Diagnosis Confirmed: I have Gastroparesis.

 

A few weeks ago I had my follow up appointment to go over the results of my Gastric Emptying Scintigraphy (Scan). The doctor was in a hurry- he had just come from surgery and squeezed me in- so we didn't go over the nitty gritty of the scan, but my stomach emptying was markedly delayed. I have Gastroparesis.

To be honest, I'm relieved it was abnormal because it means that there's something actually wrong with my body, and that it's not somehow "all in my head." When the Smartpill test didn't show any delay in my stomach (I suspect it's because the pill was so heavy that gravity helped it to digest faster) I got really worried that we wouldn't be able to find out what was wrong. I have also gotten worse in the past few months, and that too may have impacted the Smartpill vs. GES results.

These so called "invisible illnesses" can be a real pain. When you don't "look sick" people treat you like you aren't sick, even if you're dealing with debilitating symptoms. I've dealt with this my whole life with mental illness, a third of my life with autoimmune hypothyroidism, and now I'm dealing with it regarding these GI issues. Another complicating factor is that most people with Gastroparesis vomit multiple times a day, and while severe nausea is my biggest issue I don't actually vomit all that often unless I am sick. Of course I take a LOT of prescription anti-emetics, and a lifetime of emetephobia has helped me keep it down if at all possible. I also haven't lost any weight- and god knows why because I am not eating a whole lot these days.

Anyway, the doctor said that I am to continue taking 3 pills of Domperidone 4 times a day and I have another appointment in a couple weeks to see what my symptoms are like (since they've changed over the time period I've been seeing this doctor) so he can decide what kind of surgery to preform. Right now he is considering two options:

Pyloroplasty: This is a laparoscopic surgery where the valve that empties the stomach is cut and then sewed together in a more open fashion. This can help the stomach empty better and improve symptoms. There are some risks to the surgery and it isn’t a good choice for everyone. Potential problems include reflux, (including bile reflux which is difficult to treat with medications) persistence of gastroparesis symptoms, leaking from the surgery site, infection.

Enterra device: The Enterra device was FDA approved for compassionate use in 1999. It is a neurostimulator that is placed surgically. Although this does not make the stomach empty normally, it interferes with the message of nausea to the brain. This improves the overall quality of life.

(Descriptions from my doctor's website.)

I have heard that other doctors inject botox somewhere in the stomach and that helps too, but I forgot to ask my doctor about that. I will the next time I see him.

Anyway, the doctor is leaning towards the gastric pacemaker because the nausea is my biggest issue, and I am all for that. The biggest thing I am worried about is the cost. I've read online that the surgery costs about $70,000 and applying my insurance deductible and coverage rate that would mean I would be responsible for roughly $20,000. And that's if they cover the surgery at all or cover it according to the guidelines I was looking at. N has been really supportive of my fears, and says that if it makes me feel better, no cost is too great. I feel horribly guilty, but not being able to function normally has become a very serious issue. Also, if I was feeling better than it'd be possible for me to get a part time job (I'd love to do this when R starts school) and that would help us pay off the surgery in no time.

And of course there is always the risk that I get surgery and it still doesn't help. These procedures aren't perfect, and there are a lot of risks. And there's also the possibility that it could get worse, and then god only knows what we'd have to do. But I'm trying not to think about that and just get through this next month so we can start talking serious treatment options.

Right now I'm just at my wits end. I'm spending hours in the bathroom, am not going out in public much, am not eating much, and just feel awful in general. If I can't live a normal life can I just live a *relatively* normal life? Some days I feel like it's too much to ask.