... my question has anyone had a complete total pancreatectomy? if so what can i expect during and after ( quality of life life expectancy etc)
Hi kelleysandy! I used to have horrible pain in my abdomen and back from chronic pancreatitis until I developed the following regimen. I also lost 40 pounds due to malnutrition, because I was avoiding the pain of eating food. Please try this for yourself to see if it might be helpful to you as well. I am now pain-free and weigh exactly what I should!
Here is the exact regimen I use:
1) Take Lyrica at its highest allowed dose morning and night to battle the nerve pain. Pancreatic pain is expressed through the nervous system.
2) Oxidation is the driver for the pain from the disease. Take the following antioxidants to combat the oxidation process:
L-Glutathionine with CoQ10 (Swanson), Alpha Lipoic Acid, Grapeseed Extract, Selenium, and Ginger. I take maximum RDA of each twice per day.
3) Take a pancrelipase (pancreatic enzymes) called Viokace. Viokace is the only pancrelipase brand that is NOT enteric coated. I experienced far better results when I switched from Creon (enteric coated) to Viokace (NOT enteric coated). Viokace releases the enzymes earlier in the digestive process, thus performing better with digesting your food. This is superior for resting the pancreas and avoiding malnutrition. This also means you can maintain a healthy weight. I gained 40 much needed pounds when I switched from Creon to Viokace. You will need to take a proton pump inhibitor (omeprazole). You take the omeprazole to keep your stomach acid from destroying the pancreatic enzymes from the Viokace. These enzymes are vulnerable to stomach acid, because the medication is not enteric coated.
4) I drink 7 blended drinks every day (every 2 hours). The blended drinks are made in the following manner: You need an expensive blender. You need many "Ensure High Protein" bottles. You need a whole grain cereal of your choice that is very low in sugar and fat. Ensure High Protein is very low in sugar and fat. The calories come from protein. The cereal is for the purpose of adding whole grains and calories to your diet. Put 8-14 ice cubes in the blender depending on the size of the ice cubes. Next, put 1 cup of low fat and low sugar whole grain cereal on top of the ice in the blender. Next, put 1/2 cup of water in the blender. Finally, put 1 container of "Ensure High Protein" spread evenly in the blender. Blend the contents for 65 seconds on the highest level. Again, it must be an expensive blender. I use a Vitamix blender. Pour the finished contents into a very large cup. Enjoy! It is easy to take these drinks with you in 24 ounce thermoses. Each drink exactly fits in a 24 ounce container.
4) The only additional supplement you need is potassium, because the drinks do not contain any potassium. Take the RDA for potassium each day.
5) Avoid any activities that jolt your body. For example, I have discovered that I can not ride in a boat that is bouncing on the waves. Your pancreas does not like to be jolted.
I welcome any questions from you, kelleysandy, or anyone else! By the way, you would have about a 75% chance of developing diabetes within a year following a total pancreatectomy.
Good Morning. I hope you have a good day today!
I have a couple of questions for you. Is a total pancreatectomy being suggested to you by your physician, or your treatment team? What is the cause of your pancreatitis? What are your current treatment(s) and lifestyle changes you've made (diet, alcohol intake, etc.)? Are other treatments, including other surgeries, being offered to you?
I can only share my own experiences. After a solid year of pain that began suddenly one morning when I woke up unbelievably nauseas. I had many tests: multiple ERCP, EUS, CT, MRI. The last ERCP attempt to enter the pancreatic duct failed like the ones prior. The duct was blocked by scarring. So, the enzymes produced by the pancreas had nowhere to go, and they just stayed in the pancreas, damaging it. The damage was not reversible but the damaged duct could be removed along with the head of the pancreas. It was an elective surgery, and would definitely rule out pancreatic cancer. I had it done and now use Creon which works great for me. I take it about 1/3 of the way through the meal. I also take famotidine. I took a PPI for years but stopped last year, a decision that was mine and my gastroenterologist's. Long term use greatly increases the incidence of stomach polyps and stomach cancer. The surgery carried a risk of developing diabetes, but that didn't happen. With a complete pancreas removal, diabetes would occur. So, that is my story. My life has barely changed and is 98% pain free. I consider myself fortunate.
I hope to hear back from you.
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