It’s okay to have a bad week – an 18 month update

Early last year,  I blogged about Kubler-Ross’ five stages of grief.  It was more surrounding about my recent diagnosis of being CDH1 positive.  It’s applicable to a lot of life events and mourning the loss of your stomach definitely qualifies.

For some reason I had a difficult week a few weeks ago.  I woke up on Monday feeling extremely fatigued.  Not just tired but just not myself.  My weekend wasn’t too crazy so I couldn’t write that off as a reason.  Being in a healthcare field – I was able to pull myself together and continue motivating all my patients to persevere and deliver effective treatment plans but by night time I was wiped.  I thought I would just go to bed earlier on Tuesday and bounce back.  But same thing happened again on Tuesday.

By Tuesday evening, it all hit me.  My stomach is gone. It’s never coming back.  It unfortunate that I can’t eat certain foods and when I eat something that I can eat and is delicious, I can’t eat a lot of it.  I have to take a plethora of vitamins each morning.  I get lightheaded if I stand up too fast.  I have to wake up extra early so I have enough time to eat breakfast each day.   If I want to feel good for the morning, I have to eat oatmeal for breakfast.  I miss cereal.  I miss my stomach.

Maybe I should have waited another few years to have it removed? Maybe I could have lived my life a little longer with it? And so on and so on.

I don’t like people feeling sorry for me so I kept this all to myself.  Finally, Wed evening, I opened up to my husband and told him that I was having a hard week and that I really missed my stomach.  In a few simple words, he replied,

“Your stomach was going to kill you.  You made the right decision.”

I tell myself this most times when I start to feel frustrated by some stomachless challenges and I can get myself out of the funk within seconds but this time it wasn’t working.  It was good to hear it from someone else.

At the end of the week I randomly stumbled upon this letter that someone had shared on facebook.  It was all too appropriate and the timing was impeccable.

By that Friday I was feeling like my regular old self.

I am not writing this post for people to feel sorry for me. Please don’t. I am writing this to let all those CDH1 positive people out there who have had their Total Gastrectomies that it’s okay to have some time of weakness when you are always trying to be strong.

So following my not so good week, I’ve bounced back two fold. I’ve also made some great discoveries.

Right after surgery I tried not to combine liquids with my meals because it would fill me up too fast and I wouldn’t have room for those precious calories.  However, now I have realized that the more liquid I can consume BEFORE a meal, the easier time I have digesting that meal.  So now I try to drink some clear fluids prior to eating a meal to help get those digestive juices flowing or just prepare my new stomach for what is coming next.

When it comes to sleep, my sleeping patterns have never been the same post gastrectomy.  Some days I’ll sleep 10 hours a night and other times I’ll only require 4-5 hours.  Either way, I feel just fine when I wake up in the mornings.  After waking up at 4am back to back two days in a row I decided to investigate this a little further with my stomachless colleagues (thanks Steve, Rachel and Marne!).  Turns out we all have had this issues and we all figured it was just us.   I wonder if anyone else out there has this same issue?

I’m not so upset about this fact because I can get a heck of a lot accomplished when I wake up at 4 or 5am in the mornings.  I was happy to hear I wasn’t alone.

I stopped drinking Kefir a few months ago because to be honest, I didn’t love it.  But recently re-introduced it back into my diet and discovered that it has helped keep my GI flora happy and healthy.  I now try to drink a half a cup to a cup a day of it.  Kefir isn’t the most delicious but a necessity to staying fresh….if you know what I mean.

I’ve been doing strength training at the gym 2-3x a week and I am finally feeling like my strength is close to pre-surgery level.  I’m super happy that this has come back as I can now carry my entire grocery shop inside in one load.


The scale hit 118lbs this week and I was stoked. That is only 9lbs off of pre-surgery weight.  I knew it was likely temporary…and it was, but I haven’t seen that number in a LONG time.  I am sure that with continued strength training and continued eating, I will continue to gain weight.  After all, in the last year I’ve managed to gain 11lbs.

And to top it all off, I can now drink plain old water!  I still can’t chug it but it’s now an option. Some days are better for drinking it than others but I’m happy that it’s back on the menu.

It has taken me three weeks to hammer down and get this post out which only means one thing. Life is getting in the way!

Catch you all in a month. Happy Holiday shopping!







2 thoughts on “It’s okay to have a bad week – an 18 month update

  1. Hi! This post hit home for me, I’m 14 months post TG and my sleep has never been the same since my surgery. I also thought it was just me, I take “cat naps” at night, trying to fall asleep and stay asleep has been the hardest. My doctor said it was due to the depression that developed. Still trying to find a more natural way of falling asleep than with medication. Congrats on getting back to the gym! How are you handling the nutritional part ? I’ve been so discouraged, I hired an online coach to help build my strength and specifically told her I DON’T want to lose weight, we’ll she has me on a strick “clean eating diet” and expects me to eat 6 FULL meals a day. She calls my current eating habbits “grazing”, well that grazing gets me full! Just curious on your experience with your trainer 🙂

    • Hey Danielle,

      I am a big fan of group exercises and I have been doing Les Mill’s Body Pump (weight lifting) 1x a week, Les Mills Body Attack 1x a week, and recently returned to indoor rock climbing 1x a week.

      My trainer didn’t recommend any changes in my eating habits and we focused mainly on weight training. We didn’t do any cardio. It was nice to have someone to train with as I am not good at motivating myself to do a work out alone. I ended up completing six sessions with her. It helped me get back into going to the gym regularly.

      In terms of eating, I am able to eat 2/3 of a regular portion size over 30 minutes. About an hour later, I’ll eat the other 1/3rd. Over the last 4-6 months, I’ve pushed the amount I can eat because I felt like it was “stretching” out my new stomach. It lead to feeling uncomfortable after eating but it was only temporary and I think it’s helped increase the amount I’m able to eat in one sitting. Not sure if that is a recommended thing to do but it worked for me.

      I eat bigger portions at breakfast, lunch, and dinner. But eat between each of those main meals with snacks OR the rest of my bigger meal that I didn’t finish. After dinner I usually snack the rest of the evening. I don’t eat a lot of simple carbs (bread, pasta) and avoid produces with a lot of flour in them. I eat meals heavy on protein. I combine juice with my water when I work out to keep my electrolytes high.

      I wish you the best of luck returning to a regular work out schedule!

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