Regularly, CP patients are turned away from Emergency Rooms because their serum amylase/lipase numbers are not elevated. The DINKs (Doctors In Need of Knowledge) are unaware that Amylase can return to WNL (Within Normal Limits) in as quickly as 12 hours after onset (or less in the case of Sphincter of Oddi Dysfuntion) of an acute attack. Even the slower to react serum lipase levels can return to WNL in 24-48 hours.
Basically an acute attack is a chemical burn on the inside of your pancreas. Does a burn stop hurting when the flame is removed from the skin? If you had spilled Sodium Hydroxide (NaOH - a very strong base reagent) on your skin would they pat you on the head, give you a Tylenol and snicker behind your back as they sent you home untreated? Of course not but that is exactly what they do regularly for CP patients who have an equally painful chemical irritation to their pancreas.
I suggest carrying a letter with you explaining to the ER DINK exactly what your situation is. Make sure you carry a list of all medications, your insurance information and all the contact info for your GI Doctor.
Here is what I carry. I suggest you come up with one as well
[Personal contact information] [List of Medications, Dosages & Why taken]
[Insurance information]
[GI Doctor name address and phone number]
If you have been given this letter it is because I have landed in your Emergency Room. I am not a junkie or a drug seeker. I suffer from severe Chronic Pancreatitis. I am on pain medication 24x7. All of my medications are listed above. Chronic Pancreatitis leaves me fighting without cessation the worst imaginable pain. If I am here it is because the medications I have are not enough to make me tolerate the pain.
Since I suffer from Chronic Pancreatitis it is possible for me to be suffering from an Pancreatitis flare up without having extreme elevations of my pancreatic enzymes (amylase and lipase). Please contact my Gastroenterologist, [enter your GI docs name and telephone number here] if you have any questions about my condition.
[Enter your GI doctors instructions here]
For me an Chronic Pancreatitis flare up usually presents itself as uncontrolled nausea including repeated vomiting and extreme upper abdominal pain presenting itself as a high level (5-7) of constant pain with surges of breathtaking pain (8-9).
As a warning, I am a very "tough stick" when it comes to finding a vein for an IV. Pancreatitis and the huge number of IV’s I have had in my life have ruined my veins. Most of the IV’s that are put in the ER blow out within hours. If I am to be admitted I request that you put in a central line.
I carry this letter because many people with Pancreatitis are sent home without treatment from Emergency Rooms because some tests return WNL. Many Doctors, interns and med students are not knowledgeable of Acute or Chronic Pancreatitis and jump to the conclusion that the patient is seeking drugs or even just attention. I understand there are only 5-10 cases of Pancreatitis that show up each year per 100,000 population and only 2.72 cases of Chronic Pancreatitis are discovered. I know that you do not see many people with my condition and you see many more drug seekers than Pancreatitis sufferers. Please understand that my pain and other symptoms are real and I do indeed need treatment, even if it is only IV fluids and pain medication.
Thank you for your understanding.