Pancreas and spleen removal: how is life afterwards?

I take 2 of the 36,000 with meals and 1 with snacks. I don't have bloating ,belly pain, or blurred vision.

I am having belly pain but no diarrhea, but I am in only one week, I also take Ceron I feel like someone is tighting the muscles very nervous when I start eating. You’re doing great. I have heard if not taking enough Ceron can cause diarrhea.

I also had these removed. Creon was necessary for about 2 months. I journaled my food as I was coming out of the post surgery diet.
I found that fat content and flour played havoc with my system. I no longer take any creon and instead am careful with the quantity of food, it’s content, and how often I eat (more small meals not 3/day. It’s really not that hard! I now think of food as fuel and eat smaller quantities slower. Actually enjoy food even more now😊

Creon played havoc with me. I was told to take 36000 units two tablets per meal and one with snack. Then I have constipation. Cut down to one per meal. Then suffered alternate loose stools and constipation. I also suffered bloating, belly pain and blurred vision (sensitive to light). I wonder how others deal with their Creon side effects?

Hello crickard70!
Are you the one who had a total pancreatectomy around Nov. 21? I was totally praying for you and a good recovery. If you are on this website, I assume you are doing decently with the exception of the runs? I had a distal pancreatectomy last year and then took Creon 3x (36k units) per day (2 for each meal) for about 5-7 months post surgery. I've heard from others that you might need to add more if you continue to have digestive issues. If I ever failed to take my Creon, then yes I did have diarrhea. 1 week post surgery seems a little too quick to draw any conclusions just focused on Creon, (could still be abdominal upset following surgery?) Early this year when I got kicked into a new phase of insurance status for medications, and when I could no longer afford paying $500 copays for Creon, I took papaya enzymes which worked well for me. Abbvie did eventually approve my application for free Creon which I keep on hand in case I find myself needing it again (Thanksgiving meal proved I need to take it when I plan on eating a large meal); but at this time I don't take anything and have no issues of diarrhea or not digesting my food adequately. Wish you well and keep the faith.

When you mention the pancreas removed is it a section the whole Pancreas?

It was the whole pancreas. My tumor was deemed non resectable locally advanced by my local surgical oncologist. But Dr Truty does surgeries others won't. My tumor had a lot of vascular involvement.

Y es the whole pancreas and spleen, still in hospital so will be different when I get home learning diabetes. I just started Whole Foods yesterday, have to eat really small portions, I will keep you posted.

I am 4 weeks from my pancreas and spleen removed. It was brutal. But dealing with diabetes is another problem. My biggest issue is stomachaches from the Ceron I take 18, 000 to 24,000 per meal. I am eating VERY small portions like 2 tablespoons of tuna on a pita. They took part of stomach so so small can’t eat much. I am going to try and sprinkle the Ceron on food. Any suggestions for another enzyme

@crickard70, see these related discussions:
- What are other survivors doing about pancreatic enzymes replacement?
https://connect.mayoclinic.org/discussion/pancreatic-enzyme-replacement/
- How to deal with stomach problems
https://connect.mayoclinic.org/discussion/how-to-deal-with-stomach-problems/
- Struggling to eat with pancreatic cancer: How do you manage?
https://connect.mayoclinic.org/discussion/eating-with-pancreatic-cancer/