I have been discharged from the hospital for about 5 days, have so far lost about 30 pounds. including 4 at home. What strategy has been successful for you to minimize weight and muscle loss? Thank you.
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
So glad you reached out to our Whipple community for answers. I too experienced 30+ pounds of weight loss post surgery. Your body has gone through a tremendous traumatic surgery and it will take time to heal and eat enough to maintain a steady weight. I remember thinking that everything, including water tasted awful! You have to do what works for you. Small amounts of food is the key. Even if it doesn’t taste good try and make yours eat a few bites! Protein is important and any protein shake can help. Again, drinking one protein drink throughout the day will give you 30 grams!
Add foods like mashed potatoes, yogurt, scrambled eggs are also easy to digest! I know you are thinking this is never going to get better but it does! Be patient with your body and healing will come! Also, there is a product called Enterade, in the orange flavor, is a product Oncologist recommended for patients struggling with eating. I hope this provided a little encouragement. Please feel free to reach out!
@gchezick, I wanted to check in with you. Did you see @elm60's helpful post. Like you, she lost 30 pounds post surgery and has some tips for you.
How are you doing today? Have you started to find foods to help regain weight? Have you considered talking with an oncology dietitian?
My Dad had the Whipple for his NET in October2021. He was doing well, although weight loss of course, then he started getting sick again. In March, he was very very sick, bilirubin backing up and he had a biliary drain put in at MD Anderson. That saved his life. He continues to have drain changes and hopefully will have them out. Putting on weight is a slow struggle also. He eats all he can. It seems this is definitely a slow process. What meds are you on, permanently? Creon? Protonix? Thank you!
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Hello @mydadhadnetpancreatictumorandwhipple and welcome to Mayo Clinic Connect. I am sorry to hear of the problems that your dad has had post-surgery. I have had three surgeries of the upper digestive tract and it is often difficult to get the right amount of nutrition and calories to help you feel at your best.
If you read the post by @elm60, she gives a lot of information about what to eat/drink in order to keep up your weight and feel better. She specifically mentioned small meals and liquid protein drinks like Enterade. Has your dad tried this product?
While I've never used Enterade, a number of people in a NETs support group that I attend have used it and speak highly of its effectiveness. As I recall you have to purchase it online, it is not available in drug stores or other markets.
You mentioned that your dad has a biliary drain. Was this needed because of scar tissue?
Hi Teresa, I did read the post by @elm60 and I had not heard of Enterade. I will look into it! He is slowly getting back to normal and does not enjoy the Boost drinks or other supplemental drinks, but maybe this will be a little different. Yes, due to scar tissue. He had an 8.5 french drain put in, then a 10 (for 5 days that was likely not done properly), then a 12. With the 12 he has been doing well. Still flusheds it twice a day. Still on Creon and Protonix but I'm wondering if those are temporary or lifelong medications.
I hope you are recovering and getting enough nutrition, 3 surgeries is alot. Hang in there!
Creon seems permanent with me. The CT scans have shown atrophic pancreas, I believe this means the cells with not grow back to make the enzymes I need for digestion. I ate by the clock after surgery, not going more than three hours and not waiting until I got hungry. I was 103 after the hospital, 110 now, 6 months later. I seem to be holding. The dietician doesn't want me to be obsessing about calories and the oncologist wants me to count calories more. I am looking for a middle way as I want to get my life back. Nut butters have been helpful 200 calories a scoop. One of the best suggestions the dietician made. She also advised about increasing my Creon. I am tired of peanut butter but cashew butter and almond butter are high in calories. They have fats that I seem to digest just fine. Macadamia nut butter caused a lot of intestinal distress. I liked walnut butter, haven't been eating lately. Nutella (hazel nuts, chocolate and sugar) also seems to be agreeable to me.
After I had Whipple surgery in 2019 the dietician suggested adding coconut to food for extra calories. She said the fat from coconut was easier digest. I add it to my Greek yogurt, I make a pudding with coconut milk, chia seeds and cocoa when I am craving something high in calories. I have recently started taking Creon again after a test showed my enzymes were too low to measure.
I have been cooking with coconut oil or olive oil. I think the coconut oil is the best. I have MCT oil and I think it would work well with many foods. I am having a hard time with keeping my weight up even though I am on enough Creon to control my symptoms of pancreatic insufficiency
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