Posted by mcantr @mcantr, Dec 26, 2018

I am searching for a forum or support group for people who have had a total pancreatectomy. I have a family member who had one several years ago and feel that it would be helpful if he had a way to search for the experiences of others who have had the same procedure.

Interested in more discussions like this? Go to the Digestive Health group.

@marvinjsturing he is taking approximately the same amount of Creon as you are.


I have had a total pancreatectomy. I have Lynch Syndrome with a unique mutation. My father and two siblings with Lynch have died of pancreatic cancer. I have had prostate, colon and kidney cancer. My pancreas was tipping toward cancer so it was removed to prevent colon cancer. I am now five years post that last surgery. Other than periodic sepsis which is likely due to my missing spleen, I feel remarkably good. My diabetes is well controlled and my digestion is quite good. I am screened very aggressively. I’m 58 and enjoying life with my wife as we watch our teenagers grow up. I have not been well enough to return to work due to the sepsis. I would welcome a connection with others who have had a pancreatectomy.


Again, thank all who have responded. I've tried to come up with specific questions and I'm now going to throw these out for consideration. My son is completely Creon dependent – and has issues with regulating bowel movements. 1. Does anyone have any insights as to whether or not it is possible to fine tune dosages, or in any way head off sudden bouts of diarrhea. 2. Can high blood pressure be related to the function of islet cells – has anyone developed high blood pressure several years after pancreatic surgery? 3. Does anyone here have issues with anxiety as a result of these conditions (I suspect the answer is "yes", if so, what are your thoughts on successfully managing anxiety?

We were fortunate in that when the initial diagnosis and surgery were done – he was still on our insurance. It may be that these questions can best be answered at the clinic and we will be exploring coverage now that he's on a marketplace plan.

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My husband had similar surgery in April 2020. We were told chronic diahrrea and poor weight gain would be problems and this turned out to be true. Regular use of immodium 30 minutes before meals has helped but not consistently. As a result he is considering a colostomy just to get his life (freedom from the bathroom) back.

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