Life after Pancreatectomy: How was your recovery?

Sorry to hear that you are having such a hard time. My wife is 2 1/2 years since diagnosis and has endured chemo (third time now) multiple surgeries and horrible and debilitating side efects. She also can't eat and can't gain weight. But she believes that there is a reason why she is still here and that's what keeps her going. You're still here and there must be a reason. We might never know, but keep going and maybe you'll find out. With pancan, surviving one more day can be the difference in living long enough to discover the cure.

My endocrinologist told me to take one 24000 creon pill with snacks and two with meals. I lost 30 lbs and couldn’t digest any food. My GI doc changed me to three for meals and two for snacks. That made all the difference! The ideal diet for someone who doesn’t have a pancreas is not the best for a diabetic. That said, creon is sooo expensive but worth it.
God Bless!

I should mention that I had a complete pancreatectomy so that needs to be factored in.
God Bless.

Have you checked with Abbvie Assist to see if you are eligible for Creon free. Abbvie is the company that makes Creon. My pharmacist at Mayo Rochester told me about them and I get Creon each month free. You have to be eligible, but it is worth checking into if you haven’t. I take 3-4 36,000 units of Creon with meals and 1-2 with snacks. Possible you will be eligible also.

I felt like my gut was beginning to rule my life. Weight loss, gas, bloating, frequent trips to the bathroom. Makes me afraid to go out in public. I have had an increase in Creon, 36,000 +24,000 and my gut is happier. I hope I can get a life again!

@beachdog , as @mitchdavis mentioned, AbbieVie (mfgr of CREON) has a program that most Whipple/pancreatectomy patients will qualify for. After I got it, I was down to a $5 copay every month, and now it's free.

I also need 3 of the 36000-unit capsules with most meals, and 1-2 with snacks (depending on their content).

With bigger meals, I might add a 4th capsule, and I try to spread them out near start, middle, and end of the meal to ensure coverage and mixing with food.

A friend of mine who had the Whipple before I did advised me to buy some adult diapers, which was right-on until I got the CREON regimen fine-tuned. I've also had to cut back on the fatty BBQ, some fried foods, and the heavy whipping cream in my coffee.

Diabetes adds another twist to the picture... During the 6 months of chemo before my Whipple, I regained the 30 pounds I had lost before the diagnosis. (My wife is an amazing cook!) After the Whipple (June 2022), I lost an instant 15 pounds, but have been totally stable since July 2022, including the last 3.5 months on my new chemo.

The Starbucks Zero coffee creamers (with Splenda) are pretty good, and we've found cooking with Swerve brand "Allulose" as a sweetener bakes well and tastes a little better than Splenda. Be careful though, Swerve's brown-sugar substitute uses Erythritol (derived from a sugar alcohol) instead of allulose. The erythritol hasn't given me gas or diarrhea like other sugar alcohols do, but it is linked (recently) to higher heart and blood clotting issues, so do your homework there!

According to the AbbieVie website, patients who are insured under any federal program (Medicare,etc) will not be eligible for this program . My first Rx for CREON drops me into the Medicare donut hole.
Anyone getting this price relief and on Medicare?

I am on Medicare and I get Creon from Abbvie Assist free each month. They sent me 300 pills per month and I pay nothing. Ask Abbvie to email you an application. I was approved nearly immediately for a year and then I have to reapply, but I saw an Abbvie representative at a cancer function and she said nearly everyone who has been approved and has had no financial changes, will get approved again. It is definitely worth trying.

Thanks so much. Just applied🤞

I will pray you get help also!