Well , here we meet at the near close of a ten year run of hellacious pain and suffering. We have been told there are no other options at this time. We have used all available treatments and received minimal relief. Our hope realistically is to reduce pain, prevent diabetes and to get some semblance of a life back. In this ongoing struggle we have tried to tell any and all what we have done, tried, or thought of to alleviate or ameliorate the pain.

My name is Celeste, my husband Jerry, suffers from a hereditary form of pancreatic disease called Sphincter of Oddi dysfunction. This is also categorized for simplicities sake, as (CP) Chronic Pancreatitis. He also suffers from severe gastroparesis, which is where his stomach and intestines are paralyzed. They cease to move of their own volition.

Pancreatitis is a disease where the pancreas destroys itself with its own digestive enzymes. A horrible unbearable pain. Imagine you start gnawing on your fingers and don't stop. Just keep chewing on yourself. That is what your pancreas is doing. Auto destruction. Internally. Treatment consists of taking pancreatic enzymes (same ones that are causing you pain) orally, to fake out your pancreas, to make it think the cells in the pancreas have already excreted their dose. Sphincter of Oddi is the release valve that allows your pancreatic enzymes to spill into the intestines. So if it wont open , they back up and eat on your pancreas. The idea is that by hopefully faking out your pancreas with oral enzymes you wont produce as much in that duct and the valve wont need to do the job it cant. (over simplified?) I am trying hard to get a clear picture to express the issue. Pancreatic insufficiency, causes all kinds of problems of its own. It wreaks havoc on your body systems and makes life unbearable. You live on pain medications , (Jerry currently is at the maximum dose allotted to him) and enzymes and a diet that is never predictable. Jerry cannot tolerate proteins. He lives on basic starches. These are things that are readily absorbed into his system with out needing digestion. ( Every time you eat food, you stimulate your pancreas to produce the enzymes that cause you pain. So you must eat enzymes with everything too. ) Jerry takes approximately 60 enzyme tablets per day. His gastroparesis is also an issue , and in order to make food pass thru his stomach and intestines, he takes 1/8 teaspoon of Erythromyacin liquid.. Yep its that antibiotic!! Well for most people that antibiotic causes horrid gut cramps. So, doctors figured out that low doses would start those cramps and help move food thru the system. It works OK. It too is not a perfect cure but it is a bearable treatment.

Now to move on, we have decided to go thru with a total pancreatectomy and Islet transplant. They will remove his entire pancreas, reduce the tissue, and filter out the islet cells. The doctors then will reinject his own islet cells into his liver, where they will be pushed by the flow of blood into the smallest of capillaries and get lodged and start functioning. They will not know they are in a liver and not still part of the pancreatic tissue. AMAZING isn't it? And being your OWN cells, this transplant doesn't need anti rejection drugs!! Now, the downer, we waited now SO many years, that we don't know if Jerry will have enough islet cells to harvest to keep him from being diabetic to some degree. He currently has excellent glucose tests and tolerance!! The doctors must harvest 300, 000 cells. Unfortunately there is no way to know how many there are until it is done. Each pancreatic attack you have, kills off pancreatic tissue. Tissue that contains those valuable islet cells, so you see the dilemma? To jump in at the first knowledge of pancreatic damage and do surgery or to wait out as long as you can. We never meant to be the latter, it just worked out that way. Later I will post the routes we have taken , seeking help and relief. Surfice it to say, 60 doctors is reasonably, 55 more than we ever planned to have to see. Luckily for us, We did meet his Internist who has stood behind us and been a real help! I don't want to make this blog a hate blog , so we wont go into the horrid abusive treatment Jerry received for a couple of years before discovering this internist! We also had a few horrid encounters afterwards as well but again we wont go there into that negativity. This blog is a blog of renewed hope and expectations!!!!! We plan on documenting Jerrys journey thru this ordeal, in hopes of saving others from taking the long road to the same destination. That valuable luggage you carry, in your pancreas, once its gone- its gone forever! No lost and found - no restitution! So I hope you find this helpful and not scary. Everyone's ordeal will be different, just as we all are different to begin with. We only hope this will give you some idea of what it all entails.