I have gastroparesis.
Gastroparesis is a condition that affects the normal spontaneous movement of the muscles (motility) in your stomach. Ordinarily, strong muscular contractions propel food through your digestive tract. But if you have gastroparesis, your stomach’s motility is slowed down or doesn’t work at all, preventing your stomach from emptying properly.
For me, how it feels varies from day-to-day or even minute-to-minute. Sometimes it feels like what I eat gets stuck in the middle of my chest. I’ll develop nausea out of nowhere, nausea that ranges from annoying to debilitating. I’ve had projectile vomiting. Or I’ll experience a severe burning sensation that feels like my insides are eating themselves. Sometimes I’m able to taste what I had for breakfast while trying to fall asleep. I’ve also had the pleasure of having my breakfast come back up my throat when I lay down to go to bed. Yuck.
BUT… I’m thankful to say that I now have many days when my symptoms are just a minor annoyance instead of debilitating. For the average person, the stomach should be empty within 3-4 hours. My nuclear stomach emptying study showed I had 76% left in my stomach 4 hours after eating scrambled eggs and toast. One doctor documented that this is a “very convincing gastric emptying study” and another said I have “one of the worst gastric emptying studies I’ve ever seen.” My favorite response from a provider is “I thought the gastric emptying time in your records was a typo.” Even so, I get the impression that my symptoms are not as severe as others. So what works for me, might not work for others.
I would like to give a shout out to my gastroenterologist for referring me to Virginia Mason’s gastroenterology group. Not only do they have one of the world experts on gastroparesis, they also have a nutritionist on staff that provides free consultations. The free part is awesome, but what’s even more awesome is that she cares for a lot of gastroparesis patients and can offer suggestions based on what has worked for others.
In this post, I’m going to talk about the medication, diet/eating approach that is working for me. I plan to follow-up with a post about lifestyle changes and how changing how you eat impacts social interactions.
UPDATE: the week after initially publishing this post my gastroparesis flared up, so I’ve updated with some additional tips.
These are the medications I use to prevent symptoms.
- PPI to control acid. I take lansoprazole simply because that is what I bought over-the-counter when I first became symptomatic and no provider has recommended switching because this currently works for me
- Ranitidine. I added this to my daily meds (I only need it in the AM) in the fall when the lansoprazole wasn’t cutting it on its own. I can’t tolerate the pain without both meds, which is disappointing because both can cause hair loss.
- Miralax. My “gastric dysmotility” extends beyond my stomach to the rest of my gut. So constipation is a factor. I didn’t find much relief with magnesium supplementation (although I still use it). Instead, I use 1/8-1/2 tsp of Miralax in my morning protein shake (I was told to dilute in 12-18 oz of water for best effectiveness).
- Multivitamin. To prevent nutritional deficiencies associated with gastroparesis.
PRN / As needed Meds
These are what I use to control symptoms. Sometimes I can’t tell if I am nauseated, having heartburn, or am hungry. So I just go through the options until I get relief.
- my #1 lifesaver: TummyDrops!
- I love these and try not to leave the house without them. I hate eating out and then feeling miserable and having nothing with me.
- I use the Ginger Pear drops for mild nausea and the Double Ginger Peach for more severe nausea or if it feels like what I ate is “stuck.” If I’m having a “bad” day, I sometimes use one before I eat to get my stomach moving. I like that they are hard candy so I can pop it in my mouth and go without having chewy ginger candy stuck to my teeth.
- Ginger water was also recommended, but I haven’t tried it
- I tried making my own ginger candy, but it was time-consuming and it went bad before I used all of it.
- Tip for making your own ginger-related remedies is to drop the ginger in boiling water for 10 seconds to make the skin easier to remove
- #2 eat something that I normally tolerate
- #3 Mylanta
- If you want to use Mylanta, don’t do the generic brand plain flavor 🤮. The minty one is decent. I’m about to try the Vanilla Carmel and hope it doesn’t ruin those flavors for me forever.
- Others have success with different antacids, but I respond better to magnesium and aluminum.
- #4 Reglan. I try to avoid this until I absolutely have to take it. And I only do 1/2 tab. This is basically my “I’ve done everything and I still feel so terrible I can’t go to sleep” solution. I’m prescribed enough to use daily, but I typically use it once a week or less. But I always try to keep some on me because sometimes the need to vomit hits me out of nowhere and it responds to nothing except Reglan. And working or doing normal daily activities are really challenging when you feel like you have a stomach bug or the flu.
- Why do I avoid it if it works so well? Reglan has some side effects that I want to avoid and I’ve been told if I develop them (EPS or extrapyramidal side effects) I have to stop using it. My understanding is that the likelihood of a reaction is related to how much/frequently I use it.
