Posted 1/15/2013 4:02 AM (GMT 0)
Lucky and Sarah,
How did you do this????? Sarah, you are able to eat so much. I still have the drain tube and am on liquids, have to even dilute down high fat protein drinks and milk bunges up. VERY malnourished. FINALLY got a doc to offer TPN As inpatient then be sent home with port put who knows where and be on TPN at home. Did not get answer to question of how long this doc believes is wait time between surgeries. Other one said 6 months and to USE the gut what I could.
THis Nov. Stoma emergency redo is so recessed on one side that I have very serious skin breakdown. I need help fast. Need to know whether I should even go to GI tomorrow 40 miles away, may just call and ask as the ride is so long and with this drain tube, the less josstling around the better. or wonder whether to try and move up the new colorectal surgeon appt as in get put on their wait list. This one is the only one who seems to get the severe issues I am in.
The bills from all these hotel stays and social workers and night aides and day aides and ambulace rides is going to take me if the starvation does not. Am so terrified. Well better get to sleep as I have to call early in the a.m whether to skip the GI consult. It is not at the hospital that offered the TPN the end of Jan. It was just input on how to survive til surgery. I am so chase tailing and not knowing what to do.
Lucky, were you ever at home on TPN or did they take the port out?
Sarah what did they finally decide was your issue?
Rosemary