Chronic Pancreatits Over 20 YrsI was diagnosed with CP in 1993. I have been living with flares on and off since then. I have a congenital issue in my common bile duct that was the cause of my CP. I have had many surgeries to re-open the bile duct and remove the slude. I also had may gallbladder removed in 2011, but with no relief. Currently I am going through one of my worst bouts of CP ever. I have lost almost 50 pounds in the last couple of years despite being put on TPN to keep me alive. Unfortunately, I kept going into sepsis and septic shock due to infections causes by Common Variable Immune Disorder (CVID). This is a genetic immune deficiency. Every time I have a port or picc put in to feed me I wound up with a deadly infection. At this point they feel the risk of immediate death from having lines in is too much of a risk and I can no longer receive TPN.
As of now I am just loosing so much weight from the vomiting and diarrhea, and I have having multiple attacks of pancreatitis each day. I always like to be optimistic since I have lived through so many close calls including life support, however it is starting to seem there is no solution this time around. Having surgery is extremely risky for me given the infection risks and how weak my body already is. How do we know when the time has come for our final battle with this disease? I have two small children that I really want to see grow-up, but I no longer know if this is an option. I intend on fighting this as hard as possible, but I would like to know if I should be putting my affairs in order. The disease has gone way downhill since 2010, and this month just took an even further nose dive. If anyone has any advice or experiences to hear I would welcome it.