David and I both expected some degree of medical blowback after our move, but we both hoped that it would be temporary. Two months later, I am sorry to report that it doesn’t seem to be.
Where I am – At this point I am subsisting almost entirely on sole-source nutrition formula, and not very much of that. I also drink 24oz. of high sodium electrolytes to keep my blood pressure up. Turns out starving oneself can really do a number on blood pressure.
Previously, my NYC GI, Dr. Goldstein and I had discussed the future possibilities of an endoscopic injection of botox that would freeze the valve between my stomach and my small intestine in an open position. This is not a fix that has shown much benefit for people with idiopathic Gastroparesis (GP). The next step after that would be a G-POEM, which would cut a muscle in my stomach that would more permanently keep the valve open.
Today, David and I met with Dr. Goldstein to discuss where to go from here. Given where I am and the fact that the Smart Pill test results indicated that the motility in my small intestine is also slow, he doesn’t feel like a G-POEM is a good match for me.
Instead, we discussed different ways to get more nutrition in to me. I have been subsisting on a starvation diet for a year and a half and my body is simply out of reserves. After discussing the available options, we agreed that a Gastro-Jejunal Tube (G-J tube) inserted endoscopically, makes the most sense for me. A J-G tube will allow formula to go directly into my small intestine, bypassing my stomach entirely. It also gives me a valve to vent my stomach.
My doctor doesn’t do the procedure anymore, but he has a colleague who does and he is going to discuss my case with him. So we don’t have dates or anything yet. And I already have a meeting with my nutritionist to discuss details on how to titrate up my formula intake. If you ramp it up too fast, you end up with cat food on the ceiling*!
It is our collective hope that allowing my body access to the nutrition it needs will allow me to lead a fuller life. However, and this is a Big Thing, none of this does anything for the fatigue, nausea and pain that comes with GP. That will continue to be a very limiting factor. But hopefully, more on that in another post.
*That was a joke with a very limited pool of people who will get it. Back in the day, we had to tube feed Artemis for a short period. We had no clue what we were doing and we went too fast and the food shot right up and hit the ceiling.
thanks for this report…wishing all the best with the next good idea for aide in this process.
It does sound hopeful too, that knowing and caring Medical team are doing there best taking it step by step. …each hopefully bringing you the good nutrition and help to eradicate the causes and symptoms of this debilitating disease.
We think of you and David often..still with “live sense of being together in Lake Placid.
We have been lucky with lots of rain yet now a return to some high heat…but gratitude for no wildfires to day… and seasonal chances for less heat still exist. Garden still thriving with Zukes, Okra, some tomatoes, peppers, basil, figs…yet here to…the change of season will be welcome as the citrus on the trees…are green yet growing…the yellow and orange color won’t happen until colder weather…
Lots of Love and Light Always,
terri and Carl
Praying for you, and for wisdom for your medical providers! I hope the tube gives you some much-needed nutrition. 💕
It’s great to read the current thinking. More nutrients should help a bit with energy levels!