There are so many people who want an update on Ben, so I am putting the details down here in one spot. It's not the happy resolution we were looking for.
This afternoon Ben had his ERCP, as well as an Endoscopic Ultrasound, in order to take a closer look at what is going on in his pancreas. What we expected was basically a repeat of seven years ago, with the removal of some stones and the placement of a stent. At about 1:30 this afternoon Ben was taken back into surgery and we were told it should take around 45 minutes. About two hours later he was finally out of surgery.
First the good news: he did well with the surgery, and is currently resting in his hospital room. The doctor expects that by tomorrow afternoon Ben should be feeling well enough to leave the hospital and go home. Within a day or two he should feel better than he has in ages.
Now the bad news: The doctor was not able to remove the stone blocking his pancreatic duct. The stone is too large and too dense to be safely removed. Instead, the doctor placed a small stent that is going around the stone, in order to allow the pancreatic fluids to properly drain into the bowel. The combination of that stent plus an increase in the dosage of the digestive enzymes that Ben takes with his meals should make it so his pancreas functions properly.
In about 6-8 weeks Ben will need to go back for another ERCP in order to replace the current stent with a larger one. Between now and then, the existing stent should actually be rubbing against the stone and slowly wearing it down a little. The second stent will be larger, and should continue wearing against the stone.
After another 6-8 weeks Ben will need to go back for a third ERCP, at which point the doctor should be able to remove the stone through a combination of having more space to work within plus the stone being worn down a little bit. At that point he will place a third even larger stent to ensure the duct stays open and that another stone does not form.
Unfortunately, that is not the end of it. Aside from the large stone blocking the main duct, Ben has multiple other stones throughout his pancreas which cannot be removed. The very best possible outcome is that things will not get any worse, and he will spend the rest of his life taking digestive enzymes with his meals and monitoring his pancreatic function. It is very unlikely it will be that easy. More likely is that he will continue to have recurrent pancreatitis and the formation of additional stones, which will lead to additional procedures to remove them. There is no way to know how frequently that will happen. At some point we will have to make the judgement call to have his pancreas surgically removed.
If and when that becomes necessary, it needs to happen before he becomes diabetic. If he is not yet diabetic, it will be possible to remove the pancreas, grind it up and remove the eyelets (which are what produce insulin), and then inject those eyelets into the liver where they will continue to function. I don't understand how any of that works, that is what the doctor described to us as I understand it. In any case, at that point Ben will be diabetic but not in pain, and it will be manageable. If we wait too long then that process will not be possible, and Ben will just have to have the pancreas out without transplanting the eyelets. That would be bad.
So this is what Ben's future holds: at least two more surgeries in the next four months, multiple recurrences of pancreatic stones as he gets older with more and more surgeries, an eventual major invasive surgery, and inevitable diabetes.
But other than that, things are great.