Posted , 4 users are following.
has any one had a pancreas removed if so how are you and how has it changed your life they say I have stones in and around my pancreas they said they could inserting a pipe in the entrance of my pancreas to see if that would work thanks
0 likes, 11 replies
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michelle69417 gordie16
Posted
Hi!
I have chronic calcific pancreatitis which was caused by stones. Right now I'm managed by pain meds and digestive enzymes. My Dr. and. I have discussed the islet cell transplant which is pancreas removal. The cells are transplanted into your liver and then liver does double duty of itself and pancreas. The recovery is not easy but willing to consider. Hope this helps.
gordie16 michelle69417
Posted
thank you.
tablets are working so see what happens in the future
Shortie79 gordie16
Posted
My pancreas was removed this past October. I did a total removal with my islets transferred to my liver. My pancreas specialist told me if I tried the whipple I couldn't get the islets transferred because they need the entire pancreas to digest for enzymes. My surgery was approximately 13 hours long and when I woke up I was in an extreme amount of pain (I'm allergic to a ton of pain medications). I had a catheter in my spine to administer medication and I was on ketemine. I was in the hospital for three weeks. The first week is hell, the second not too bad and the third, you want to go home, but once you're home you wish you were back in the hospital to help with pain control. They put a feeding tube in me but I was also eating regular foods. I went home with a feeding tube which lasted another three weeks. I'm a permanent diabetic but with the islets I only really use long acting insulin when I go to bed. I have to take digestive enzymes with anything I eat, if I don't I poop my pants (it's oil from fat you cannot absorb, not actual poop but same difference to me)!! They also tell you, if you don't take enzymes, you will have abdominal pain which is almost worse than pancreas pain because of the gas! What questions do you have, I can probably answer them. Honestly, I feel I'm still recovering, especially my intestines because they remove your pancreas, spleen and 5-10% of your intestines.
Shortie79
Posted
Another note, not all hospitals offer the islet transplant, I think there's 10 worldwide that do. I had mine done at UCSF.
gordie16 Shortie79
Posted
thanks for your something to think about very worried they did say they might do the wimp method just not sure I might decide to put up with it for now as I want to go back to work. just out of interest what did they say the cause was they told me heavy drinking well I never have I drink not now but in moderation in .y early years
Shortie79 gordie16
Posted
My cause was Pancreas Divisium which caused chronic pancreatitis. The divisium is where you're born with two pancreatic ducts (only happens to about 10% of the population). For me they would only transfer my own islets because they found a bigger success rate but you will end up diabetic eventually. I told them take it completely out (I didn't want anymore pancreas pain and I don't have any). They warned that if they took out some then I might still get pain. It really is all about what you can handle. Either way, it's good to get scheduled because it takes awhile before surgery actually happens.
vedawms gordie16
Edited
It's worth pointing out that only 50% of islet transplants are considered successful in terms of pain relief and diabetes control.
Given the Coronavirus situation right now, it's going to be hard to find anyone to do a surgery of any kind (although stents and drains might be possible), but you should definitely ask.
The Pancreas Foundation has a list of centers that perform islet transplant and other pancreatic surgeries:
https://pancreasfoundation.org/npf-centers-info/pancreatitis-centers/
Also, islet isn't for everyone. I had a distal (tail removal). it's not a cure, but it's enough for me.
Feel better!
gordie16 vedawms
Posted
thank you not sure what Avenue to go down more research they say I have stones in and around my pancreas. not sure what I will do at the end of they it's my choice live with it best I can then ?
vedawms gordie16
Posted
I would push for surgery. if nothing else, get on a list for whenever we dig out of this virus mess. If you can't get surgery, your only choice will be to maintain via stents and drains and ERCPs. It won't be pleasant, but hopefully you can coast a while as you currently are.
gordie16 vedawms
Posted
thanks more research,but can they remove stones some say no some say yes I will not have operation unless I have t to, my choice
vedawms gordie16
Posted
They should be able to remove stones via ERCP. However, "elective" procedures may be on hold for a while. I would ask your GI.