Thursday, February 14, 2013

Gastroparesis

Those of you who are (un)lucky enough to see my Facebook statuses know that I've got a new and exciting complication going on. The reason I'm somewhat displeased with this new problem is that I can no longer eat. (Incidentally, saying "No thanks, I can't eat," in turning down an invitation to go out for brunch will get you really weird looks).

Those of you who know me in person know that I am already thin. Those of you with access to my medical records (I'm looking at you, Homeland Security) know that I'm medically underweight. I've been trying to figure out why I drop weight so fast, and why it makes me so nauseous to eat. Now I know: I have a condition called gastroparesis.

"What the **** is Gastroparesis?" I hear you saying. Gastroparesis literally means paralyzed stomach. It can occur for different reasons, but it is thought that in lupus patients the immune system attacks the nerve that controls the stomach muscles. This prevents the stomach from working on that "digestion" thing. Instead, food and liquid just sit in the stomach, not moving on to the intestines. And so the stomach gets full very easily. If you try to add any more food to it, well...what goes down must come up, if you catch my meaning. Not so fun. Theoretically, liquid should empty the stomach just by gravity, but in my case that doesn't seem to happen very well.

How long will this last? I haven't the faintest idea. It, like every other symptom in lupus, could go away tomorrow or could last for the rest of my life. And if that doesn't sound fun, remember that the FDA-approved drug for gastroparesis is, basically, a poison that damages other nerves. I am under orders to get another drug filled in Canada, but have been having trouble doing so. (If any of you know a Canadian pharmacy that sells Domperidone, please let me know). In the meantime I am basically living on a liquid diet. Contrary to popular belief, it is possible to get really sick of hot chocolate. Remember that I am also gluten-intolerant; this does not leave a whole lot of options, dietarily.

So there you have it: the latest reason my life is so fun and exciting.  Heaven help the next person who says that she wants to be "thin like Sam." Trust me on this one, folks....no, no you don't.

P.s. Ok, I admit it. I called the doctor who thought I was anorexic, gave him the diagnosis, and then actually said, "so there!" But he totally deserved it, so I don't feel even a smidge of guilt.

Update: the previously mentioned doctor still thinks I am anorexic, in defiance of all the evidence found by the specialists. I am proud of myself for not using a baseball bat to try to change his mind.

Update 3 March 2014: I asked my rheumatologist at Hopkins about the cause of gastroparesis in lupus patients. Apparently it is caused by our bat-**** crazy immune systems' damaging the nerve that controls the stomach. It is a form of dysautonomia, which basically means that one or more of the body's "automatic" functions is going bonkers. Other forms of dysautonmia include wacked out blood pressure or heartbeat, etc. Things that we don't think about, but which our body is supposed to do all the time.

11 comments:

  1. If that's what I had (and clearly not as bad as you) and it does sound like it, mine went into remission after about six months. Praying, always, and hoping you feel much better quickly.

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  2. It has been a problem for a lot longer than six months. I just had to get through the idiots who thought I was anorexic to get a real diagnosis.

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  3. Although it does come and go. Some months are worse than others.

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  4. Sam, I am a newcomer to your blog. I have had gastroparesis, celiac, Crohns, and small intestinal pseudo obstruction for 5 years. Long before I was diagnosed with lupus/RA/who the hell knows. I know how much it sucks. I bought my domperidone from New Zealand (sp). I didn't find it to be helpful, but I really hope it is for you! Whatever you do, stay away from reglan! It has a host of really nasty side effects. You can try and get compassionate release for cisapride. Temple university in Philly is one of the leading places for gastric pacemakers. If you have any other questions or need someone to talk to that knows what you're going through post on her and I will send you my email privately.

    M

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  5. I'm being treated at Hopkins, and my doctor hates reglan. So I doubt I'll have to try that one. I just found a possible source for domperidone, and I really hope it helps. The fact that my stomach is inflamed on top of everything else isn't helping things. I hate lupus...

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  6. So sorry you are having to deal with this on top of everything else! Praying for relief soon & getting back to "our normal". Positive vibes your way.

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  7. Wow!!! Just when I think everything that can go wrong with a body already has with yours--something else goes wrong. I DO NOT want to be thin like Sam. However, I do wish to remain defiantly snarky in the face of extreme trial like Sam. Keep throwing those ****'s around.

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    1. I like to think of myself as the ultimate living biology lesson. Want to know what something in the body does? Just find out what mine isn't doing.

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  8. Hi Sam! I was just diagnosed with gastroparesis as well. I also have Lupus and several other fun issues that come along with it. How are you doing with the gastroparesis? I was unable to tolerate Reglan. My GI had said the next step would be a pacemaker on my stomach. What treatment are you using to control the issue?

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    1. Reglan is the aforementioned potential neurotoxin. I use Motilium, which I buy from Canada. My GI doctor also talked about doing a botux injection into my stomach to allow the muscles to relax and the stomach to empty. He said he doesn't generally do pacemakers except for in diabetic patients.

      My gastroparesis is still here, but it eased up for long enough that I was able to put some weight on, so at least I'm back in the healthy range. It's always worse in the summertime, when the sunlight flares my lupus, which exacerbates my gastroparesis.

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