Happy Canada Day to all my fellow Canadians!
Today’s post is a little different from my usual posts. Recently, my genetic counselor asked for some tips that we could give others about living without a stomach. She wanted to assemble a resource guide to help others with the CDH1 mutation decide to have surgery or not and to answer common questions about life after a total gastrectomy.
I decided to ask my mom if I could share her response to some of the commonly asked questions when deciding to have a prophylactic total gastrectomy. Of course she said, “no problem”. My mom is now 5.5 years post total gastrectomy and is doing fantastic. Although my recovery had some bumps in the road, it was a lot easier because I had my mom who had already been through it to give me advice.
So here’s my mom’s responses to some of the commonly asked questions about having a total prophylactic gastrectomy and also some of shared experiences about her recovery. Everyone’s recovery is unique and my mom was in her early 50’s when she had her surgery.
On my decision to have the surgery:
Once I found out I was positive, all I could think of was my children and how they would be impacted. I wanted to set a good example for them and wanted to be alive to watch them grow. Because of Technology, I was given choices. Live a different life following surgery or have an 80% chance of a bad cancer diagnosis (without any control of outcome) sometime in the future.
I chose to do something with the knowledge I had been given. I was not afraid of surgery.
Gastrectomy truths and how I kept myself happy during the recovery period:
Your life will be different post gastrectomy. It will be a “New Normal” Not the same as before, not better, not worse, just different. Whenever I am having a bad “Food Day” I always remind myself that I could be dead. Makes me feel a little better instantly. I ride out the uncomfortable feeling and it resolves 20-40 mins after the offending food(s) have been ingested.
Keep a food journal. Your food intake will be based on trial and error. Try something and if you have issues, leave it and try again in a few months. In the beginning, eat everything you can manage. Don’t worry about nutrition. You have vitamins for that. Just get as many calories as possible. Avoid sweets or simple carbohydrates (white bread, doughnuts, bagels) Rice, eggs, ham, nuts, cheese, beans, ritz crackers and processed foods go down easy. Fatty meats are easier to eat than lean and rare easier than well done. Prime rib and New York steak and salmon are favorites. So are French fries! Eat mashed potatoes, squash, carrots and peas and oatmeal and cream of wheat at every opportunity.
For someone who had eaten “healthy” and watched for weight gain, my “new normal” was whole new way of thinking . I still enjoy food, can eat as much as I want and not gain weight. Bonus.
For the first months post surgery, I would feel “stretched tight” after a meal. Get up and walk around. If you feel nauseous, do jumping jacks. It’s the last thing you want to do but it works. The uncomfortable feeling will subside faster.
You will be flatulent and smelly. Your body will eventually adjust to digesting the fats. I always have “Just a Drop” in my purse.
Your stool will be many different colours and usually looser. 5 years post gastrectomy and my poop looks like it did pre surgery.
You can drink alcohol and it hits you fast. It was at the 2 month mark before I had my first glass of wine.
Do you regret having the surgery?
Absolutely not. I am in much better shape physically than my peers. Go to the gym 3-5 times a week. Eat everything I want. Thinner than I was and have bigger boobs. Love watching my family reach their goals.
Life is good.
Life is good mom, well said!