Posted 11/6/2019 12:55 AM (GMT 0)
I have Crohn’s and Gastroparesis (among other health problems). I’m 45, 5’4, and 82 pounds. Three years ago, I was around 115. Most of this weight loss was in the past year, when the Gastroparesis got bad. I mostly live off liquid nutritional drinks, and occasionally my mom has a mobile IV place come by to give me a bag of fluids. My body does a poor job of absorbing nutrients AND water it seems. When I saw my GI last summer, she wanted to have me hospitalized with a feeding tube because she thinks I’m anorexic (she’s also an idiot). At the time, she told me to push through the pain and nausea and eat anyway. She also said not worry about my crohn’s, that it was “perfect”. Now that I’ve had a fistula breakthrough, it’s pretty obvious that my crohn’s is far from perfect, and probably contributing to my weight loss. I absolutely do not want a feeding tube, and with my history of small bowel obstructions, it just seems like a really bad idea. My fluids nurse told me her mom had crohn’s, and that she lived exclusively on TPN for something like 15 years. I wouldn’t need to be TPN exclusive, I just need a way to get regular fluids and a few extra calories so that I can gain some weight. My blood pressure is always super low before I get a bag of fluids, and returns to normal afterwards. If I could afford it (and if the nurse doesn’t run out of places to stick the IV), I’d get a bag every week. At what point does a GI consider ordering TPN for a patient, or at least regular fluids? I’d be totally okay with dealing with a PICC line for a couple of months, so long as it was at home and not a hospital.Thank you!