Monday was a legal holiday so I called my GI’s office Tuesday morning. Apparently, my doctor is on vacation until January 15th. I spoke to his nurse practitioner who reiterated that if I have an active bleed, I have to go to the ER. When I tried to get any more out of her she said “what do you expect me to do over the phone?” So that was that.
I do have an appointment with my GI on January 18th, but until then I am just on blood patrol. I continue to have small bleeds, but since all the ER can do for me is monitor my hemoglobin levels, I am staying home unless I get a bleed that is big enough to change my hemoglobin levels.
I am also on a red-free diet. This is relevant because I used to drink red Gatorade and I still eat sugar candies and the occasional M&M. Even though David and I can both distinguish old blood from generic stomach detritus at this point, it can still be hard to distinguish fresh blood from dye. And it also removes all shadow of a doubt that if I see bright red, it is an active bleed. Ah the things I have learned.
I had my appointment with my nutritionist yesterday and as expected, it was a complete waste of time and money. She did clarify that the goal my doctor set of 100ml/hour was really high (this despite the fact that her initial projections had been at 100/ml-125 ml/hour). She added that most people max out at about 65 ml/hour. When I asked her about how that would impact my ultimate caloric intake, she demurred. Seriously. Same with when I asked her whether she knew why my doctor had overridden her suggestion that I go on the 1.5 calorie formula. I have an appointment with him on January 10th, so I will ask him then.
She did giver her stamp of approval for me moving up a single ml/hour every 3rd day. Which would have been today, but my jejunum is feeling worse rather than better, so I am staying put at 5.1 ml for a bit longer.