I recently tested positive for the CDH1 gene mutation and have been told I will need a total gastrectomy. I’m concerned about how the surgery will affect my ability to lift heavy weights down the road. I know I will need a certain amount of time for recovery, but I don’t know that looks like. Also, I’m concerned about how to eat for gains without a stomach. Any experience or resources are tremendously appreciated.
Hi there,
I can’t say I have experience with many folks in this situation, to be honest. And the closest “analogous” situation I do have experience with are things like gastric bypass-type procedures, where post-procedural weight gain is hardly a concern. I’ll ask around.
Most of my experience in nutrition counseling with gastric surgery patients comes from gastric bypass surgeries or something similar as well. Of course these patients have undergone this type of surgery in order to lose weight, which would obviously be the opposite goal in your case.
Some general, but typical nutrition interventions would include small, frequent meals (6-8 meals/day) where you only consume foods and not beverages with those meals. Liquids/beverages should be consumed between meals at least 30-60 min after eating (so you don’t fill up on liquid, but rather maximize calories from food). Limiting fiber (<2g/serving) and making sure foods are well cooked/soft is also important, since there would be no stomach to help with the breakdown and digestion process. Focusing on high protein foods first, keeping high calorie snacks on hand (cheese, peanut butter and crackers) and “fortifying” foods you’re already eating to make them more calorically dense (think adding low volume/high cal) peanut butter (smooth), powdered milk, butter/oils/margarine, cheese, etc.
A drawback is the potential for dumping syndrome where foods pass too quickly through the digestive tract and cause some undesirable symptoms. It often happens with sweets/simple sugars (candy, soda, cookies) - though it could include other foods too; everyone tolerates things differently so it’s something you might have to do a little trial and error with.
There are lists of foods that are recommended/non recommended, but I just wanted to share some of the basics since Austin asked. Happy to answer any other questions if I can!
Thank you Austin and Vanessa. I’m happy to report that I live within a couple hours of NIH in Maryland. I’m scheduled to meet with them on Friday. They are one of the leading centers for this surgery and currently have two research studies going about CDH1 and Hereditary Diffuse Gastric Cancer. Their support team includes nutritionists experienced with TG. I’ll plan to work with them and report back. In the meantime, I’m pushing as hard as possible in the gym to get as strong as I can prior to the surgery.
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Sounds great. We’d be interested to hear about your experience. Good luck!
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