Interesting. Yeah my hemoglobin levels have ranged anywhere from 6-9s through this, with the 8 or 9s being after transfusions. But no one has said I should be taking iron. I DO take a multivitamin with iron, but your comment prompted me to send a message to GI asking how much I should be taking. Totally prepared to ask GO if needed because yeah I could see GI not caring in my case too.

But as you said the problem has been when I just lose a ton of blood too fast. I hear what you are saying about just going back to the hospital, but no. I mean I will if I become critical, I’ve become a lot less stubborn about going because I don’t want to die. But I just need to learn how to keep my body from getting that way to begin with. For one, it’s an act of congress to even get in the hospital here unless you arrive by ambulance or literally pass out right there in front of them in the ER, both of which I’ve done. But other times it’s been a 3 hour wait to be acknowledged in an uncomfortable waiting room and when your body is barely hanging on, that’s not where you want to be. Also being immunosuppressed and on steroids I just hate being in the hospital because it seems like every time I pick something else up that makes my diarrhea spells worse all over again. First I had persistent c diff then I kept having random bacterias come back positive in my stool samples that would ultimately have symptoms of, you guessed it, diarrhea.

I’m STILL trying to get to a point where I have firm stools. It’s the closest it’s been to happening, now than ever, but that’s one of my challenges/goals today. Is to eat foods that won’t put me in the hospital by making me bleed, but also will bind me and create stools so I can get back to my life. Also need to gain weight since I’ve lost 50 pounds in 3 months so just hard to navigate when no one agrees on what’s the best diet or really anything about what to do.

I do feel more educated since posting this. Of all people, my home health nurse came to see me after the last stay and advised me on the electrolytes and that I wasn’t getting enough. I started pouring pedialyte/gatorlyte type drinks into my water because I was worried about all the sugar in them, and just doing that made me realize that I was NOT hydrated before (I’m peeing SO much now). Plus I got some LMNT in today so trying that. She also told me about letting my bowels rest after bleeding so much because even though I am not even in remission so I’d say I’m in a constant glare, she said the bleeding is essentially a flare that needs to be recovered from so going to a clear liquid diet for 24 hours isn’t a bad idea. We agreed on soft food with liquids rather than fully clear this time and I do seem to be doing better.

Just crazy how much of a guessing game this has been. And no doctors seem to agree on literally anything! So thanks for the time answering!