No Stomach vs. No arm? A 14 month post gastrectomy update

I have been meaning to blog for the past month; however, June was a wild month.  Emotionally and physically.

About a month and a half ago, I was presented with a new job opportunity with a different company.  I have been with the same company since I graduated from physio school and they have been very good to me over the past six years.  Even more so over the past year as I recovered from surgery.  However, this new opportunity was a hard one to pass up.  There was a lot of opportunity to grow as a clinician.  After serious consideration and long talks with friends and family, I decided to take the jump and resign.

The unknown is scary.  Leaving something you are sure about to try something you have never done before is difficult.  You aren’t sure of the outcome so why would you change?  Jump back to December 2013, I was working full time, living a regular normal life, and then….CDH1 positive.  Do I remove my stomach? Do I keep it?  I knew that living without a stomach was possible but how would it affect me? Was I making the correct decision? It was the unknown.  We all know what I chose to do and now look where I am now.  Happier, healthier, and stronger. So although I don’t know everything about what my new job is going to shape up to be, I do know that it is yet another adventure and you don’t grow if you don’t challenge yourself every now and then.

Now for the physical event…and it’s NOT GI related for once! I was playing baseball three weeks ago and was sprinting to first base when the first baseman crossed the chalk line and I slammed into her.  Next thing I knew I was staring at the beautiful blue sky.  I got up thinking I was okay, but was quickly proven wrong.  As the game went on, my right wrist and elbow became increasingly stiff and swollen which eventually took me out of the game.  I figured I would go to bed and then wake up the next morning and be 100% better.   The next day, I couldn’t bend or straighten my elbow and my hand was incredibly painful.  After a quick visit to my MD (who basically said I don’t want to see you, go to Urgent Care), and four hours in urgent care – I returned home in a sling and put off work for a week.  Luckily there was no fracture but to spare you all the details, I have a new respect for people who only have one arm.

The reason I am sharing this story is not for sympathy but to demonstrate success.  One day I caught myself saying, “I would rather have my stomach removed then to go through this with my arm again”.  The surgery is becoming more of something in the past and something I no longer dwell on 100% of the time.  My “new” normal is really becoming my normal.  The past two months have been huge for my recovery and I feel like I’m almost there.  At my last follow up with my surgeon, they let me know I was 2-3 months behind in my recovery due to the stricture and that I should be fully recovered by August.  I believe it.

So what does my normal look like now?

  • I still have to eat every 2-3 hours.  If I don’t, I usually start to get tired which is followed by bouts of feeling lightheaded and finally a throbbing headache. That usually reminds me that I don’t have a stomach.  I continue to live the hobbit life and have 2nd breakfast, 2nd lunch, 2nd dinner, and dessert.
  • I am able to tolerate more sweets but that usually results in flatulence.  Just know you’re taking one for the team, sorry friends.
  • I still don’t tolerate eating white bread products or heavy carbs (i.e. bagels, hot dog/hamburger buns, etc).  I end up feeling really dopey, foggy, and often fall asleep immediately after if I’m at home.  It’s just not worth it.
  • I eat a diet high in protein.  I still drink smoothies and add protein powder to my coffee.  I continue to make my own protein bars.
  • I am able to work part time.  It takes me about 15-20 minutes to prepare my food for the day for work due to all the snacking. I have to wake up 20 minutes earlier to eat breakfast because I can no longer eat cereal in 5 minutes or less.
  • I take supplements daily – B12 sublingually, multivitamin, vitamin D, calcium, iron
  • I miss eating large portions of ice cream, bagels, and sandwiches.  Actually just large portions in general.
  • I haven’t been able to break the 110lbs barrier.  I’m used to my body image and am only reminded that I am skinnier when I look at photographs of myself.

So that about sums up my June.  Last week I was notified that my hospital roommate recently passed away due to cancer.  She was an amazing woman, a fighter, and the best hospital roommate I could ask for!  I kept in touch with her over the past year and it was a shock to find out about her passing.  We had a lot of visitor parties in our hospital room and I was able to get to know some of her family.  My sincerest condolences to her family and friends.

It’s events like these that remind me that life is fragile and things can change quickly.  If you think you are having a bad day, just know that someone else is struggling to survive.

Catch up with you all in August!

Guest post from my mom – 5.5 years post gastrectomy

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!