- Note: one of the things that helped point us to a gastroparesis diagnosis was because Zofran doesn’t work AT ALL, but Reglan does. Zofran still works for nausea with other causes (i.e. gastroenteritis or influenza)
I’m no longer able to tolerate ibuprofen, which was my go-to options for pain management. So now I use acetaminophen and a supplement called Curamin as needed.
THINGS TO AVOID
Nausea is a powerful deterrent / negative reinforcement. So, I quickly learned that overeating was a recipe for feeling horrible. When I feel full I have to stop right then. Even “one more bite” is enough to ruin the rest of my day.
I’m pretty disciplined about avoiding foods that irritate and/or slow gastric emptying. With food lingering in my stomach for hours I develop gastritis pretty easily (which is inflammation of the stomach lining… it’s a painful, burning sensation that feels like my stomach is eating itself).
Here are the foods I avoid:
- Coffee. even decaf. This makes me sad because I love the taste.
- Acidic foods including tomato sauces. I miss spaghetti and lasagna!
- Citrus. I still put citrus juice in recipes, but I am careful with the amount.
- Fried and/or high-fat foods. Fat slows down gastric emptying. But I still have the occasional order of french fries
- Soy. I found that soy makes my symptoms worse. I can tolerate small amounts but mostly avoid all but soy lecithin.
- Chocolate 😭… but only when I have flares
I tried removing dairy, but that didn’t seem to make a difference and including dairy provides a lot of additional, easy to eat options. I was gluten-free prior to this diagnosis.
Here are PDFs of handouts that I received that are very helpful. I recommend reading them. I discovered a lot of the info in these handouts by trial and error. I wish I had access to them earlier (instead of 2 years after my initial diagnosis)
- Diet interventions for gastroparesis by University of Virginia Health System Digestive Health Center of Excellence
- Gastroparesis diet guidelines by Virginia Mason
- Balanced snacks by Virginia Mason
Other resources I discovered while writing this blog
- Gastroparesis Patient Association for Cures & Treatment Inc (G-PACT)
- The Gastroparesis and Dysmotility Association (DPDA)
- American Neurogastroenterology & Motility Society
- National Organization for Rare Disorders
I have experimented with multiple eating plans:
- five shakes a day plus one meal
- two shakes a day (beginning and end of day) plus two snacks and one meal
- one shake a day, 1-2 meals and 2+ snacks depending on how hungry I am / activity level.
I vary my eating based on how I feel and what I’m doing that day. But one thing I don’t mess with is how I start my day.
On the rare occasion where I decide to start with something other than a shake, I end up regretting it. I call these “dietary indiscretions”
I start every day with a protein shake that includes collagen and Miralax. I like to mix my shake with a milk frother, I get fewer clumps than when using a protein shake bottle and I can drink my shake in a mug (fewer pieces to wash! yay!). This provides enough sustenance for my stomach to tolerate my morning meds and supplements.
- I supplement with vitamin D, multivitamin, biotin and collagen (also for the hair loss), magnesium, and omega/fish oil. This is based on blood lab results and recommendations from my doctors based on my health.
- Burping fish oil is nasty. If you need fish oil, I like these burpless fish oil capsules.
The texture and taste of whey protein shakes are WAY better than pea protein. However, not all whey protein is created equal. My all-time favorite is Isagenix Peach Mango. I could drink that every day multiple times a day. Unfortunately, it’s pricey. Orgain branded protein shakes were recommended by my nutritionist and I like them (some varieties are even carried at Costco). When I’m tolerating chocolate, the shake I use the most is Chocolate Orgain Whey Protein Powder.
Here are some flavor combinations to break up the monotony:
- Orgain Natural Unsweetened protein powder OR plain whey protein PLUS either water or almond milk PLUS
- 1 Tablespoon Jello sugar-free pudding powder (I like banana, butterscotch, pistachio, vanilla, white chocolate. Lemon was disgusting)
- Sometimes I like to combine the White Chocolate SF pudding powder with 1 scoop of JUCE (super fruit and veggie powder)
- Or I’ll combine the pistachio pudding powder with a scoop of powdered green stuff
- Orgain chocolate protein powder + Powdered Peanut Butter
- I don’t like the Orgain vanilla protein powder taste, so when I had a container I wanted to finish, II added 1/2 packet of Splenda + 1/2 tsp cinnamon and/or 1 tsp cocoa and/or 1 tsp vanilla abstract
I was inspired to mix flavorings by proteinpow.com
I eat my main meal around lunchtime. This is when my stomach seems to work the best. I feel like my stomach takes several hours to “wake up” in the morning. And then I need to finish eating 3-4 hours before going to bed (since we want gravity to help with stomach emptying), so that makes dinner challenging especially when I’m working 12-hour shifts.
