Before I start, please bear with me for a few disclaimers 🙂 As you read this, please remember this is my unique experience and everyone who deals with this illness may have a different experience. Also, I am the furthest thing from a medical expert, although I like to think I have a doctorate from Grey’s Anatomy University, so nothing I say should be taken as medical advice, ha! With that being said, in honor of Gastroparesis Awareness Month, today I’d like to share my experience with this illness.
A Little Backstory
I have been dealing with stomach issues for as long as I can remember. I have very specific memories from my childhood of stomach pain while waiting to eat, dealing with bloat, as well as reoccurring upset tummies. During my late middle school/ early high school years, I was told I was probably lactose-intolerant, and then later in college, potentially had issues with processed foods. None of these diagnoses seemed to ever be confirmed, mostly due to the fact that the symptoms and side-effects were never consistent. I could eat a few slices of pizza one day and be totally fine but then eat the same thing the next day and be sick within minutes.
Sometimes the pain I experience was not a result of something I ate, rather something I didn’t. Often for holiday dinners, I would forego eating breakfast prior to our mid-afternoon meals because I knew how full and uncomfortable I would be. More times than not, however, I would instead experience sharp stomach pain before even sitting to eat. The more I paid attention to this, I began to notice that I would go from being not hungry at all to immediately starving, resulting in those same sharp stomach pains if I didn’t eat something within a few minutes.
After many frustrating dining experiences, and a change in physicians, I was referred to a local gastrointestinal office for further exploration. At the time I was thinking perhaps it was related to a gluten-allergy, since so many people I knew were getting diagnosed with Celiac’s Disease.
How I Was Diagnosed
After tracking the foods that seemed to trigger my symptoms, my doctor first had me get an X-Ray to ensure their wasn’t an issue that could be seen, such as a blockage of some sort. When that came back normal, she decided the next plan of action was to schedule me for an Endoscopy, which is a medical procedure that exams your stomach and upper gastrointestinal tract with a camera-equipped tube that takes images of your esophagus, stomach, and small intestine (One of my favorite parts to mention at this part of the story was that I had this procedure done right before Christmas in 2019, and dreamt of Christmas cookies – very much sugar plum fairy and The Nutcracker vibes!). These results came back mostly-normal, with the exception the doctor was surprised by the amount of acid still in my stomach after over 12 hours of fasting prior to my procedure. This observation led to me completing a gastric-emptying scan, where I was served a bland meal of scrambled eggs and plain toast, and scan your abdomen at hours 1, 2, 3, and 4 after you eat it. The eggs contain a radioactive dye, which shows up in the scan to see how quickly you are processing your food. After 4 hours, I had only digested 80% of my food, where a normally functioning stomach would have digested it all, which, in fact, confirmed my diagnosis of Gastroparesis.
What Is Gastroparesis?
In simplest terms, mostly because that is how I understand it, Gastroparesis, or GP, affects the motility of your stomach muscles. This means that my nerves don’t know when to tell my stomach to empty, which is why it takes longer than normal for me to digest food. This undigested food is what causes the feelings of nausea after only eating a few bites, and the presence of lingering acid in my stomach is what causes those sharp pains I’ve been experience for years. Most times, doctors can’t explain what causes GP, and due to its rarity, there currently is no cure for it.
This condition limits what I can eat since I have to be a bit more selective for the foods that are easiest to digest. I often joke that the list of what I can eat is much shorter than the things I can’t, but I try to avoid foods high in fat, fiber, and dairy. I also am more selective about consuming carbonated drinks, caffeine and alcohol, as they can all slow down my digestion. My go-to foods usually are eggs, chicken or ground turkey, pasta and seafood. The biggest adjustment, however, has been that I need to eat closer to six, small meals a day, rather than just breakfast, lunch, and dinner. While I was saddened to learn of this diagnosis, I was grateful to finally have an answer after years of no explanation.
Where I Am Now
While I can still experience flare-ups when I’m at home, it is much easier to maintain what and when I’m eating from the comfort of my own kitchen. I also have mostly working from home for the better part of eighteen months, so I am easily able to eat multiple small meals a day. This has been such a blessing as I have navigated these new restrictions and routines.
Because I was diagnosed with Gastroparesis just a few weeks prior to COVID, eating out can be a bit overwhelming. I still experience fear of trying new restaurants without being familiar with their menu or how they prepare their foods. Likewise, I am nervous to head back into work full-time this fall, since I’ve had the luxury of eating breakfast when I get hungry, not just because I have to.
With that being said, I have found some ways to alleviate some of the symptoms. Other than being vigilant in choosing when or when not to eat something that could flare up my symptoms, I avoid sitting or laying down after eating – best case scenario usually involves a post-meal walk around our neighborhood. I also use a Digest-Zen essential oil to help with any pain or discomfort, or when I know I’ll need a little extra help in digesting a bigger meal. I also try to keep snacks on me at all times, in case I get hungry, so I can put something in my stomach to avoid the pain.
Dealing with GP is such a rollercoaster. I can be completely fine, great even, for weeks, and then out of no where, struggle to be able to eat without feeling sick. There is no way to predict when it may flare up, making me anxious about attending social gatherings, especially when I’m not sure of what is being served. I know it can be equally frustrating for those around me, especially for Jody, because of the lack of predictability of this illness.
I hope sharing a bit of my experience is helpful if you or someone you know is dealing with Gastroparesis. Thank you, as always, for reading, if you’ve made it this far! 🙂
4 thoughts on “My Experience with Gastroparesis”
Thank you for sharing your experience. While I do not (that I know of) have GP, I too have been dealing with a variety of digestive issues since college very similar to your as a matter of fact. My gluten free diet has helped, but I still deal with the unpredictable intestinal inflammation, bloating and other things that I will not mention here. I fully understand the struggles of eating away from home, sharing the unpredictable issues with a spouse and social anxiety of people encounters based around food. They believe my issues are a factor of my MS. My digestive tract does not give or receive “signals”. I agree that after 25 years it is just good to know that I am not crazy and it is something physical. I will have to put the essential oil in my digestive issue arsenal. Thanks for the post!