One Year Post-TP: Reflecting on the Journey and seeking support

Posted by jeffp @jeffp, Jun 6 1:22pm

A year ago, I underwent a total pancreatectomy (TP) at the Mayo Clinic, performed by Dr. Truty. My spleen and gall bladder were also removed and they removed part of my duodenum along with some complex vascular work. It's been a tough road—more difficult than I anticipated.

Living without a pancreas comes with serious adjustments. Diabetes was one of the scariest changes at first, but over time I’ve adapted. I’m now using a continuous glucose monitor (CGM), and I’m researching insulin pump options to make day-to-day management even more seamless but it's been a constant adjustment,

Surprisingly, the harder part for me has been nutrition and weight. I’ve lost about 35–40 pounds I didn't really have to lose since the surgery and haven’t been able to gain any of it back.

I’m still relying on nightly tube feedings because I just can’t eat enough during the day. I started on Creon and now take Zenpep with meals to help with digestion, but eating still causes major discomfort. I am currently eating 1000-1500 calories orally plus the nightly tube feedings.

Every time I eat, I experience significant pain and pressure in my midsection, wrapping around to my back like a bad backache. It doesn’t seem tied to a specific food or enzyme dose—it just happens. I suspect a lot of it is gas-related, and the discomfort can last for hours. Some days I can push through it, other days I need to lie down and wait it out. I do not get this pain when tube feeding but it has other side effects.

We’re now investigating whether I’m absorbing nutrients properly. I’m doing a stool sample test to check enzyme levels and make sure I’m taking enough with each meal. I take between 4-5 with most meals. My Zenpep is Lipase 20,000.

I also recently had a breath test for bacterial overgrowth, which came back normal.

If I could get this eating-related pain under control, I think I’d be able to eat more consistently—and maybe even gain some weight back and get off of the tube feedings. That’s the goal.

If anyone has had similar post-TP experiences, especially around pain with eating or trouble gaining weight, I’d love to hear your insights or what worked for you.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

ashley2235 | @ashley2235 | Jun 7 6:39am

Hi. I am 2 years out from the same surgery. Are you taking Protonix? How are you taking the Creon? Works best for me when spread out through the meal. Also, I have found great relief taking Beano and Gas-X, as well as moving after meals (walking, stretching, etc).

jeffp | @jeffp | Jun 8 9:17am

In reply to @ashley2235 "Hi. I am 2 years out from the same surgery. Are you taking Protonix? How are..." + (show)

Thanks for the response. I am taking omeprazole daily in the AM.

I take my enzymes throughout the meal as you mentioned.

I have tried gas-x in the past with little effect. I will give bean-o a try. How do you dosage it? Do you take it before or after meals or something different?

I will try more activity after eating .

Thanks
Jeff

ashley2235 | @ashley2235 | Jun 8 9:53am

In reply to @jeffp "Thanks for the response. I am taking omeprazole daily in the AM. I take my enzymes..." + (show)

I was changed from Omeprazole to Pantoprazole by Mayo. They felt it was more effective. Perhaps consider that?

I take 1 or 2 beano if I'll be eating something that causes me gas (fiber, veggies, some fruits, etc). I take 1 at start of meal and 1 at end of meal.

montyd | @montyd | Jun 8 10:17am

I’d recommend you try some of the Kate Farms products to gain weight and nutrients. I used and still use the Standard 1.4 after my Whipple surgery. I’ve been able to pick up nearly 40 lbs and get my digestive system working properly.

denam1 | @denam1 | 6 days ago

Hi Jeff, I’m now 7 months post a TP. I’m an otherwise healthy 70YO non smoking male and because of my health I qualified by my care team to go in quickly and remove the pancreas, spleen, small intestine, gal, appendix, 5 lymph nodes, part of the liver and part of the stomach. As are you, I’m an overnight diabetic. Type 3 c to be specific. I got out of the hospital at the end of September and in early November I was put on my first round of chemo. We went three weeks with a session each week then had to call it quits because it was tearing me up. I was also trying to cope with the new diabetic food issues which was not going very well either. Poor support from the hospital on our exit after 12 days there. Late in December I was qualified by Medicare for an insulin pump. By the end of the year I was on a Medtronic unit which is so much more specific to my dietary needs than a needle could ever be. It truly helped me with eating. Anyway, had to get off the chemo for 5-6 weeks then we got back on go a two week on and one week off stint and after the second treatment we decided with the oncologist that we should go off the chemo again and focus on rebuilding my strength back up. I started PT and slowly got things back in order. I live in the Hilton Head area so it was helpful in getting out and walking around. At this point I had dropped about 35 pounds. Went from 190 down to 155. Pretty much holding the 155-158 level steadily now. Doesn’t seem to be a problem other than I need all new clothes. Started chemo again 7 weeks back and did a session every other week and stopped the again because the neuropathy in my hands and feet was so bad I couldn’t walk comfortably or feel much of anything with my fingers. I’ve had 3 ct scans and 1 pt scan since my operation and all come back clear. I too take Zenpep. Two 20,000 mg pills with breakfast lunch and dinner and one pill with my in between snacks and evening snack. Usually about 9 pills a day. Also take 1 omeprazole every morning. I have to say I’m almost in a livable groove now aside from the neuropathy and we hope that will abate over time.

Need for you to hang in there and get over the hurdles one by one. I had some slow moving bowel or stomach issues also but they only lasted two months.

matt2024 | @matt2024 | 22 hours ago

Hi @jeffp - I am about 6 years out from a TP similar to yours. It was difficult at first until I got into a routine. I use a Dexcom G6/7 CGM and a Tandem tslim x2 pump that has really helped me keep my glucose in check.

I eat breakfast, lunch, and dinner with snacks in between with a yogurt before bed to help with digestion. I take 3x36,000 Creon with each meal and 1 with snacks and that seems to help me retain weight. I am up about 20# from where I was back in 2019 so fairly happy with that.

Not sure about Zenpep but Creon has not given me any trouble like you had mentioned. Happy to help if you need more information. You will get through it - just need to dial it in a bit.

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