Stomachless Lifestyle

How do you live without a stomach? My eating guidelines.

How do you live without a stomach? People ask me this almost every time I tell them I don’t have a stomach. Frankly, I usually don’t know how to answer this question. That’s because I don’t know whether they’re asking about my new gut anatomy, whether I can eat like a normal person, or some other aspect of living without a stomach. Usually, it turns out they’re asking about the new gut anatomy or my diet. Naturally, as I explain one of those, more questions arise.

My top ten foods to eat without a stomach

Explaining how the surgeons reconstructed my gut usually boils down to me explaining that they disconnected my stomach from the esophagus and small intestine. Then, they connected the esophagus and small intestine directly to one another. That’s the simplest answer and usually the one that satisfies the audience. However, sometimes people want to know more. When that happens, I will explain more details about my reconstructed gut.

Read The Details Of Total Gastrectomy Reconstruction

Explaining that I eat like a normal person, however, usually leads to more conversation than the surgery question. Like explaining how the surgeons reconnected my gut, I have a simple answer and detailed answer. The simple answer is that I eat mostly like a normal person. However, I eat smaller meals and eat more frequently. Plus, I try to minimize added sugars. Unlike the surgery question, rarely do people stop after the simple answer.

Usually, people offer their unsolicited explanation of how I probably eat. Then, we exchange some dialogue about how I actually eat. And then we move on. It’s actually somewhat enjoyable for me to talk about it. I like answering questions and explaining how I live without a stomach.

how-do-you-live-without-a-stomach
how-do-you-live-without-a-stomach

Because answering the diet question may help others who have had or will have a total gastrectomy, here are eating guidelines to assist you from day 0 to 365. These guidelines are based on my own personal experience and on observations of others. Please note that everyone is unique. What works for me may not work for you. Simply put, this is how I live without a stomach but not how everyone lives without a stomach.

My Eating Guidelines

Days 0 through 5 of how I live without a stomach

For the first 3 or 4 days, I did not eat or drink anything. My surgeons at the University of Chicago wanted to make sure that no leaks existed in my reconstructed digestive tract. Therefore, after a few days of healing, the doctors had me do several tests to determine whether I had any leaks.

Upon confirming I was leak-free around day 4 or 5, the doctors approved me to drink clear liquids. I remember my surgeon, Dr. Roggin, excitedly racing into my room to tell me we passed the leak test. He threw open the window curtains so that the sunlight filled the room. So did his positive energy. It brings tears to my eyes just thinking about how excited he was for me.

When I took my first drink of water, I experienced a brief but sharp pain near the connection between my esophagus and jejunum. It hurt but did not last long enough to scare me. I remained on clear liquids for another day or two before the doctors cleared me for liquids generally.

On day 5, I ate a red, white, and blue bomb popsicle. It no doubt was the best popsicle experience I have ever had!

Days 6 through 21 of how I live without a stomach

Starting around day 6, the surgeons cleared me for solid food. During this period, I slowly graduated from nibbling on soft foods to full-blown snacking (mostly still on soft foods). My main goal was to gain confidence, experience, and calories.

I counted my calories each day. I started by writing down what I ate and totaling the calorie amount as I went. Then, I started using an app on my phone to track and calculate my calories. I aimed for 1800 to 2400 calories each day. Using a food scale and portioning out my meals really helped. This way, I could count calories more accurately and also avoid overeating.

how-do-you-live-without-a-stomach
how-do-you-live-without-a-stomach

I was not, however, adventurous in terms of which foods I ate. Rather, I stuck to low-sugar, calorie-dense, soft, and bland foods. I did make a few mistakes along the way because I strayed from my rules. Had I not strayed, I would have probably had zero problems.

I remember my first bite. Mashed potatoes. Immediately, within seconds, I felt more alive than I had in a week. With this new energy, I knew great things were to come. I took it slow. I was not focused on racing back to eating normal. Rather, I ate a few bites here. A few bites there. The next day, I ate a few bites of scrambled eggs and mashed potatoes. Although the servings were small, I definitely did not finish any of my meals. I did, however, gain confidence and experience eating.

My surgery was on a Friday, and I returned home the following Thursday. My experience is similar to what the 2015 guidelines predict: “resume oral intake within 3–5 days and discharge from hospital within 7–10 days.”

Upon leaving the hospital, my energy was really low. Presumably because I was healing and low on calories. Upon walking into my home, I took my first post-surgery shower, drank a small glass of whole milk, and took a nap in my bed.