Typically, I only eat 1 main meal per day, the rest of my nutrition comes from smaller (100-200 calorie) snacks spaced throughout the day
The recommended “plate” for gastroparesis, is 1/3 protein, 1/3 starch, 1/3 cooked/pureed veggies and/or fruit.
I try to do 1/4 lean protein + 1/4 complex carbohydrates + 1/2 fruits and veggies, which is what I learned to do when losing weight with Isagenix (which is very effective for healthy weight loss, especially abdominal fat, but also very expensive).
But to be honest, my meals are often higher on the starch/carbs and lower on the fruits/veggies. I may start adding JUCE (super fruit and veggie powder) to my daily shake to increase my micronutrient intake.
I love using sweet potatoes as my complex carbohydrate. It’s easy to digest, tastes delicious and is great left over.
It never occurred to me to look for gastroparesis recipes or cookbooks, but my nutritionist recommended The Gastroparesis Cookbook by Karen Frazier. (update: After seeing this post my Mom bought me this cookbook. I LOVE it. It clearly indicates which recipes are GERD-friendly, SIBO-friendly, gluten-free, etc. Plus it has great information and tips for managing gastroparesis. I HIGHLY recommend it!)
I work 12 hour days, so I pack a lot of snacks. Here are my main go-to options.
- string cheese and/or low-fat baby bell cheese (fat decreases gastric emptying, so low-fat options work best. I think low-fat string cheese has a weird texture)
- Chobani fat-free Greek yogurt + honey (sometimes I use real maple syrup instead and/or add berries and/or granola)
- Citterio Genoa + Provolone (Costco or Trader Joe’s)
- 1/2 protein bar (protein bars may be too dense for your stomach, so be careful)
- I occasionally use Isagenix bars. I like the chocolate peanut crunch (favorite because it keeps me satiated), chocolate decadence, chocolate crisp.
- Rx bars was another recommendation but I haven’t tried them since developing gastroparesis.
- Homemade almond butter on GF bread. I put 1.5 cups of raw almonds and 1 tablespoon of extra virgin olive oil or almond oil into my Blendec twister jar. It takes less than 1 minute.
When my stomach cooperates, I like to include raw nuts and raw fruits/veggies. When my gastroparesis flairs, I don’t eat these.
- peanut butter and apple
- hummus + celery (I avoid spicy hummus because spicy foods increase gastritis and acid reflux.)
- Epic bison bars (I get them at Trader Joe’s)
- a small handful of almonds (only if your stomach tolerates them. I buy the mini packs at Trader Joe’s when I can)
- For more ideas check out Balanced snacks by VM, however, not everything on this list is gastroparesis-friendly
Thankfully my team has provided me with options should my symptoms increase/become unmanageable.
Supplements & Medications
- FDguard. I’m ordering some now and will see how it goes. (update: Unfortunately, I noticed no difference when using this)
- Domperidone. I plan to get some next time I’m in Canada (update: turns out my MD is no longer allowed to prescribe medications not approved for use by the FDA)
- Erythromycin. We haven’t tried this as my symptoms are controlled and its efficacy can wane with long term use. We want to keep this option available if my symptoms become worse / result in a hospitalization
- Wheat Dextrin. It’s gluten-free despite the name. This is on my list of options if Miralax doesn’t “do the trick.” What’s cool about it (unlike Miralax which can only take you from constipated –> soft –> WAY TOO SOFT) is it can be used for both constipation and diarrhea. For constipation, it is added to water and for diarrhea, it can be sprinkled on food.
If we get to the point where my symptoms are unmanageable, I’ve been told I have these options:
- Gastric POEM
- Pyloric Botox injections
- PEG-J (Gastro-jejunostomy tube)
- Enterra Neurostimulator (Personally, I’ve placed this in my “absolutely last-ditch solution” bucket)
Unfortunately, not every gastroparesis patient is the right fit for these options.
In my research, I discovered some other options for gastroparesis associated with GERD: nissen fundoplication and Stretta.
If you take nothing else away from this blog:
- Try TummyDrops. Serious, these candies keep me living the life I want to live.
- Avoid overeating
- Figure out what foods work for you
- Stay AWAY from what foods that irritate your stomach. Just don’t do it. I know it’s tempting… but that bite is not worth it.
- Start your day with liquid foods
- Eat your main meal in the middle of the day
- Work with your care team to find a medication combination that works for you
CLOSING & DISCLAIMERS
I hope this was helpful. And I’d love to hear tips that others with gastroparesis have discovered. Please comment or message me!
This post is not meant to replace medical consultation and advise. I am simply sharing my experiences with managing the day-to-day pain and discomfort of gastroparesis in the hope of encouraging others and providing access to the information/resources I wish I had encountered sooner.
This post contains NO affiliate links. I’m only including links to products because I want to make it easy for others to find options that work for them. If you’re interested in using any of the Isagenix products, I know a great coach (who is not me!).