My gastroparesis story (Gastroparesis Awareness Month is August)
I don't usually do awareness months but here goes. Apologies to those who know this already
Gastroparesis is a motility disorder, meaning it affects the speed of your digestive system. It means paralyzed stomach. Your stomach doesn't empty quickly enough. Food and bile can sit around for days. You get cramps, bloating, nausea, vomiting, and you feel full too soon.
You can also get reflux because things back up and come up your esophagus. In my case it goes into my lungs causing choking and pneumonia.
It has many causes. Mine is probably related too the autonomic neuropathy and neuromuscular diseases that run in my family. In particular it's often caused by damage to the vagus nerve.
I've had motility disorders all my life. I've always had severe constipation, which got worse over time causing blockages bad enough to put me in the hospital. And when they tested me for reflux, they found that my esophagus moves too slow.
I don't know when I got it. But as long as ten years ago I remember throwing up food that should have been long gone.
Over the years, I became more and more nauseated. Eventually I was nauseated all the time. The nausea grew worse and worse until I could not keep meds down. I was admitted to the hospital to receive my epilepsy meds by IV. They tried to discharge me the next morning, which backfired when I threw up the huge meal of fish they were forcing me to eat. After a talk with Patient Relations, they decided to actually keep me until I was better. They started me on Zofran and Reglan and kept me all week. Zofran treats nausea. Reglan also treats nausea, and makes your stomach move faster.
They tried to tell me that I just had a stomach bug. But I think we all knew that wasn't true. If it was just a bug, they wouldn't have given me a permanent prescription for two nausea meds. But nobody pursued a diagnosis. They just had me rely on nausea meds before each meal. And put me on Reglan far longer than the recommended time, without ever explaining to me why. Reglan is one of the only drugs that treats gastroparesis directly.
But on the maximum dose of Reglan, I experienced severe akathisia. This is where you get a restless sensation and uncontrollable body movement. I basically thrash around. When it's less severe, it makes me feel like I need to stretch, but stretching doesn't relieve the sensation. I had to cut my dose in half.
There is another much safer drug that does the same thing as Reglan but doesn't cause as severe motor side effects. It's called domperidone. The FDA has found some lame excuse not to approve it, so it's hard to get in the USA. It could do a lot for a condition that has so few real treatments. But that's not the FDA's priority.
For years, my symptoms got slowly worse. I had to get a set of rules written up for how to translate my medication list into IV form, in case I was incapable of keeping my meds down. Sometimes I'd have periods when I couldn't eat anything more substantial than broth.
I always felt healthier after I'd been eating nothing but broth for a week or so. I often wondered why. I came up with some sort of explanation about how maybe human beings are built to be used to lean periods. But the real reason was that if I went on a clear liquid diet, my stomach finally had time to clear out.
If my stomach didn't have time to clear out, things got ugly. I could get so bloated that my stomach area (up near my chest) became hard as a rock and much bigger than usual. When I threw up, I often found food from days ago in there. I didn't understand that either, but I figured maybe my ideas about how long digestion ought to take were completely wrong. I never thought to put everything together into one big picture.
Doctors always blamed my worse periods on stomach bugs. But they didn't act like stomach bugs. And a year and a half ago, I had a period of three months where I ate nothing but oatmeal and broth. I went to doctors, but got the same old explanations. Except any time I had a period like this, my symptoms would get permanently worse.
For years, I'd been having situations where I woke up choking. It was assumed to be reflux, but my tests for reflux kept coming up different than would be expected for the severity of the problem. Soon I was no longer able to choke out the bile, and woke up inhaling it. This interacted badly with my bronchiectasis, giving me lung infections and aspiration pneumonia. I developed a standing order with my doctors so the minute I aspirated, I could get antibiotics.
A year ago, I became truly unable to eat anything beyond broth and small amounts of grits. I told my doctor something was very wrong, and begged him to figure it out. He said I never complain even when I ought to, so he would take me seriously. He ordered an ultrasound.