From there, I developed an eating routine focused on soft and bland foods. My routine was fairly simple. I found 5-10 foods that I knew were safe and stocked my kitchen with them. Also, when I ate, I usually waited until I was done eating before drinking anything. However, I usually did drink a little something right away to help the food slide down. But I generally avoided drinking larger volumes until about 30 minutes after eating.

Here’s the list of foods I stocked my kitchen with

I liked the approach of stocking my kitchen with safe foods because I did not have to think too much about what I was going to eat. Plus, I knew these foods were easy for me to digest and not going to cause dumping syndrome. Also, I had enough variety that I could always find something that sounded good enough. Therefore, I could focus on learning about my new gut rather than being distracted by food decisions or food mistakes.

how-do-you-live-without-a-stomach
how-do-you-live-without-a-stomach

For instance, I had to learn what hunger feels like without a stomach. I also had to learn how to gauge when I had eaten enough. Without a stomach, I did not have any extra storage room for food, nor any feeling of “fullness” before it was too late. Therefore, I had to learn when to stop short of overeating.

Around 14 days after my surgery, my family and I went out to eat lunch. My fellow stomachless cousin so graciously traveled to Chicago to see how I was doing. I ordered pho soup, a vietnamese dish with lots of broth, noodles, and flavor. It was by far the most flavorful thing I had eaten in a few weeks. Because of that, I couldn’t stop eating! For the next 45 minutes, I felt like I had a brick stuck where my stomach used to be. Walking was the only thing that helped. Eventually, I was able to take a nap. Woke up feeling amazing!

Some of the themes here are low or no sugar, calorie dense, soft, and mostly bland. My food list is not an exhaustive list of safe foods. Also, some of the items on my list may not work for everyone. For instance, the foods with dairy are not good options for patients who are lactose intolerant. If you are lactose intolerant, you should be able to assemble your own list of foods that are dairy free.

Hydration was also really important to me. I became obsessed with pedialyte. Still am obsessed. For some reason, water tasted metallic to me. Also, it was not very refreshing. However, I could drink pedialyte all day. It was so refreshing. Plus, by staying hydrated, my hunger and energy levels increased. Also, I was able to help slow down weight loss by retaining more water weight.

Pedialyte is the number one drink for dehydration that pharmacists and pediatricians recommend. It has two times the amount of sodium than the typical sports drink and two times less sugar than the amount of sugar found in the typical sports drink.

how-do-you-live-without-a-stomach
how-do-you-live-without-a-stomach

Days 21 onward of how I live without a stomach

During this period, I became adventurous in terms of which foods I ate. I do, however, tend to eat softer, easy to digest foods. That’s how I like to live without a stomach.

Here’s a list of my top ten foods to eat without a stomach

Like doing anything new and adventurous, I sometimes stumbled along the way. For instance, I had a low tolerance for caffeine. The first few times I drank tea or coffee, I felt clammy, uncomfortable, and jittery. However, because I had gained confidence, experience, and had three weeks of healing, I was easily able to handle mild gut adversity. Eventually, I developed a tolerance. Now, I drink caffeine (sometimes a lot of it) without any problems.

Two other examples. Around week 8, I ate a breakfast burrito with shredded kale in it. As it traveled through my digestive tract, I felt a painful tickle. I assume it was the texture of the kale riding through but am not totally sure. It took half a day, a hot shower, and a long nap before I returned to normal. But when I did, I felt amazing. Regardless, I avoided kale for a long time (and mostly still do unless it is finely chopped or blended).

Another example is maple syrup. One morning, in a moment of overconfidence, I ate pancakes with maple syrup. Bad move. I felt clammy, uncomfortable, and felt like everything was impossible. I just wanted it to end. Three hours later, my dumping episode finally ended. I have not had maple syrup since that one time. Though I am okay with that.

how-do-you-live-without-a-stomach
how-do-you-live-without-a-stomach

Now, I eat almost anything. I do, however, focus mostly on eating low-sugar (especially added sugar), calorie-dense foods. I also continued weighing out or portioning my meals.

In case you want some additional perspective on how to eat without a stomach, here’s a great video shot by Rane Bowen. He explains how he lives without a stomach.

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cdh1gene

CDH1 mutation carrier. Thriving without a stomach since June 1, 2018. Although I do not have a medical degree, I have been researching, writing about, and orally explaining complicated medical and biotechnology issues since 2005. I excel at understanding and organizing complicated technical issues and explaining them in simple terms. I hope you benefit from my work on CDH1 mutations and total gastrectomies. Visit www.jonegrossman.com for information about patents, trademarks, and starting an online business. Visit www.yogainthewind.com for articles about yoga and healthy eating.

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