If you had Whipple surgery, what are you eating or not eating?

I'm now 11 months post-Whipple, which I had 8 months after my first PC diagnosis. I found out I was newly diabetic at the same time I found out about the cancer, and have required insulin ever since.

FWIW, I learned the existence of "steatorrhea" and its difference from diarrhea after the surgery. Steatorrhea is specifically the oily, floating, foul-smelling, orange-colored stool that comes from undigested fats.

I had always eaten a lot of Atkins bars and other "sugar-free" snacks, but with the diabetes "side effect," I started eating even more. Unfortunately, most of them use variations of sugar alcohol as a sweetener, which made my diarrhea/steatorrhea worse, so those are mostly out of my diet now. Real sugar can also generate a lot of gas in the gut when it decomposes, but that's a price I'll sometimes pay willingly when comfort food is needed.

Coffee creamer (heavy whipping cream) was the next to go. I found the Starbucks Zero creamers tolerable. Ice cream and real butter are now only consumed in moderation.

I still eat a ton of meat; the calories and protein seem to help me deal well with chemo. But I'm now up to three 36000-unit Creon capsules (108,000 units) with most meals. Timing is sometimes key. One capsule before the meal, one in the middle, and one at the end seems to be a workable formula for me. It helps to stick with leaner meats, and go easy on any oils when you sautee. Fried stuff (fried chicken, especially Buffalo wings with a butter-based sauce, can be a disaster.)

A colleague who had the Whipple a few years before I did gave me two words of advice: "adult diapers." I laughed, but confess they got some use the first 6 weeks after my surgery. If nothing else, for a little peace when trying to sleep through the night.

Regarding gas: I think the tradeoff is gas with too much enzyme, diarrhea/steatorrhea with too little enzyme. I have to say I'm happy to have gas, when the alternative would be poop!

The Tums anti-gas chewables work OK for me. I've read of other folks having good luck with Gas-X. I rarely need the Immodium AD anymore, but take it proactively before a big event or a chemo session.

Everyone is indeed different, but 8 months post-op, I imagine your digestive tract itself is all healed up, and it's just one or two trigger foods (or classes of foods) causing your problem.

Thanks so much! This is all super helpful! Yes big fan of the depends at night lol. My issue is the every morning dumping sometimes in the night if I eat too late in the evening. Had not heard of the steatorrhea before. I will work on the sugar and extra fats makes total sense. Has your weight changed at all? I am worried about gaining weight back. It’s been really hard.

@nvan22 , you're very welcome. I was lucky with the weight. I had actually been dieting and working out like crazy before discovering the cancer. I actually lost 30 pounds before the diagnosis; was happy with the first 20, but the next 10 started looking suspicious and came along with the initial jaundice.

My wife is a wonderful cook and a wonderful person. My docs told me to gain all the weight I could, and in the 6+ months between diagnosis and Whipple, I regained all 30 pounds. 🙁

After the Whipple, I lost about 15 pounds in a month, but have been totally stable weight-wise for 11 months, pretty much at the weight I want to be. I'm buying toilet paper in bulk now, but it's a small price to pay. Career-change options are limited now because of the bathroom frequency, but the ability to work from home really helps with that. Just remember to mute your phone during meetings!

Lol yes I was a teacher not able to do that anymore.
I started at 120 ish and am down to 100 after the whipple. I eat like a horse but nothing sticks! I was always healthy a bit if a runner and an equestrian I jump fences and well the first to go was all my muscle 🙁 I am able to eat all the foods I never ate before and just can’t seem to get beyond 100-101 pounds since I am only 5’3 and half it could be worse I guess. Yes I wonder if people think I am a meth addict or something lol. I guess that’s not funny really . Thanks again!

@nvan22 , Have you been tested for diabetes since you were diagnosed or had your Whipple? Sometimes that can accompany the unexplained weight loss or difficulty gaining/maintaining. It's common when half your pancreas decides to take a permanent vacation.

Regarding the steatorrhea: When I was asking my onco PA about absorbing nutrients, she said a gastroenterologist could analyze stool to see what's going on, but when it's the orange greasy stuff, enzymes (or more enzymes) are usually the first step. You're about 2/3 of my body weight, but even since you doubled your dose, you're only taking about 1/4 the amount of Creon I take. Your meals are probably also a bit smaller than mine, but it sounds like you still have a little room to increase your dose, with a possible increase in gas but maybe better calorie & nutrient absorption. (Disclaimer as always: I am not a doctor!)

I am not diabetic just had blood tests last week at Mayo that part is fine. It’s going much better this week. Watching the high fat content and keeping meals small and more frequent. I will ask about getting stool tested that’s a great idea. I eat so much I guess I just need to focus on higher protein foods and bigger meals.

Post Whipple diet is low fat, no fried foods and no sugar. I’ve also had trouble fully digesting lettuce? I am 10 weeks post Whipple. I was told to up my creon to 4 capsules per meal. I’ve seen my weight drop too. Be careful eating too much at one sitting or drinking lots of liquid with a meal - caused me to vomit. (This happened twice). But once was enough….. I’m still not getting enough calories - I never was a snacker between meals. Get out and exercise - I find it helps cramping and my mind. I have minimal D - definitely up your creon and discuss with your care team; journal and remove your trigger foods/drinks. I’ve read we are to watch caffeine intake too. Hope this helps some.

Things I can expect after my husband's Whipple Surgery or need .Have enzymes stocked .Depends needed I am hearing , glucose monitoring,any drains or bags immediately after surgery?Tips to prepare are requested TIA .

My surgery was 8 months ago but it’s getting much better recently. Working on gaining my weight back. Best of luck to you guys!

I have trouble with lettuce too. Also never was a snacker was very fit and jump horses so getting lots of exercise. I think for me it’s chewing slowly and thoroughly and eating those small meals every 2-3 hours. I am working on finding that right combination of creon. If I take too many I get gas bloating and feel horrible so I error on the less side and it seems to be working. The liquid thing is hard for me I drink lots of water so I don’t let myself drink for at least half hour after eating then drink small sips for the next hour to rehydrate.
You sound organized good job! I thought I could do it in my head but it really works to write it down so I know my trigger foods. I also can’t eat broccoli too much gas. Thank you so much for all of your help. It’s good to know what others are experiencing so I know what’s “normal” and what’s unique to me.