You can set your clock by it

[chrisnsteph1022]

Every morning at 3am, without fail for at least a week now, I wake up and go to the toilet. Usually it's just massive amounts of blood and no D. Then when I get up at 5, more blood and a little D. The rest of the day is usually just D. But if I go more than 3-4 hours without going, then the next time will be bloody. I really hate waking up in the middle of the night to pass blood. I don't feel any pain that I remember. I just want to sleep through the night.

At what point should I be concerned about blood loss? I'm tired all the time, but not light-headed or dizzy. I get headaches every day, but that seemed to coincide with starting entocort a few days ago. I've had a scope done (severe activity throughout colon), but no other tests, including any blood tests. Should I ask for something to be tested?

 

[Rebecca85]

Definately! You need a FBC plus ferritin and b vitamins testing at least. You might need supplements to help your body cope with the blood loss, or you may need transfusions. Just out of interest, why are you taking entocort if you have inflammation in your colon- I though entocort was for the terminal ileum?

 

[chrisnsteph1022]

That's a very good question and one I'll be asking my doctor. I may or may not have small bowel involvement. But we KNOW it's all through my large bowel. Maybe because I refused to take pred and he thought it may work enough to give it a shot? I tried to hold out for the Cimzia to kick in (it's being shipped Tuesday!) but it got bad enough that I called on Monday and asked for something (besides pred). It seems to have only gotten worse since starting the Entocort (not to mention the headaches).

 

[Rossy]

Entocort works on the ascending colon/cecum as well as the TI. I thought it was a great steroid.
But if you're losing that amount of blood you really need to get this seen before you become very ill, don't see how you can carry on like that, you need to see a doctor.