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Hello. Today is my 4-year anniversary of my pancreatectomy, removal of spleen and part of my stomach, along the first part of my intestine or the duodenum. It does get easier, but it took me a year of recovery to almost be back to normal in my digestion. After this surgery, I was in the hospital for 19 days. I had a feeding tube in my stomach. I was also receiving TPN or Total Parenteral Nutrition through my port during my hospital stay. I wasn't able to eat much, so this was my option for getting nutrition. I had to go home with my feeding tube and the TPN. They wanted me to eat 1200 calories a day before suspending this protocol. It was really difficult to eat because my insides were healing, and digestion hurt. I had a hard time eating. I definitely started losing a lot of weight. I didn't want to eat because it hurt every time I ate. I would recommend doing the best she can with eating, and I recommend medical marijuana which wasn't available when I was going through this. I had a friend that got some local honey that was infused with it, which definitely eased my pain, and I was able to eat more and start feeling normal. Maybe your sister would be willing to try some gummies?
I also would recommend that she makes sure she pays attention to the amount enzymes she is taking. That is a process to figure out. It's different for everyone. Now, I know how many I have to take when I eat, but I had to take the first amount recommended: 2-3 with meals. I now take 5 with meals and 7 if it is fatty food. I take 2-3 with snacks, but again it depends on when I last ate. The cramping and diarrhea are more than likely due to the fact that she is not taking enough enzymes. However, it also takes a while for the organs to heal. She should gradually start feeling better. It is a slow road it seems. On the other hand, I was grateful to be alive and get a second chance on life. Let me know if you have any other questions, I might be able to answer. It is wonderful that you are asking questions to help her through.
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Thank you for sharing your progress. I was diagnosed the first of the year and have been going through chemo and radiation. The surgeons have recommended a total pancreatectomy due to the location and involvement with arteries/veins. Although I know it's going to be a long and rougher road ahead, hearing how you have managed the last four years is very encouraging.
Thank you. Thank you again for sharing your journey. As you mentioned it is a slow healing process. My sister had so so good days and quite a few bad days. She eats a little better. Diarrhea is still a problem. She is still losing weight. One of my concern is her spirit. Her energy level is really low and her spirit is really low. I keep reminding her how lucky she is to have a second chance. That she even feel better after just two and a half months since the surgery is a miracle. The diabetes part is also difficult to handle the multiple shots throughout the day. The high glucose alarm the low glucose alarms all day all night. I can't wait for her to get the pump. All we can do is support her. Having this support group has given me a lot of strength and a lot of hope. Thank you again
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Dear @kjrita, congratulations on your 4th year anniversary. I am so happy for you. This just proves one more time that it's all possible and that you are not a statistic. You did beat your cancer. The information you gave me was extremely helpful. We are going to start working on dosing the creon. Increasing food intake as tolerated and slowly heal. I dont know why We were expecting a quick and easy recovery but I know better now. It's going to be long and painful but totally worth it. There is light at the end of this long and difficult road. I will continue to update the group and share what is working for her. Hopefully I can help someone else like you just did for me. Thanks