Well, things with gastroparesis (as we are currently naming it) have gotten bad pretty quickly. My 18-month-old eats more than I do.
Since my last update, I have lost more weight, can’t have a bowel movement at all, and am on 75% liquid diet. It’s like my digestive system has just…stopped.
Can I just take a moment to express some pent-up feelings?
I am INTENSELY CRAVING avocado toast with olive oil, course salt and 3 runny eggs, a big bowl of beans and rice, hummus with chicken, bread and butter, and…oh my gosh…vanilla cupcakes with chocolate buttercream frosting.
But I have no way of satisfying these cravings right now.
Aghh…I just want to be able to eat again. This has been and continues to be SO hard.
My Current Daily Eating Routine with Gastroparesis
After much trial and error, I have figured out that if I start the day with solid food, I may not be able to eat again. But if I start the day with liquid, I can usually end the day with a tiny amount of solid food.
I start the day by making my high protein, high-calorie weight gain smoothie. I was getting tired of the banana vanilla version, so we switched it up to a chocolate triple berry smoothie that tastes like a brownie. It helps with my chocolate cravings.
I can only take 2-3 sips at a time until I feel full. So I sip the smoothie once or twice every hour or so until I’m mentally done with it. In addition, I also have sips of water and tea along the way.
Sometimes in the afternoon or evening, my stomach will empty and I’ll be able to eat my 1 tiny savory meal for the day: 1/3 c. bone broth rice and 1 egg with salt, black pepper, and a drizzle of olive oil.
I. savor. EACH. bite. And when it’s gone, my stomach feels physically full, but the hunger pangs continue deep in my stomach for hours. Sometimes they are even painful.
Once I have my solid food dinner, I usually can’t eat again even though I feel starving. Every once in a while, my digestion will pick up and I’ll be able to eat a few teddy grahams before bed. But I don’t count on it. Many nights I go to bed very hungry and very weak.
Weight Loss from Gastroparesis
Not only is my frozen digestive system creating problems…the weight loss itself is starting to cause concerning symptoms as well.
- I’ve begun to have lapses in my memory and awareness. I’ll walk from point A to point B, then not really remember how I got to point B or where I placed my phone and keys along the way.
- Simple tasks like putting away laundry or taking a shower exhaust me to the point of needing to lay down.
- I often feel cold and use a heating pad to warm myself up.
- At night my muscles and bones start to ache like they are being broken down. Intense exhaustion lays over my chest and shoulders like a weighted blanket. Sometimes I feel like I don’t even have the energy to form sentences. In these moments my stomach growls with intense hunger pangs. But I’m too full all at the same time.
Mental Health Struggles with Gastroparesis
I am SO ready to not have to bear this load by myself anymore. I am so ready to get imaging done and have answers. As hard as it has been physically to endure these symptoms…it has been even harder mentally.
In moments when I am alone or sitting to rest, my mind starts going around and around…
“what if you’re crazy?…what if you’re making all of this up?…What if the tests come back with nothing and all of these symptoms have been in your head?…what if YOU are the problem and you’re wasting everyone’s time?”
I reply, “No…that can’t be true…I LOVE food, I literally have a FOOD BLOG!…why would I be starving myself on purpose? All I want to do is eat good food..all I want to be is healthy…If I could snap my fingers and be 20 or 30 lbs heavier I would!…All I want is to have a healthy, feminine body that is strong for my family, beautiful for my husband, and that can bear children healthily…there’s no way I am making these symptoms up.”
The accusations return, “But what if you ARE crazy and you just don’t know it? What if this is all one big charade…no one will believe anything you say anymore if you are making all this up.”
Another frequent dialogue that goes around in my head is —
“What if my situation isn’t “bad enough” to deserve help? Maybe I should wait a few more weeks just to be sure that I am legitimiately in need of help”
I reply “but waiting is what got me here in the first place, isn’t it??…I honestly should have gotten help sooner!”
“But if you wait a little longer maybe you’ll be able to figure it out on your own and everything will be okay again. You wouldn’t want to waste people’s time, effort, and money, would you??”
And at meal-times, when everyone else is enjoying lots of delicious food, I talk to God in my head–
“God, oh my gosh…that looks SO good…that SMELLS so good. I so wish I could eat that. God, I want to eat 5 plates of that…I am SOOO hungry. God, help me to get through. I just want to eat.“
Next Steps for Addressing Gastroparesis
I saw my primary care doctor this week, and we both agreed I need help ASAP. We also both agreed I should try to avoid going to the ER since I would probably be flagged as having an eating disorder.
So he wrote me an urgent referral for imaging and told me to go find a GI specialist myself. (Why is our medical system this way??)
We tried so many places…both calling on the phone AND walking in in-person. “Sorry, we can’t help you. Sorry, even with a STAT referral the earliest appointment to see a specialist is May”
Finally, the last place we tried got me an appointment for this week. I’m hoping I’ll have answers soon.
Closing Thoughts
For now, I’m holding on to the all-sustaining love of my God. As a favorite song of mine says, “It’s not my zeal, it’s that Your love is strong. It’s not my strength, it’s that You’re faithful.
“Even when I walk through the darkest valley, I will not be afraid. For you are close beside me” (Psalm 23).
My soul doesn’t want to walk through this dark valley. I often pray, “God, can we please be done with this trial?”.
But I realize that if God is in the dark valley, then the safest place for me to be is in the dark valley alongside Him, allowing Him to protect and comfort me.
I am convinced He must have a plan for all of this. It doesn’t make any sense right now, but I am holding to the hope that He must be up to something good.
More like This
The Gastroparesis Diaries: It’s Back
My Healthy High-Calorie Weight Gain Smoothie Recipe
Hey! I’m so glad you’re here. Share this post with anyone who you think would find it helpful.
Wherever today takes you, take time to nourish yourself — body, mind, and soul <3
Warmly, Caroline
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