After months of waiting (Mary got this appointment for me before we moved to California, back in March), I finally got to see my new GI yesterday. She is a part of Stanford’s Motility Center, which means I am no longer seeing a lone specialist. This makes a significant difference for the patient experience.
The most important distinction, for me, is that she sees a disproportionate number of idiopathic patients. If you recall, for most patients with gastroparesis, it is a complication of diabetes. The vast majority of the research on gastroparesis is therefore on patients with diabetes. The data is pretty clear that the few interventions offered for gastroparesis don’t have any significant impact on idiopathic patients like me.
While there are no new interventions that my new doctor can offer, she was able to offer some more insight into the few available options. For example, Every one of the specialists I have seen has dismissed botoxing the pyloris muscle in my stomach. This is the muscle that releases food from your stomach into your small intestine.
Gastroparesis is measured by the time it takes the stomach to empty of food. Paralyzing the pyloris muscle can speed up the time it takes for the stomach to empty. However, the data shows that this intervention is primarily effective in patients with diabetes and has a pretty lousy success rate for patients with idiopathic gastroparesis. That combined with the severity of my issue (even if we cut my current transit time of 21.5 hours in half, I still have severe gastroparesis because the normal transit time of food in the stomach is 4 hours).
I was a little surprised when my new doctor suggested trying botox, but she said that she has seen improvement in symptoms of nausea in about 50% of her idiopathic patients. That was news to me.
Even better, she was able to set me up so I can just get the botox injection when I get my tube swapped out, which is something that we are now in the process of scheduling. Hopefully, it will happen soon (my new doctor marked the scheduling as urgent) because my tube is really ready to be swapped.
While I was there, we also did a little med tweaking because one of my nausea meds was no longer working as well as it had been.
My doctor is that is clear about how over-scheduled she is, so she has a nurse practitioner that she works with hand in hand. The NP came to my first appointment so that she is completely up to speed. I will alternate seeing the doctor and the NP every 3 months. My doctor also has a nurse on her team who handles things like formula orders. For the first time since getting sick, I feel like I am in stable, competent care.