8:22pm April 11, 2013

Invisible illness 30 day challenge #2

2. I was diagnosed with it in the year:

I was first diagnosed in the year 2012 but was confirmed to have severe gastroparesis through diagnostic testing in the year 2013. So they knew I had it but they had to do a foolproof test in order to begin treatment.

The reason I was diagnosed in 2012 was I was in the hospital for pneumonia but had just happened to stop eating anything but broth and small amounts of grits. Like half a serving or less. They didn’t believe me until I didn’t eat anything in the hospital for a few weeks and was still constantly nauseated and not hungry. I told them they couldn’t send me home until they got me eating. So they spent weeks and weeks trying nausea meds, antibiotics that stimulate stomach movement, and all kinds of things. Including things I’ve had allergic reactions to. They had to try every damn thing they could, and they were talking about a feeding tube.

What they had me on at the point they were talking feeding tubes was Reglan, Phenergan, Zofran, Ativan, and Benadryl. Ativan and Benadryl control nausea even though most people aren’t are of it. They were giving me as much of everything as they could. And still I couldn’t eat enough without severe nausea that most people would have been vomiting. As a former emetophobe I have a lot of control over nausea that most people don’t, but I insisted that living with severe nausea is not going to cut it for me, for one thing it meant never sleeping on my bipap because vomiting would be fatal.

So then they brought in Marinol. I’d heard of it before but never in a million years thought I might need it. My DPA and I were both very skeptical but we decided to give it a try. It’s derived from marijuana, and I react terribly to marijuana. But it’s only one out of the many active ingredients in marijuana, so apparently it didn’t have the panicky effect I expected it would. And it instantly made it easier for me to eat, and brought my nausea down enough I could keep everything down without effort. So then I was able to go home from the hospital on a liquid diet (Ensure) and a new diagnosis of severe gastroparesis.

In early 2013, they wanted to make sure the problem was really gastroparesis so they could begin to think about treatments or sending me to a specialist. The test involves swallowing radioactive eggs. They trace them through your system to see how fast your stomach empties. Gastroparesis means your stomach is partially paralyzed and empties slowly. They insisted I had to keep down the eggs for four hours of testing and that the testing would be moot if I threw up. And they told me nobody throws up ever. But it turned out they were lying to encourage me. I ate the eggs but couldn’t eat the bread. I used every trick in the book to keep those eggs down. I started feeling very faint and the air got blotchy and eventually I started throwing up. It turned out not only did they already have enough data to show I had severe gastroparesis, but the time during the study that you throw up, determines something about how they measure the results of the test.

Then the problem was I couldn’t keep down my nausea meds afterwards. So I ended up in the hospital with a PICC line getting all my meds through that while I struggled to get the nausea back under control. Once I start throwing up it takes a lot of medical intervention to get the nausea back under control enough that I could eat I still think this is a really cruel disease for someone with even a little emetophobia left in them. So it took almost a week for me to get back to drinking Boost and then Ensure. But I began to be able to drink less and less because of that setback among other things. Which is one reason why as I type this, I’m in the hospital after getting a GJ (gastrojejunostomy) tube put in and eating entirely through that.