There are a few things to catch folks up on, but I am not feeling great, so I will keep this short.
The big news is that my Xifaxan arrived from India. This is the antibiotic that should knock back the presumed Small Intestinal Bacterial Overgrowth (SIBO). With any luck, this will significantly reduce my pain, eliminate my need to constantly vent my G-tube and maybe even allow me to get off IV hydration.
I started my two-week course yesterday. Unfortunately, I am venting pieces of the pill out after closing off my G-tube for an hour so I don’t know how much of it I am absorbing. And it is particularly important that this antibiotic reach my small intestine. Which it cannot if it is venting directly out of my stomach.
I had an appointment with my nutritionist this morning and she is going to ask the Stanford pharmacist if I can grind up the pills and put them directly into my J tube. This would guarantee that the antibiotic reaches where it needs to go.
The pill is huge, and pills need to be ground really fine when going into the J tube, otherwise they can cause clogs. I am already fighting potential formula clogs forming in my J tube. I might need to pull out the big guns (the clog zapper) if I get the go ahead. I am also going to price an electric pill grinder.
In other news, things have been getting increasingly unclear with my insurance company. We have been fighting my insurance company over getting an out of network exception for the psychiatrist in the GI department at Stanford for months. I have out of network exceptions for the rest of my care team at Stanford, all based on the same recognition that there are no specialists in-network that can provide the very specific care that I need.
To refresh your memories, my brain misinterprets gut motility as pain. At the suggestion of one of my GIs in New York (so you know this goes back more than a year), I have been trying to transition from duloxetine to nortriptyline to manage the pain. They are both antidepressants that have also found to be effective at managing gut/brain issues.
My pain doctor is not comfortable managing the transition because of my history of depression. Regardless of the fact that I have medication resistant depression, she wants a psychiatrist to oversee the transition. I have seen 3 psychiatrists (2 in-network) that have been unwilling to manage the medication transition because it is above their pay grade.
There is a psychiatrist that is part of the GI department at Stanford that may be willing to oversee the transition. I have met with him, and he gaslit me and was kind of awful and unethical (he told me only halfway through the session that he was recording me–never asked permission and he called my therapist, once again, after telling me, but having never asked) but he is kind of the last option available.
No one at the insurance company seems to know what is going on anymore. At first we were able to get at least a first name of someone managing the appeal, but as of Monday, she was apparently no longer part of the process. I also received a letter denying the appeal, but when we called the insurance company, the appeal was apparently still open.
Yesterday, Damaris had a conference call with the folks who wrangle with insurance companies. They decided that they are going to file a complaint on my behalf to the state insurance control board. They are very confident in the strength of our case. Fingers crossed, that may get us the exceptions we need to get me to January. At which point, everything resets again.
David has been cleared to be weight-bearing, in his boot, to his comfort level. He is down to one crutch and has even managed to run a couple of errands on his own. He still tires kind of easily, and is dealing with some pain from using his foot, but he is definitely healing.
