You could be my twin, excepting the mutations. My CF dx came after my third acute pancreatic attack didn't go away. I was 52 while I laid writhing with pain when my wife found a pancreatic center in Boston. And so we went to Boston. After discovering my pancreatic function test was a North American record for bad, the doctor suggested testing for CF. The sweat test technically confirmed CF but a proper study matrix validating my age vs concentration hadn't been completed. The genetic test in 2003 technically classifies me a carrier. That likely will soon change as I am in the process of repeating the genetic test.
I have short periods when I am NOT suffering acute pancreatitis. Oh, for those new to that word, possibly your doctor eschews obfuscation and fears losing you with polysyllabic nomenclature. Anyway, I have heard of a scant few solutions, all I have considered and rejected, except one. A year after I was diagnosed with chronic acute pancreatitis, I visited Boston again and almost bought into denervation (lysating, dissolving or cutting) of the splanchnic nerves winding down the sides of the spine. The right nerves lead to the pancreas. At that time, 2004, your pain being cut off from your brain was even odds for one year. At the one year point half the patients remain without pain. The other half, the pain has returned. That puts odds of success at 25% by my book. Denervation amongst those who perform the procedure of denervation, which is far from new, the denervation of the pancreas this way is new, and including patients of denervation are about as hotly divided as it comes. But do your own research, see a couple neuologists and if you want to go for this solution, contact me privately. Another is an old antidepressant called Elavil, the generic name a younger doctor will recognise is amitriptylene. I doubt a mechanism is known about how this works for pancreatitis, but it does. I react badly to Elavil so it is not something I can speak knowledgeably about. Pancreatitis inflames all the area nerve bundles, putting everything in pinball mode. The pancreas goes nuts causing the stomach to express excessive acid leading to acidosis, reflux or GERD. Then you small intestines spasm producing projectile diarrhea and maybe vomiting too boot. After that celiac plexus tantrum the bowels stop moving. Constipation is a CF mechansm. Normally the bowels remove about 90% of the water contained in the food ingested. CF having a transmembrane regulator defect can suck a normally pliable stool into something resembling hard clay.
Medicine has come to the rescue with regard to consipation. Meet Amitiza. It keeps the bowel from robbing all the water from your solid waste. Titrating an appropriate amount of Mirilax rounds out the consipation problem for most CFers. That is unless you have to take narcotic analgesics. I have to take a lot and other than vigorous exercise mostly shifting the torso, what else I do is recommended by one doctor specializing in pain management, and advised against by my GI doctor so you are on your own there.
Creon or other enzyme replacement medications are an issue. By now, you are at least partially pancreatic insufficient (PI) and if you live long enough, mostly to the point of total PI for all practical purposes. You are already dealing with malnutrition if nowhere else than fat soluble vitamins, A, B, D, E and K. Check your bone density and find a restoring toothpaste and mouthwash. With all the pain you have had for years, your adrenal and testosterone may be toast. Have your testosterone level checked. CFers need all they can get.
If narcotics are your solution to unavoidable chronic pancreatitis, consider Duragesic patches. Fentanyl interferes less with the liver and the sphincter of Oodi, the valve between the common bile duct and the duodenum.
Last, do you still have your gall bladder? If so, have it removed. Or not, all this is just what I think.