But soon I aspirated again. And I got very sick very fast. My friend burst into tears when she saw me on video, and told me to go to the hospital. My pneumonia had gotten much worse and they admitted me easily. I began to go in and out of severe delirium. But I distinctly remember telling them that I refused to go home until they figured out why I couldn't eat. Because I'm fat, they wouldn't believe how little I was eating until they saw it for themselves. At which point they started freaking out about me burning muscle, and tried to find out what was going on.
My DPA figured out that I had gastroparesis a couple days before the doctors did. They began trying me on a wide variety of nausea medications and antibiotics that would speed up my stomach. But nothing seemed to be working. They started talking about a feeding tube.
But first they were going to try every nausea medication they had. They tried a combination of Phenergan, Zofran, and Reglan. It helped a little but not enough. Ativan and Benadryl. A little more but not enough. Then they asked me about Marinol. I was skeptical, but it worked like magic and I was finally able to go home after five weeks in the hospital. The catch was that the only food I could keep down was Ensure.
A few months later they did a gastric emptying study on me to confirm my diagnosis. I ate radioactive eggs and they took pictures to see how long they started in my stomach. My stomach turned out to empty very slowly... and despite all my efforts I became so violently ill I landed in the hospital.
During this time, I'd begun aspirating more than once a week. But I was having trouble convincing some doctors how serious it was. So my pulmonologist did a cat scan of my lungs to prove I had aspiration pneumonia. Days later I was in the hospital again.
I also could no longer eat more than one small container of Boost a day. Everyone knew I needed a feeding tube to survive. But suddenly everyone was trying to talk me out of it. I needed a GJ tube. One part, the j tube, goes into your intestines. The other, the g tube, goes to your stomach. The j tube would be for food and meds. The g tube would let me drain the bile that gave me pneumonia all the time. They even acknowledged I would die without the tube, but continued to pressure me to do exactly that, die rather than have a feeding tube. We think they were prejudiced because of my developmental disabilities.
My DPA wrote what was happening on tumblr. People started calling the hospital saying they needed to allow me to get the tube. According to a nurse, everyone from residents to administrators read the blog posts and got scared. I got the tube but the fight was exhausting. I had a lot of painful complications too.
But I love my tube. I rarely aspirate anymore. Before it was once a week or more. Now it's been once in the five months since I got my tube. I am way less nauseated and can drain my stomach rather than throw up. I wear a drainage bag on my g tube to drain out the bile. A bottle of tan liquid food goes into my j tube all day and night. I never get hungry and never feel full. I am finally maintaining a stable weight. I am going to a motility clinic soon to see someone who specializes in gastroparesis to see what else can be done.
Gastroparesis is a really unpleasant disease. But what I see too often is people whose gastroparesis is less severe than mine overall, but who are not getting adequate treatment. They may get one or two nausea meds and the doctor gives up because "nausea meds don't work". I needed SIX to be able to stay out of the hospital. But they're barely being given any. And often people don't know it's possible to fight doctors who don't want to treat you, or how to fight effectively. And many doctors don't know enough about gastroparesis. Mine, before he did more research, tried to tell me most gastroparesis patients just stop eating but never get nauseated like me. Not true, for most of us nausea is one of the worst symptoms!
Gastroparesis can kill. I refer to my health as precarious instead of terminal. If I'm lucky I will live a long time. But if I aspirate tonight, and things go badly for me, I could be dead within the week. Gastroparesis has forced me to confront my own mortality. Every time I wake up with a lung full of bile, I know things could be over for me really soon.
I know it's a cliché, but it's forced me to figure out what really matters. To set aside self-pity. I don't have the time or energy to waste feeling sorry for myself anymore.
Which means I'm telling it like it is for me. I'm not writing about how terrible each symptom is. They're unpleasant. Especially for a former emetophobe. But I've learned to deal with unpleasant. After the things I've been through I am just glad for every day I am still here. I have bad days like every chronically ill person, I piss and moan a bit, but then it's done, because I've learned not to feel bad about feeling bad. I'll live through it -- or not. Either way it'll be ok.
If you've made it this far, thanks! Go to g-pact.org for more information on gastroparesis.
