My stomach issues have been slowly getting worse and it’s been very disheartening. The delayed gastric emptying has hit ridiculous levels, and the pain and nausea can be incapacitating after I eat.
The absolute worst episode was the weekend my mother-in-law was in town… Of course, when people are in town, we try our best to not let my health mess with our plans. Becky, my MIL, was here from Friday night until midday Sunday.
- Friday, we went to Olive Garden for dinner… we hadn’t gone to Olive Garden in FOREVER because they got rid of my favorite dish. Anyway, I ordered cheese ravioli (I love ravioli!) which comes with a choice of soup or salad as a first course. If you aren’t familiar with Olive Garden, they also have unlimited bread sticks, which are probably baked in Heaven or something because they are absolutely delicious!!! I don’t like salad, and I don’t ever order salads from restaurants because I’m allergic to cabbage (jury is still out on how badly, and if I’m allergic to cooked cabbage, but raw salad cabbage causes problems for sure), so I got the minestrone soup. I love the minestrone soup, especially when you dip the heavenly bread sticks in it! So I ate the soup, which has kidney beans in it, and four bread sticks. I was already hurting by the time my ravioli arrived, but it looked so good! I was able to get two ravioli eaten before I got full body chills, which is my cue that I’ve way overdone it. Oops. So I had to box up the rest of it. I was in pain and nauseous for the rest of the night. My stomach was bloated, like I was a few months pregnant. I had intestinal spasms that were at least kind of productive, but it’s always painful. I took a Zofran and managed to get to sleep.
- Saturday morning, I woke up and I was still quite full and uncomfortable. We had a big day planned, so I managed to get myself dressed, and gave myself a pep talk. I was able to drink an Ensure to prevent my morning pills from making things worse. Then we drove down to Garden of the Gods and went on a short (one mile) hike, which tested my current limits (ugh) but was quite beautiful. Becky wanted Mexican food for lunch, which didn’t sound good to me but nothing really did and it wasn’t worth arguing, so we were able to find the restaurant she was talking about – a local Mexican restaurant that my BIL had taken her to once, and Dan and I to once. I was extremely nauseous, so I was trying to eat the chips, but they ended up getting devoured faster than I can eat anything and refills weren’t free. I had to specially request the kitchen make me a bean and cheese burrito, because nothing else sounded like it would sit right (too big or just not something I like). Usually, I eat half of my burritos from Mexican restaurants, then I take the other half home. Also, most Mexican restaurants have massive burritos, this one was actually quite normal in size (just barely bigger than what I make at home). I still only managed to eat half of the burrito, and about half of the sides, then I started to feel horrendously ill. Odd. I’d taken a Zofran before the food arrived, so this was really not a good sign. I boxed up the rest of the food. About thirty minutes later, I felt like my stomach was going to explode! No idea why, because normally I only get bloated from bread products. I do get sick from fatty foods, but not usually bloated. The overfull sensation was still very, VERY present as we got ready for the Dysautonomia Trivia night (so much fun). I knew I’d need something small to keep me from going brain dead, so I managed to choke down a tiny amount of buttered noodles, which is a “safe food” for me. During trivia, I was drinking ginger ales to keep myself hydrated and my stomach calm, but I still felt pretty ill. Trivia was a blast though! During trivia, I suddenly got uncontrollably shaky. For some reason, right after trivia, my blood pressure was really high (especially for being medicated at the time). Luckily, my BP calmed down later, but I was never able to eat anything else that night. More Zofran so I could get to sleep.
- Sunday morning, 9:30am, I still felt horribly ill and full. Still? Yes, still. This is bad. I’ve never had it last this long before. We’d finished that lunch at 1:30pm. I drank another Ensure with my pills to keep from getting sick from them. After Becky left, Dan and I needed to run some errands, so I managed to pull myself together and we went out. FINALLY, at about 3pm, after walking around for a few hours in the store, I realized I was hungry. My brain had been hungry for quite some time, but my stomach finally didn’t feel full anymore and was asking for food. Obviously, I was scared to death to give it real food, so we stopped at Jamba Juice and I got a medium smoothie. I also ate a pretty small, and gentle, dinner later that night. But I was left wondering, why in the world had I stayed feeling 100% overfull for more than 24 hours? Like, I could feel the food in my stomach. I eat Mexican food all the bloody time! I have no idea what was different about this time, but it was bad… VERY bad!
Thankfully, this happened very shortly before my last GI appointment. I was able to tell my GI all about it, in detail, and he poked and prodded at my abdomen again. He thinks that my symptoms and history are extremely indicative of gastroparesis… however, he also said that the symptoms can be indicative of gallbladder disease. Since gallbladder disease is statistically more common than gastroparesis, and the test is pretty straight forward, and the bad stuff from not treating gallbladder disease can be VERY bad, he wants to rule that out first. It sounds like, even if it is gallbladder disease, he might still want to test for gastroparesis to see if it’s a combination of the two.
So now I’m having a HIDA scan done on Thursday morning.
And, awkwardly, I’m kind of hoping for gallbladder disease. It can be dangerous if it doesn’t get treated, because your gallbladder can rupture… but since I’m getting the scan, we’ll be able to treat it. Plus, if it’s gallbladder disease, we can treat it and then I’ll actually feel better! Even if I have to have surgery to remove my gallbladder, after the surgery heals, I should feel much better.
For those that still think I’m crazy because you’re unfamiliar with gastroparesis, let me fill you in. Gastroparesis is a chronic condition with no cure and very few effective treatments. Essentially, it means that your stomach is paralyzed and does not properly digest foods nor does it properly pass them into the small intestine; this leads to food staying in your stomach for extended periods of time and fermenting, or to food passing into your small intestine while it is still too “raw” and causing cramping and problems in your intestine while it tries to figure out how to break it down. This condition can flare up and “get better,” but it never goes away. It’s permanent nerve damage. The main “treatment” is to limit the amount of fiber in our diet, cooking foods thoroughly, blending and otherwise “predigesting” foods (by breaking them up a lot) to make them easier for your stomach to handle, and supplementing your poor diet with vitamins and meal replacement drinks; you also have to eat much smaller meals. This is a spectrum condition, meaning some people have a very mild case and barely have to limit their diets and some people end up tube fed because their stomach has just flat out stopped and is completely useless now. It can be progressive, meaning you can start out mild and get significantly worse. Either way, it’s life long and it can cause tons of problems for the sufferers.
I’ve watched some amazing people struggle against gastroparesis, and they are fantastically strong and amazing people! It’s an awful illness and I am 100% on their sides in the fight for awareness and support and a cure
For now, I’m going to go get radioactive medication injected into me on Thursday. Maybe I’ll get some super powers out of the deal? I can always hope, right?!