Experimenting is over and we have called it. My old formula was the problem. Problem solved, right?
Not so quick. I emailed my new tube GI and asked her to order the new formula for me. She wrote back and asked me how much per day. I responded. And then radio silence. And as of Friday afternoon she has not put in the order. I emailed her, but didn’t get a response. Not that I expected to.
I have finished the sample case of the new formula. So my choices were to either buy more while I wait for the GI to put in the order, or go back to my old formula to wait it out. The answer to that one was simple.
The new formula is a Nestle product. And yes, I have lots of ideological issues with the fact that I am now on a formula made by Nestle. But I also like being a functional human, so I am buying it anyway.
Anyway, I purchased a case from their official store on Amazon. And they sent me the pediatric formula. The formulation is close, but not identical to the regular one, but what else could I do? I am using the pediatric formula.
I wrote in and complained, and I got a refund, but no way to get any reassurance that when I order a second case, I will get the adult formulation. It will probably take a couple of weeks to get my new formula sorted, so I can’t just wait it out and hope. So today, I hunt online for legitimate sources of my new formula.
If all else fails, I can always go back on my old formula. It is not ideal, but it will keep me fed in the interim.
This week I had the last of the GI appointments that Mary set up for me back in June. This one was the fan favorite. Every time someone in one of my Gastroparesis groups asks for the name of a GI in NYC, this guys name comes up. So I figured that I needed to check him out.
He absolutely lived up to his reputation. He is the doctor who knows the most about gastroparesis of any of the GIs I have seen. And he confirmed that I have been getting excellent care. He also suggested that since I have lost my most effective motility medication, I try a very low dose of Erythromycin. The naturopathic doctor that specializes in GI issues and has experience with gastroparesis had previously suggested the same drug. Apparently at that level it functions as a motility drug, not an antibiotic. But even so, my body could get used to it. So I am on a three weeks on, one week off schedule.
And because we weren’t already messing around enough, I recently upped my dose of cymbalta. The lower dose didn’t do much and my brain is still misreading motility as pain.
Let it not be said that chronic illness doesn’t leave you with a full plate; all in an effort to have what approaches a normal day.