Newbie Post 2

Newbie 2: How do I live with this accursed disease?
PANCREATITIS MESSAGE BOARD
Posted by Chuck on September 28, 2004 at 11:31:08:

I would love to give you good news about Chronic Pancreatitis but I can't. Today it is still an incurable progressive disease. Doctors can give you prescriptions to help give you some relief from individual symptoms. The big key to the future of CP patients are NO ALCOHOL WHATSOEVER, low fat diet, keep triglycerides down if possible, get good GI & Pain Management docs, take your enzyme supplements religiously (I mean all the time, every time, not to pray over them altough I think that would also help sometimes) and don't try to be brave and tough out your pain - take your pain meds whenever you have pain, period (if you have pain all the time DO NOT miss a dose at all). Let someone else worry about addiction. You worry about covering your pain.

Let's face it. Our quality of life is totally dependent upon our conformance to these principals and the quality of our doctors. If you have a Doctor (with a Capital "D") that has great knowledge of pancreatobiliary diseases and compassion for your condition and admit when he/she is over his/her head and will call for help when needed you will probably have a better quality of life than if you have one of the thousands of doctors (small "d") that either are ignorant, arrogant or apathetic (some can fit into all 3 categories). We refer to these people as DINKs (Doctors In Need of Knowledge).

We highly recommend keeping a food and event diary. This journal can help you find your triggers and limits. Sometimes this disease can be fickle and hurt you one day for something that was fine the week before but as a general rule what hurts us once has a tendency to hurt us again. The diary can remind you of what you did or ate before each attack. You can also keep your questions for the doctor in it. Then make sure you take your journal with you to every appointment.
Hang around here for a while. You are among friends who know exactly what you are going through. We welcome you with open arms. Feel free to ask any questions you want. You would be very surpised at some of the topics we get into. Some are funny, some are gross but we are very much like a family here so anything goes.

Chuck