Tuesday, I had my appointment with the traumatizing GI. Fortunately(?), I had seen my family on Sunday and I was still exhausted and my dysautonomia was in full swing. Not even my anxiety could get my blood pressure up much. My blood pressure was just 98/63 in the office. Think about what your blood pressure looks like when you are anxious! That was the best that I could do.
The traumatizing doctor’s demeanor was much more chill this time. But she still didn’t know what to do with me. Like my main GI, she is also supportive of the Stony Brook GI’s theory that my issue is a brain/gut issue and supports the anti-depressant approach. Still no word back from the Stony Brook doc though.
But basically, this GI’s field is enteral feeding. And since my body isn’t actively deteriorating from malnutrition, I am not her kind of patient. She made it clear that she is not the GI that I am looking for. In fact, she doesn’t believe the kind of comprehensive GI that I need exists. Apparently no one specializes in motility AND PEG tubes AND nutrition.
But, she is willing to be a peripheral part of my team and my tube doc. For me, the most important part of the appointment was that she referred me to her Registered Dietician, who does specialize in enteral feeding. even though I am still stuck, she can at least help me with longer term goals, assuming that I can ever get my pump speed up.
Speaking of which, I think the small intestinal bacterial overgrowth (SIBO) is back. The pain in slowly increasing again. I had almost a week of stability after I went off the xifaxan. But since then, it has been a steady decline.
We picked up a SIBO test from my GI’s office while we were in Manhattan on Tuesday. However, I cannot take the test until I have been off the antibiotics for 2 weeks. So I am looking at Saturday at the earliest. Unfortunately, David needs to then bring the completed test back to Manhattan for analysis. We are leaving for the Berkshires on Monday, so it will be a week before David can bring it back anyway.
I am of two minds on the test. Part of me wants to take it right away just to get it done with. But I have to be fasting to take it, which means losing about 12 hours of nutrition. And no pain meds the following morning or during the 3 hour testing period. Regardless of when I take it, it won’t be a pleasant experience. So, it’s not like I want to rush in.
I have been eating less because of returning pain, so I finally gave in and have started supplementing my nutrition by drinking formula again. I was incredibly resistant to doing so, and started sobbing just at the thought of it. My therapist suspects that the sobbing is residual trauma coming out. But I have been pushing through and I can now get a glass of formula with just a few tears, so my efforts to just push through the tears seems to be working.
The original idea had been to use the oral formula to increase my caloric intake. Because the returning pain means that I am eating and drinking less, the formula is just replacing the 100 or so calories that I was ingesting already. But it is a start. And my hope is to slowly increase the amount of formula that I can get in orally. Pain-willing, of course.
The plans for the Berkshires are continuing afoot. Yesterday, the cat sitter came by to check her keys (it has been over a year since we used her last) and to get the updated routine. We are continuing to add to packing lists and there is now a pre-departure to-do list.
Despite everything that needs to get done, I am doing my very best to take every opportunity to rest. Every little thing just takes so much energy from me. As always, there is a lot that David can do for me, but when it comes to my health (including packing up my medical supplies) he still needs my brain to help. And those little consultations seem to add up and exhaust me. But we are doing our very best to have me in the best shape possible for our Berskhires adventure.