Imagine hearing that based on available information you have a 70% chance of getting cancer. A cancer that has a 5 year survival rate of 20%. The recommended “treatment” is to remove a “non-essential” organ. You do some research and find that 1 in 3 people who wait are diagnosed early enough to be treated with surgery. Your brother, your hero did not get the chance to make this choice. He was not one of the 20%. What do you do? I guess it depends on what organ they want to remove. In this case it is your stomach. Something we take for granted everyday. Wait… this is a non essential organ? When you think about it, there are plenty of people who do this. The procedure is the same as having gastric bypass. In this case, instead of bypassing your stomach they remove the entire organ and connect your esophagus directly to your small intestine. Does is help you make your choice? You will spend 7-10 days in the hospital and need at least 10 weeks to recover. It is an open procedure so you will have a midline scar from sternum to belly button. Let’s consider your lifestyle after surgery. You will lose weight, 10-20% on average, maybe more. Sounds good, but remember this is not weight loss surgery. A temporary feeding tube can help slow the weight loss. You will need to eat several small meals throughout the day. This might be a challenge because your stomach makes a hormone that tells your brain you are hungry. So imagine the need to eat often but never feeling hungry. Eat slowly and chew everything well to prevent large pieces of food from getting stuck where your esophagus meets your intestine. There won’t be a sphincter muscle to help move the food. Chewing also helps with digestion. Eating this way will introduce air into your digestive tract so find yourself burping a lot. Good new is you can eat whatever you want. You will want to monitor your dietary protein to keep from losing too much muscle mass. You will need to monitor your the amount of sugar and carbohydrates in what you eat. How much is too much? Everyone is different so you will need to figure that out on your own. After a few bouts of severe diarrhea and passing out a few times from reactive hypoglycemia and you will know what your limits are. You can still drink alcohol, just be careful. Without a stomach to dilute the alcohol, it will be absorbed into your blood stream quicker and so you will become intoxicated more easily. It will be difficult to determine if you are getting enough nutrients in your diet. Assume you are malnourished and take a multi vitamin daily. You will need to take a vitamin B12 supplement as well. No stomach means your body won’t make enough intrinsic factor, which means you won’t absurd enough vitamin B12, which means you won’t make red blood cells efficiently, which means you can become anemic. Your risk factor for osteoporosis increases to 40%, so you need to take 500mg calcium supplements three times a day. You might need to sleep with a wedge pillow to prevent bile reflux at night. Your post surgery anatomy would allow the bile that normally just runs through your intestines access to your esophagus. If this happens, it burns way more than stomach acid. Aspirate even a little and it is like setting your airway on fire. Post surgery hair loss is possible, but if you are a 57 year old male, you are probably losing hair anyway. Finally, there are the unknowns. Everyone is different and no one knows how their body will respond after major surgery. Have you made your choice yet?
Two years ago, I made a decision that changed my life. There are days I regret my choice but it is not something I can take back. Those who know me, and have seen me can tell I lost weight, about 20% of my pre surgery weight. One of the unknowns is a negative body image. I never cared before. I was overweight and happy with my dad bod. I now have a low but normal BMI, but I know I look sick. My dear friends who care enough to ask if I’m okay because of how I look confirm it. Good fitting clothes helps disguise it. I share this as one of the more personal aspects of my life. I heard on the news that the average weight gain during the pandemic was about 2 pounds a month or 24 pounds over the last year. I sit quietly and listen during those conversations because most people cannot understand how someone would want to put on weight. Early on I would eat to the point where I became nauseous. I stopped exercising to limit burning calories. Then I would step on the scale and at my highest weight I gained 3 pounds since surgery. So back to exercise and I stop eating when it becomes uncomfortable. (With the exception of last night when we celebrated Conor’s 21st birthday at Fogo de Choa. I may not get hungry, but that does not mean I do not enjoy food. It was delicious and steak is a good source of protein. So I surpassed my level of comfort.) Regardless of how I look, most days I feel really good and that is all that matters.
I have adapted and my life is more routine. There is a morning ritual that includes 5000 micrograms of liquid B12 under my tongue, a probiotic, a multi vitamin and calcium supplement. I typically drink a high protein Ensure. 16g of protein because if I go over 20g I get cramps. Most days I make a 1 egg cheese omelet for some additional protein for breakfast. In between meals I eat often protein bars but regular snack foods as well. Nuts are a good source of calories and protein. Fish, chicken, ground beef are staples, easy to digest. Cheese on almost everything for the added protein and calories.
I understand my physiology enough that dumping syndrome is rare. My biggest challenge is reactive hypoglycemia. My blood sugar drops and I get weak and light headed. Occasionally I have some tremors. I lie down and a 40 minute nap lets my body reset. Recently, I have had some success with eating small amounts of simple sugar when the fatigue begins. Seemed counter intuitive at first because it was the sugar and carbohydrates that dropped my blood sugar to begin with, but 5-7g (approximately 1 cookie) seems to get my blood sugar back in 10-15 minutes. I have been lucky to only experience a few episodes of Bile reflux. Most people can relate to the pain of a burn, getting too close to a fire or touching a hot pan. Imagine that burning feeling in your throat and chest. There is nothing to do but wait it out as it clears over the next 5-10 minutes. Bile reflux seems to occur when I eat too close to bedtime. Being aware not to eat late or staying up when I do eat later has worked so far.
This sums up how things are going 2 years after having my stomach removed.
One thought on “2 Years”
Thanks for sharing such a personal story. Your strength through this difficult time is inspiring.