I think an octopus must have moved into our attic because the shoes keep dropping.
When last heard from, things were looking up. I had gone a few nights without venting overnight and we thought the worst was over. That lasted four days.
Now, nothing is staying in my stomach, not even fluids. Everything is venting out. Last night I drank a cup of peppermint tea. 10-15 minutes after I finished the tea, I closed off my vent bag for a miserable hour and a half after taking my meds. It felt like I was wearing a very tight corset, only inside my body. When I finally unclipped, David and I watched, eyes agog, as my vent bag rapidly filled with the tea.
Obviously, hydration is a concern. I get most of my hydration from my enteral feed, but that isn’t quite enough. Sunday night I did my TPN, so that was an extra liter of fluids that carried me through Monday. Yesterday, we went to my PCP’s office and got two liters of fluids infused. Tomorrow, I am getting bloodwork done away from TPN to assess my hydration level and we will go from there.
My GI has ordered a gastric emptying study for me to be done at Stanford. This is different than the Smart Pill test I had done back in June of 2022 that led to my official diagnosis. This will involve me eating a standardized meal of two mildly radioactive eggs and two pieces of toast. Then they check over the course of 4 hours to see what percentage of the radioactive eggs have left the stomach. She didn’t share her rationale for ordering the study nor do we know how long it will take to get me on the schedule. But thanks to Damaris and Drew, we think we may finally have a handle on the insurance hurdles we are likely to face.
However, and this is a huge however, that all depends on the ACA not being dismantled and us being able to retain our health insurance. Things are really scary out there right now.
David and I share a theory that the issue isn’t really my stomach as much as my small intestines. That the reason that the liquid isn’t moving through my gut is because my small intestines are also paralyzed. This theory is backed up by a barium test I took before my diagnosis back in 2022 that showed that thick liquids moved through my stomach just fine. But backed up once it hit my small intestines. And that barium was still in my guts two weeks later when I went for a CT scan to rule other things out.
But as the head of enteral feeding at NYU/Langone told us, nobody studies the small intestines because they are boring. And there is nothing that can be done for them. Thus it makes perfect sense that that would be the organ than would truly conk out on me.
Gratefully, I continue to be able to tolerate my enteral feeding, and I am now up to 50mls/hour, which it turns out, is my full feed on this formula. The 54mls/hour was established when I was on a different formula in larger containers.
The DME that send me my TPN and supplies is now supplying my enteral supplies too. I switched, in large part because they had me on an obsolete pump and were therefore sending 500 ml rather than 1liter bags which were no longer available. My new supplier has me on a new pump, but now they can’t get bags for the pump. They sent me 15 bags and told me to wash them out and use them a second time. David and I were unsure as to how sanitary that would be, so I turned to my tubie network and now we have 60 bags enroute to us. But, it is a nationwide issue, so I find myself hoping that whatever is causing the backlog will be resolved soon.
I don’t know where the bags are actually made, but they are assembled in Costa Rica. I now find myself monitoring the deteriorating relationship between the US and almost every other nation wondering what it will mean vis a vie my medical supplies.
