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Hospital blues...blood back

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Ulcerative Colitis
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Posted 8/14/2015 9:46 PM (GMT 0)
I' m hoping to find some moral support! Having my first flare since diagnosis in July of last year. Had one glorious year of remission. Until 3 weeks ago. After oral steroids didn't help, was admitted 8 days ago. Iv steroids didn't help, so finally got in patient remicade last night.
They tapered my steroid today and of course blood returned. I'm down to 6-8 bm per day from 14 and after remicade the urgency and cramping is lighter as well as the amount I go But seeing blood really discourages me.
My crp is only 20 down from 120 and I was going to be discharged tomorrow. My plan was a 2nd opinion at cleveland clinic. But that could take weeks.
My hospial doctors seem to think blood is a need to keep me here. Do others have blood while getting treatment but able to go home??? How long can you wait for remicade to work while experiencing bloody mucousy stools? I still haven't been able to stay calm any time I see that awful red I admit I have that irrational --- oh god I'm dying moment.
Thanks in advance!
Posted 8/14/2015 10:30 PM (GMT 0)
people deal with blood a long time while trying to get into remission. months and months or longer. some do opt for more aggressive treatments sooner, but each case varies
Posted 8/14/2015 10:38 PM (GMT 0)
So sorry. It is hard to get used to. Give them time to help you. It's all very individual. Not a one size fits all.
Posted 8/14/2015 10:38 PM (GMT 0)
Thank you! I just needed to hear that from one person that isn't a doctor.
Posted 8/15/2015 12:24 PM (GMT 0)
Remicade often takes 2-3, or more infusions to make significant improvement.
Posted 8/15/2015 1:49 PM (GMT 0)
Good to know. My ibd specialist in the hospital ( a fellow) said 24 hours but the attending today said 2-3 infusions.
I appreciate each person taking time to respond! I feel far less alone in this now.
Posted 8/15/2015 9:02 PM (GMT 0)
It took three infusions before I stopped seeing blood and mucous after about a year of seeing it every single day
Posted 8/15/2015 9:11 PM (GMT 0)
Good to know! I'm being released tomorrow and today I went 9 hours without any activity ....that's huge considering I was going every 1-2 hours. And gasp! I had a real honest to goodness fart. It was followed by blood but I'll take any improvement.
Posted 8/16/2015 2:58 AM (GMT 0)
I saw improvement after my first infusion in the beginning of May and I only stopped seeing blood after my fourth infusion which was last Friday. But I kept feeling better and better as the time went on.
Posted 8/16/2015 9:08 AM (GMT 0)
My bleeding stopped within 48 hours of my first remicade infusion after 4 months of bleeding.

But then it came back....

Also, remember that the blood looks so much worse in the toilet. I know it is scary. You do need to monitor your red blood cell count and blood volume. If they are not at a needing a transfusion level than i would try not to worry too much.
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