Sugar crash!

Saturday night before dinner I had quite a few bites of some leftover carrot cake. This apparently was just too much sugar.

Since I’ve posted photos of full energy Marne after running my half marathon, it seemed appropriate to post the polar opposite sugar crash photo…a reality of life without a stomach sometimes!


On a side note, my bloodwork came back and I’m still fighting my low prealbumin, an indicator for longer-term protein storage. From what I read about prealbumin, it’s stores for the last two weeks. My diet went downhill during our vacation, so I think this is to blame. I’m back into my healthy diet again, trying to bring those stores back up!! Plus I picked up my Creon prescription, so that should help. Omg, it was $190!!! It had better help a lot! And there’s no generic available.

Have a great night! And try not to eat too much sugar at once!

Follow up Appointment 8.5 months post op

I had my MD Anderson follow up appointment, took my blood and met with my doctor. All is well. I had lost another pound since my last checkup but it was kind of my fault… We took the family to Disneyworld and we were skipping meals and walking a whole lot. I knew I lost weight and have been working this week to put it back on. Really no big deal.

My poop floats… What that means is that the fats from my foods are not getting absorbed as well as pre-surgery. So I got a prescription for digestive enzymes. This should be easily sprinkled on foods and will help make sure I’m absorbing everything.

I have another 10K coming up next weekend. I’m doing well running 2-3x per week 5-6 miles each time and holding my weight. Disneyworld was a blast and we shut down Magic Kingdom one night at 11PM and another night at 1AM. My abs got a major workout carrying kids on shoulders throughout the park for 4 days!! I carried water, peanut butter crackers and almonds with me to keep up with meal skipping.

And for my friend & fellow CDH1er Steve, we ate at an amazing restaurant called Yellow Dog Eats. He’s got the “farewell stomach” tour going on; I’ve got the “stomachless & still enjoying food” tour going on. I had the pulled pork nachos and they were divine!! Enjoyed my glass of wine beforehand! I can’t describe it as well as Steve, but the onions were soaked in a vinegar-based awesomeness, the cream cheese with a chipotle sauce plus however they made the tender pork was amazing! It was one of those moments I wished I could devour it all, but I can’t. What I can do is enjoy a good portion and save the rest for round two!!

Brussell sprouts

I’ve been trying to eat healthier, so I added Brussell sprouts to the mix. I’d not really eaten these pre-gastrectomy, but they’re good for you so I gave it a go. I have to say, these are pretty tough for me post gastrectomy even 8 months post op. It takes an amazingly long amount of time to chew. So I ate 4 tops of the Brussell spouts and I threw the rest out. Hey, at least I can say I tried them. 🙂

Also I had mashed potatoes the other day…a very large portion. I have to say if mashed potatoes are really thick, you should stick with small serving sizes. I couldn’t drink water afterwards for an hour because I was so full. So, note to self on mashed potatoes.

Other than that, it’s been pretty uneventful and mostly life as usual. I can eat a very decent portion size now, just have to take it slow and chew well. In one sitting, I can eat a huge serving of spaghetti with meat sauce with a veggie side and fruit. I can also eat 2 slices of pizza at once. Sometimes I prefer 1.5 slices though from fullness. Every once in a while, some foods don’t work and I spit them back out. But that’s not happening very often..

Candy!!! I can eat cookies and chocolate…probably too much. And it’s usually without any kind of sugar crash. So for those of you chocolate lovers who might have a gastrectomy in your future, you should still be able to enjoy your chocolate!

My brother’s recovery is going well. Slightly different but similar to mine. He’s chowing down 700-1000 calories, is 3 weeks post op and is hoping to reduce his tube feeds soon. He feels full and can’t eat when the tube feeds start. I was completely unaware/not bothered when my tube feeds were running. Everyone reacts a little differently!!

Have a great night!

Fellow CDH1 Bloggers

I’ve recently heard from this amazing network of bloggers posting about their experience on the journey of finding out about the CDH1 mutation, going through testing and having a gastrectomy. We all seem to be at different stages in the process, so I wanted to share these links that aren’t listed off of I know I’m missing some links I’d found through the Facebook support site too. I’ll have to add them later. 🙂

I’m so thankful for the internet so you don’t feel alone in your journey. There’s quite a few of us across the globe!

The Daily Dump

It’s the beginning, not the end.

Genetically Challenged