Chronic Pancreatits Over 20 Yrs

I 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.
vtjarks vtjarks
36-40, F
3 Responses Feb 5, 2013

Hi, I had a whipple surgery 2 years ago for a tumor in the head of my pancreas, 1 week after my 6 week check up with my surgeon I developed the worst abdominal pain of my life. Went to my surgeons office next morning and was diagnosed with Acute Pancreatitis, Lipase was 755, my Dr. wanted to give it time to see if the inflamation went down on its own by doing a liquid diet and taking enzymes. He did not want to do an ERCP due to the fact that I had just had such a major surgery. Well 10 weeks went by and no improvement they did a CT scan to find out my duct was closed, so they did an ERCP to try to put a stent in and was unsuccesful, it was blocked by scar tissue. So 3 days later back in the OR to have another piece of my pancreas cut off and to open the duct. I had pain and nausea relief for only 1 month and then it started all over again but all my tests came back normal and this went on test after test blood, mri's, ct scans, EUS's and ERCP's. Then 4 months ago I had a Severe attack and my Lipase was 1458 and Amylace 167, finally my surgeon believed me because he kept saying that there was nothing wrong with my pancreas. He sent me to have another ERCP and the Dr. could not find the opening to my pacreatic duct. So he then sent me to a Dr. Martin Freeman in Minneapolis, I live in Florida now for the past year and a half I am originally from New York and my surgeon is from NY Columbia Presbyterian Hospital he is the Head of the Pancreatic division there. My husband and I went up there on 2/12/13 and Dr. Freeman was able to get 2 stents into my pancreas the procedure took 3 hours he said it wad very complicated and that I Definately have Chronic Pancreatitis, my pancreas had 5 out of the 9 signs of it. It was not the diagnosis I wanted but at least I finally found out the reason for all my pain, nausea and weight loss. He said it is only a 50/50 shot of helping with my pain. Three days after the ERCP I started with the Most severe pain again put in a phone call and he said that it would get worse before it got better. Today the pain is still there but not as intense. I have to go back in March to have the stents replaced because they put hard stents in with anchors that can not stay in to long but hopefully they will stretch the duct open they plan to replace them with soft stents without anchors. He told me that this was the only thing they could do the only other thing to do is to have the rest of my pancreas removed. They gave me paperwork on the the surgery that makes the Whipple surgery look like a walk in the park, if you are not familiar with the whipple surgery it is when they remove the head of the pancreas, gallbladder, duodenum (1st section of intestines) and basically reroute your whole digestive system. Recovery was and still is HELL, there are so many side effects to this surgery. So I would like to avoid the surgery at all costs, I would have a feeding tube in my instestines for 4 months a Gtube that goes into my stomach and drains out all of the bile for about 3 months and I would instantly become Diabetic they do try to graph your liver to have it start to generate insulin and that could take up to 1 year to see if it even works and there is only a 50/50 shot that it takes but even if it does I would be insulin dependant and if it does not work I would be a Brittle Diabetic which alot of people die from. He also said that I definately will become diabetic with the chronic pancreatitis because I have so little left of my pancreas and if this happens before I ever decide to do that surgery that it will be to late, that I would no longer be a candidate for the surgery. So I am now trying to deal with this diagnosis and whats to come. I have also had 2 major back surgeries in my early thirty's and I was uable to have children due to infertility problems so I did IVF's I did get pregnant and had a misscarage. When I was going to try again I ended up with my second back surgery and they told me that if I ever did get pregnant that a full term pregnancy could put me in a Wheel Chair and it was not advised evan my infertility dr. said he could not help me anymore because it was to risky! My Heart Ache over not having children is worse than the physical pain because that was all I Ever Wanted was to BE A MOM!!! So now I am searching for information to try to slow down the burnout of my pancreas, reading alot about vitamins, herbs and what to eat and not to eat, which I am already on a low fat strick diet from the whipple surgery because there is soo much that you can not eat after that surgery. Have you ever had an ERCP to try to put a stent in? Maybe we can help each other out with things we read and what our doctors tell us. May God Bless You and Help You

I had several stents in before the whipple,seemed to help for a few months. After my first whipple surgery they had to put a metal stent in the hepatic duct because of scar tissue closing it causing jaundice, had that stent removed when they had to reopen me because of leaking. The ERCP's are a breeze compared to the surgeries, if anything can be done that way, it is easier on you. I'm waiting on an answer to the pain returning after 15 months with minor or little pain---praying an ERCP can remedy the situation for a while. We just need to remember we are alive and kicking for a purpose.

Reading your story just breaks my heart. My experiences with it so far are no where near as severe as yours. It's never a bad idea to get affairs in order but don't let that be you throwing in the towel. What kind of diet are you able to have? I'm sure you don't drink or smoke. I'm gonna out you in my thoughts and prayers. Keep fighting.

I shouldn't complain about what I am going through. My heart goes out to you. Keep your faith. Fight for those children. I am expecting my first grandchild this summer and I have intentions of watching her/him grow up. Please don't lose hope.