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how much blood is too much?

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Ulcerative Colitis
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Posted 9/25/2007 10:04 AM (GMT -6)
hi folks! So here is where I am currently- 8-10 bm's a day, mostly all blood & mucous, very little actual stool. I am on 40 mgs/ pred, started at 60 & have been tapering 10mgs per week. The bleeding started in earnest at around 50mgs pred. I have a remicade infusion scheduled for Oct. 15, my 4th, & we are going to double the dose as it has stopped working. I have a surgery consult scheduled for next week(!!!), as that will be my next step if the remi doesn't start kicking butt again. My deal is this- I'm bleeding a lot, bright red blood just dripping into the toliet. I'm taking iron supplements to avoid anemia again. I think I can hold out 'til the 15th, 'til the infusion. For those of you who've been through similar situations, how long were you able to hold out while bleeding? The docs do not want me to go back up on the pred becasue I've already had a serious infection once which landed me in the hospital for a week, due to the immune suppressants. I figure that after I talk with the surgeon, it's 2 weeks 'til the remicade infusion. Then, you usually know if that's going to help pretty quickly. So I'm going to give it another 2 weeks or so post infusion, & if nothing changes I'll be heading to surgery sometime in November. I just don't know if the bleeding is anything to really worry about- I know it always looks like it's more than it is, so....
Posted 9/25/2007 10:25 AM (GMT -6)
I was bleeding a ton back in February...had 20-25 BMs a day..mostly mucous and blood, some just blood. I was sleeping (or trying to) on the bathroom floor. I held out probably 4-5 weeks total with some blood...but only 2-3 wks of severe D and lots of bleeding. I never became anemic though, even though I was losing lots of blood. I was going to multiple doctors during this time and having tests done to get diagnosed. I wasn't on any meds yet at the time. Looking back, it was probably stupid of me not to go to the hospital back then, but I didn't think I was covered under my dad's health insurance anymore, so that's why I didn't go. I live alone, too, so I was scared I would die or pass out from the pain. Have you asked your doctor about it? I don't really know what to tell you because I don't want you to start feeling any worse than you already do...you should probably ask your doctor and see what he/she thinks. Are you able to eat/drink enough to stay hydrated? Keep us posted.
Posted 9/25/2007 10:27 AM (GMT -6)
Any changes in bleeding or frequency, when reducing prednisone, should be communicated with your GI. I suggest you call him or her.

Sue
Posted 9/25/2007 10:54 AM (GMT -6)
I know, I know.... I do have to call my GI. I'll try this afternoon- maybe we can up the pred for a week or so. I just hate to always call & call.... I'm so tired of this whole thing!

Posted 9/25/2007 11:26 AM (GMT -6)
I was doing that too, tons of bleeding, it got so bad i was throwing up it hurt so bad..ended up in the hospital a week very dehydrated. I was worried about the amount of blood loss but it never was an issue. I was sure i was going to bleed to death. Anyway after a week in the hospital being pumped full of steroids and fluids I was somewhat better. That was a month ago, i still have diareah but very minimul bleeding.
Posted 9/25/2007 2:44 PM (GMT -6)
I'm waiting for my GI to call right now- I'm not too concerned over the amount of blood I'm losing, per se, but just how long I can continue to bleed without major problems. Unreal.... If I have to go into the hospital again, I'm only going for surgery. I'm going to see if we can move up the remicade infusion to either this week or next, & hopefully that'll help with the bleeding. Well I just talked with my GI- he wants me back on the 60mgs pred until the infusion, which we're not moving up. Because we're going to do a double dose of Remicade, he's leery of moving it up. I don't blame him, I'm  leery of Remicade myself! And again, he talked about surgery... I've had a lot of time to think about that, & I am so ready for it. I'm actually looking forward to the surgical consult.

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