I’ve been promising this time and time again. Finally, I’m here to deliver! While this post is an update on my own health, I’ve learned a lot through the process of everything and I know there isn’t necessarily a ton of information out there about gastroparesis, so I want this post to also serve as a resource for others dealing with it.
I’ll give a quick summary, but here are some posts where I talk about it. It’s honestly had to imagine now how bad it was then. I don’t think my posts exactly convey it either. I’ll give a full summary but here are some posts where I discuss what was going on:
What is gastroparesis? It’s essentially stomach paralysis. Delayed gastric emptying. It means food leaves the stomach much slower than normal This causes nausea, acid reflux, bloating, and heartburn.
Summary of my illness: Once upon a time I had plantar fasciitis and took daily Advil to try to attack the inflammation. Everything was dandy until one morning I had 2/3 of a cup of instant coffee and got really sick from the caffeine. I thought it was just a coffee overdose (that was DEFINITELY a factor) until it started happening again. And again. And again. And then daily. I had these horrible flare ups where I would feel really nauseous, like there was a bubble in my throat, it was hard to swallow, I was really tired and/or light headed, my resting heart rate was elevated, and my stomach expanded like a balloon.
This started happening in February 2015. I remember that first quarter I had to give a presentation, and I was sitting outside beforehand prepping for it. I felt really sick and was SO lightheaded, I wasn’t sure how I was going to get through. My heart rate was around 100 bpm just sitting there, whereas normally it would be around 70 or below.
I saw lots of doctors. First I was diagnosed as having sort of a “pre-ulcer” where I didn’t quite have a hole straight through my stomach lining, so I started proton pump inhibitors (PPIs). I did an elimination diet. I started avoiding gluten spring of 2015 as part of my elimination diet, but that summer I didn’t really adhere to it. At the time, i thought winter was the worst of my flare ups. Summer was ok. A little bit better. Then, at the end of summer, I had what was one of the worst, if not the worst, flare ups. After a trip to Hawaii, I came back feeling sufficiently terrible that I went in for an endoscopy just days after my appointment with a gastroenterologist. I had been mostly avoiding gluten beforehand, so before the test I had some normal crackers to try to get something to come up on the Celiac biopsy if there was something there. I was SO sick that night. I felt like I was dying. I spent most of the night lying on the floor.
The endoscopy showed nothing abnormal.
However, I continued to avidly avoid gluten.
Fast forward to December 2015. I was feeling a little bit better, but a bad flare-up prompted to to schedule the final rule-out test: a gastric emptying test. (See my experience here.)
As I sat in the waiting room and googled the condition, I figured it sounded about right.
I was not surprised when, nearly a year after I first got sick, I was diagnosed with gastroparesis.
At this point, I was still taking PPIs and had been off and on for a while.
Gastroparesis is a chronic condition with no great cure. Sometimes it goes away, sometimes it’s a lifelong thing. There are heavy meds to treat it but they can have pro kinetic side effects. (GP is often due to damage of the vagal nerve so some medications try to stimulate this.)
With answers came a drastic overhaul of my diet. That changed everything. A lot of the things I had intuitively started to do because I knew some things made me sick. My sentence: low fat and eat half meals (not less food per se, but small meals more often so my stomach doesn’t have to handle so much at a time.)
Oh, and lots of soup. Far easier to digest. Thanks to my illness, I became the soup queen. We even made Christmas dinner in soup form for me!
(It was super delicious, so no one was complaining!)
Slowly over the course of winter and spring, my flare ups became less severe, and often had an obvious cause (high fat or too big meal). At the same time, I still didn’t feel 100%. I don’t think I ever went a full hour without worrying about my stomach and if a flare up was eminent (not an hour for over a year…). Certain situations gave me a lot of anxiety because of this. It was also exhausting teaching cycling because for that year, it was a battle to feel well for my classes (although I never missed any.)
But I was getting better. I was healing. Finally in the spring, I slowly tapered off my PPIs. When I first was off them, I had terrible acid reflux and had to take Tums really regularly to help manage it (this is common when going off PPIs).
But this summer, things improved a ton. I think this is for several reasons.
- My body finally adapted to not having PPIs (and my stomach acid production normalized essentially).
- I had full control over my meals and was cooking for myself (vs. the chef in my house/dorm) so I could make the best, lowest fat options (fat is still a major issue for me.)
- Time. Whatever was going on needed time to heal. Flare ups can be caused my inflammation, so maybe that finally went down.
Now, things are much better. I’m not perfect, but if I ever feel bad there’s a clear cause and I have a good understanding of what’s going on. And besides my horrible coffee-induced flare up, I don’t tend to have those major flare ups, just generally feeling gross. I’m still not eating gluten. I have no idea what kind of issues it may or may not cause. I need to do a trial but haven’t found the right time.
I have determined a few things that cause my issues. I have a magic number (calories) for how much food to eat at a time and throughout the day. While going over this number usually doesn’t cause a flare up, it may cause me to feel less than amazing. I can’t eat a lot of fat. A tablespoon of sunbutter is pushing my limit for fat at a time. Lots of meat can cause issues (especially fish because of the fat.) I have to be super careful with ice cream and will only buy low/reduced fat. Caffeine is the devil and my caffeine tolerance is lower than ever. Strangely enough I think lots of rice causes issues, which becomes a problem if I eat a lot of rice based GF baked goods. Spicy things are usually not the best, and neither are tortilla chips/popcorn.
It’s always a balance for me about not being too hungry or too full as well.
So if anyone is reading this who had GP, here are some of my tips and tricks:
- Listen to your body and be intuitive. Sometimes I have an aversion to something without consciously being able to explain it. When I don’t listen to my intuition I usually regret it. The body is pretty smart about what makes it nauseous.
- Small meals and low fat/low fiber are key. And while I’ve never been a big fried food person, those are probably best avoided.
- Tums and pepto are a godsend and any issues I have these days are managed with those.
- Ginger is surprisingly amazing. I knew it was supposed to help quell issues but I didn’t realize how much until this spring. A hot mug of fresh ginger+honey is great, and crystallized ginger works well too. I also love making ginger-heavy soups.
- Check your hydration. Sometimes I feel bad when I don’t get enough water.
- Aloe water is another good natural remedy.
- Regularly probiotics may help.
- Try to reduce stress levels in general.
- Get sufficient sleep.
- Soup is amazing and easy to digest. It’s a great way to get those veggies in as well!