Jon contacted me a while back when he came across my website and blog. He is a CDH1 mutation carrier as well. We hit it off right away and decided to collaborate as he had just published a CDH1 website. I wrote and published a blog piece on his website, and now he has written and I am publishing this piece on mine. See, that's the beauty of the CDH1 community. We are all (for the most part) willing to work together to get the word out and help one another be more successful. Anyway, enough from me. I hope you enjoy Jon's piece below, I know I did!
The Three Things I Like Most About Not Having A Stomach
On June 1, 2018, doctors at the University of Chicago removed my stomach. Had they not removed it, I would still have a 70% chance of developing stomach cancer before the age of 80. Now, without a stomach, I have zero chance of getting stomach cancer.
The reason my chances of getting stomach cancer were so high before my surgery is because I carry a CDH1 mutation. This mutation is known to cause, among other things, hereditary diffuse gastric cancer. This type of cancer is very difficult to detect in its early stages because it is diffuse. In other words, the cancer cells do not clump together to form a tumor mass. Rather, they are spread throughout the tissue. Hence, looking for early stage cancer cells in the stomach using modern detection techniques is more akin to searching for a needle in a haystack than a golf ball in your handbag. Surveillance, therefore, is often ineffective for detecting diffuse gastric cancer in its earliest stages, before it’s too late.
Instead of surveillance, the medical community recommends that CDH1 mutation carriers have their stomachs removed. This is called a total gastrectomy. No stomach means no stomach cancer. What?! I had never heard of that until my mom was diagnosed with diffuse gastric cancer and found out that it was caused by a genetic mutation.
Unfortunately for my mom, she did not have the option to have her stomach removed. Rather, her cancer was too advanced. She cycled through several different combinations of chemotherapy. Eventually, the chemo stopped working. My mom essentially had zero options. She had to succumb to the disease.
It was roughly a year after my mom’s diagnosis when we learned she carried the mutation. Word quickly spread within our family. My aunts, uncles, cousins and siblings all started getting genetic testing to see if they carried the mutation too. During all this, we learned that CDH1 mutation carriers are recommended to have total gastrectomies. The way things played out, as they probably do for many people, before finding out that I carried a CDH1 mutation, I learned that the recommendation was to have a total gastrectomy. So, in my situation, I first found out the recommendation. Then, I found out that I carry a CDH1 mutation.
At first, I thought that total gastrectomy was way too extreme. I told myself that if I end up having the mutation, I would not have a total gastrectomy. However, after learning that the recommendation for CDH1 mutation carriers is to have a total gastrectomy, I watched my mom (also a CDH1 mutation carrier) slowly, uncomfortably, and painfully die from diffuse gastric cancer. Meanwhile, my aunt and cousin each had total gastrectomies. They were doing fairly well afterwards. The biggest difference was that my mom kept getting sicker and my aunt and cousin kept getting better.
In January 2018, my mom died from diffuse gastric cancer. In February 2018, I learned that I carry a CDH1 mutation. At this point, having a total gastrectomy was a no brainer. In my opinion, I had to have it. In June 2018, I had my stomach removed. I have zero regrets about my decision. Actually, in some ways, I feel like my life has improved.
Here are my three favorite things about not having a stomach:
1. Healthier Eating
Being stomachless has resulted in healthier eating for me. It has required me to pay closer attention to what I eat, how much I eat, and when I eat. Even if by necessity, this is one of my favorite things about not having a stomach. I generally have a better relationship with food now because I study it and how it impacts my body and mind.
Before my total gastrectomy, I was a healthy weight and ate moderately healthy. I did not, however, watch my sugar intake. Nor did I pay attention to how many calories I ate each day. Also, I ate one to three big meals each day. Basically, I ate what was convenient, tasty, and affordable. This eating style led me to consume a lot of sugar each day. It also resulted in wide swings in calorie intake per day.
After my total gastrectomy, I started paying close attention to the foods I eat. I avoid foods high in added sugars. I count the calories I eat each day to make sure I am eating roughly 2000 to 2400 calories. Furthermore, instead of eating big meals, I eat many small meals throughout the day. I basically snack my way through the day.
Once I started paying attention to my sugar intake, I realized how much sugar I had been eating before my total gastrectomy. Did you know a 12oz can of Dr. Pepper has 39g of added sugars? This is a very high amount of sugar for one day, especially from just 12 oz of liquid!
