain wasn't as severe, i wasn't manourish & still had muscle mass). The doc also performed an ERCP back then...during the procedure he hit my pancreas. I ended up in the hospital with acute pancreatitis. It was so bad i would pass out from the pain. My mother was with me and she thought i had passed away during one attack when i passed out. I can't help but wonder if that ERCP pancreas "HIT" is was put the nail in my coffin so to speak to end up with CP. Over the past 5 yrs the symptoms grew worse and worse with attack more and more frequently. So I urge you not to do invasive testing unless it is absolutely necessary and make sure that when and if you do this procedure it is done by a specialist in the field of pancreatic disease.
Also talk to your GI about Enymes...The enzymes i'm taking are from Pig Pancreas (ick!!!) but they seems to be helping me. There are others out there that may work for you...just ask a lot of questions.
Good luck and keep me posted on how you are. Hugs!

Transari,

Thank you so much for your response. I have been fighting with all the doctors over the last two years over my refusing the ERCP!!!!

I finally got the last hospitalist (a week ago today) to admit that the ERCP would cure nothing and it was NOTHING more than exploritory surgery with a very high complication rate, the most serious complication is to put me right back into pancreatitis.

Techincally, although they released me, according to yesterday's enzyme levels I am still in pancreatitis, just the severe pains have gone away. My lipase is still 345 (down from 31,000... yes 31,000) and my amylase is 165.

Last week they told me that at over 31,000 UL that was the second highest lipase level that they had ever seen.

I am a very logical person, and do a lot of reading. My gut is telling me that I have C. Pancreatitis and not acute. As far as I know an ERCP can do nothing for C Pancreatitis.

I am so sorry that you have had such a rough journey. It seems that all that are on this journey have a lot to suffer through and there is a serious lack of knowledge amongst the medical community as to how to diagnose and treat this disease.

Transari,

Thank you for your kind respond. I am new to this site. This is my second day.

Warm wishes and lots of love to you.

Lynn

They can do a specialized ct scan with hormones, that will show if it is chronic! I agree, the Ercp often makes it worse and causes the CP! Best of luck to you!

Transari - I have never heard of Cholestyramine powder, what is it supposed to do??

As far as low fat, I was told to stick to less than 15 grams a day, I try to keep it less than 10. I feel like from reading these boards I can eat a larger variety than a lot of people can on my good days. I eat a lot of fruits and veggies, fat free breads and crackers. The past six months I switched to a vegetarian diet, I try not to eat more than 3 grams of fat in a meal/snack. I'm also on Creon (with you on the YUCK pig pancreas factor!!!) I have a great cookbook I just love it's called Everyday Cooking with Dr. Dean Ornish (http://www.amazon.com/Everyday-Cooking-Dr-Dean-Ornish/dp/0060928115/ref=sr_1_4?ie=UTF8&qid=1308927564&sr=8-4) almost every recipe in this book fits my diet restrictions. No oil, butter, nuts, etc. The biggest challenge with eating this way is the toll it takes on your skin, hair and nails. Mine have never been in worse shape. I use vitamin E creams and mix jojoba oil with my conditioners and lotions. I also take iron, vitamin b complex, multivitamin, evening primrose oil, and an antioxidant complex (dr. perscribed, it is supposed to help with the pain).

As far as life expectancy: with treatment you can live a long time with CP. Unfortunately there are also a lot of risks and grim statistics, I will look for the studies where I found these statistics, but they are all from research papers revolving around the Total Pancreatectomy surgery (I have been reading them as I have been researching the surgery): With NO form of treatment 30% of patients with CP will die within 5 years of diagnosis from organ failure (I assume this means alcoholics keep drinking, no enzymes leading to malnutrition, no specialized diet etc. etc.), within 10 years of diagnosis people with CP have a 30% chance of becoming diabetic and a 50% chance of having pancreatic cancer. Very scary. But, I'm only sharing this because, for me, I was more comfortable knowing what I was up against since before I knew, I had imagined much worse. Plus, it helped me realize how important it was to make sure I was seeking the best treatment, despite all the hoops the medical system makes you jump through. Keep in mind, it is a small percentage of the population who winds up with CP at all, you are already a statistical anomoly, if you don't mesh with those statistics, there is no guarantying you will fall under these ones. You still have a every reason to keep on fighting.

Good luck, hun. Hope this was a little helpful at least. We're all here & going through the same thing. I look forward to getting to know you better.

Taparapa - Cholestyamine Powder is used for:
Lowering blood cholesterol levels. It is used along with changes in diet. It is used to relieve itching caused by partial biliary obstruction. It may also be used for other conditions as determined by your doctor. (I'm still having frequent itching fits as i all them but...)
Cholestyramine Powder is a bile acid sequestrant/anion-exchange resin. It works by increasing the removal of bile acids from the body. As the body loses bile acids, it replaces them by converting cholesterol from the blood to bile acids. This causes the blood level of cholesterol to decrease.

The medicine acts as a binding agent to help prevent diarrhea which is a huge factor for me with the malnutrition. Everything I eat flushes right through me before my body has a time to digest any of the nutrients. The powder hasnt gotten rid of all of the diarrhea or the yellow stool and oil but it seems to be making the number of daily bowel movements less frequent.

I really appreciate all of the information. I am like you as far as Id rather know what Im up against so I may seek the appropriate treatment.

Good luck to you too. Im sorry we have to get to know each other through this disease but its a pleasure to meet you and I look forward to knowing you better. Hugs!