I also realized that some days I would consume 1000 calories and others 4000 plus. Those are wide deviations from the recommended 2000 calories. Those big caloric swings were likely impacting my mood. Possibly making me more sluggish, impacting my ability to focus, and otherwise impacting my daily performance.
I also realized how much more convenient and efficient it is to snack throughout the day rather than break for big meals. I can snack while doing other things, whereas breaking for a bigger meal requires much more time and can be inconvenient. Plus, when snacking, I rarely feel tired or sluggish after eating. I also rarely feel too full. Moreover, I almost always have a snack with me or know where I can get one quickly, so whenever I am hungry, I can eat. I don’t have to wait until I find a big meal.
Now that my sugar intake, caloric intake, meal size, and eating frequency are more consistent and inline with healthy eating, I feel better about my eating choices. I feel better physically and mentally. I wish I would have been eating like this before losing my stomach. If you’re looking for tips on how to eat after your total gastrectomy, consult your doctor and also the NIH. I also wrote a guide of things that worked for me after to help you live without a stomach.
2. Even greater importance placed on family and community
Before my total gastrectomy, I was very close with my nuclear and extended families. My dad, brother, sister and I have always been close. Now, however, after experiencing my mom’s sickness and death, my total gastrectomy, and other big challenges connected with CDH1, we are even closer than before. Without my dad and siblings (and the impact my mom had on me), I never would have had such an easy recovery from my surgery. When things get extra challenging or dysfunctional in my life, I think of them. I hear their voices in my head. Instantly, I feel better.
I also have a big extended family that I’m close with and some really close friends. A grandma, five sets of aunts and uncles, seventeen first cousins, a growing generation of nieces and nephews, and countless distant relatives who we keep in touch with. My family is oddly close and big. For instance, when I was growing up, my aunts, uncles, and cousins all lived within just a few miles of each other and my family. We’ve been very involved in each other’s lives. Some of my aunts and cousins are also CDH1 mutation carriers. We have formed special bonds through this CDH1 journey. It’s essential to have people who you can relate to through shared experiences. My relatives who don’t have CDH1 mutations and my close friends have also been incredibly supportive.
Finally, I have met many CDH1 mutation carriers in person and online. The CDH1 community is very knowledgeable, welcoming, and willing to help. I have learned so much from my fellow mutation carriers. Their help and support has accelerated my understanding of being stomachless and having a CDH1 mutation. It also has helped make tough decisions, like whether to have a total gastrectomy and when to have a total gastrectomy.
Experiencing the power of community in a challenging time of need, I now have a greater appreciation and respect for having strong community. This is one of my favorite things about being a CDH1 mutation carrier without a stomach.
3. New Perspective / Accelerated Maturation
After my total gastrectomy, I have a new perspective on life and also have matured much more than I would have otherwise. For starters, I have a greater sense of purpose in life. I am less willing to wait for what I want or to delay happiness. That’s not to say that I’m greedy, pushy, or snobby. What I mean is that I am living my life. Not the life that others want for me. Not the life society or circumstances dictate for me. My life.
Because of my mom’s death and my surgery, I am more empathetic to people experiencing health issues, loss of loved ones, and other complicated situations forced upon them. I didn’t realize what strength, community, and resolve it takes to get through big challenges like this. Now that I have experienced it, I am so much more empathetic to those who are suffering.
Moreover, I don’t sweat the small stuff quite as much. Some things that I used to worry about, that used to bother me, or that I would prioritize, now seem less significant, or even insignificant, to me. Here’s a trivial example. When my flights get cancelled or delayed, I don’t let it occupy my thoughts to distraction or ruin my day like I used to. Rather, I roll with it and make the most out of the situation.
I’m also less willing to put up with people’s bullshit. So many people I have encountered in my professional and dating life are manipulative, liars, cheaters, or have some other major subtraction to my life. Rather than going with the flow, I’m more willing to remove myself from the situation sooner than I was before. Life is too short to play other people’s games.
These changes in my life have caused me to mature beyond my years. This is one of my favorite things about being a CDH1 mutation carrier who has had a total gastrectomy.
Jon is a fellow CDH1 mutation carrier and has been thriving without a stomach since June 1, 2018. He has a real knack for understanding and organizing complicated technical issues and explaining them in simple terms. And, he has done just that with his incredible and informative website CDH1gene.com. Check it out!
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