Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 Can they give her high doses of steroids? That stops the inflammation, which then stops the bleeding. They need a quick temporary solution, and unfortunately using something like steroids and starting in on some meds, like Lialda, would be a start. Steroids work really fast, but all other IBD drugs take 4-6 weeks. Subject: bleeding to deathTo: BTVC-SCD Date: Monday, August 2, 2010, 5:32 PM just got an update on friends daughter again - they basically told him just now she's going to bleed to deah if they wait or at any time the stool could back up into her and poison her -I mean they are up against a wall and even after they remove the colon it leaves a ton of problems still - how do you stop bleeding??? what do people do in this case - i mean scd can cure people but has it saved people that bad?????? eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 her dad said her face is swollen from prednisone so i'm guessing she's currently on it - she was off as it didn't seem to work a while back- i'll call and ask though -thanks - she's on a drug too ,not helping - they were told it was a last ditch effort - worked for a smidge and stopped so now they're faced with surgery to remove the colon and then many problems afterwards they were warned thanks Eileen > > > Subject: bleeding to death > To: BTVC-SCD > Date: Monday, August 2, 2010, 5:32 PM > > > > > > > > Â > > > > > > > > > > just got an update on friends daughter again - they basically told him just now she's going to bleed to deah if they wait or at any time the stool could back up into her and poison her -I mean they are up against a wall and even after they remove the colon it leaves a ton of problems still - how do you stop bleeding??? what do people do in this case - i mean scd can cure people but has it saved people that bad?????? > > eileen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 they had weaned her as it wasn't working - does anyone have ideas of types of steroids, doses etc that could possibly help???? thanks all Eileen > > > > From: blackguitarmaker <autumn71a@> > > Subject: bleeding to death > > To: BTVC-SCD > > Date: Monday, August 2, 2010, 5:32 PM > > > > > > > > > > > > > > > > Â > > > > > > > > > > > > > > > > > > > > just got an update on friends daughter again - they basically told him just now she's going to bleed to deah if they wait or at any time the stool could back up into her and poison her -I mean they are up against a wall and even after they remove the colon it leaves a ton of problems still - how do you stop bleeding??? what do people do in this case - i mean scd can cure people but has it saved people that bad?????? > > > > eileen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 If they need an immediate solution then they should be using high doses of IV steriods (not oral). When I was diagnosed at 17 years old I weighed about 85 pounds and I think I tolerated 60-80mg of prednisone(and I was in dire need of it). I'm not sure they would go that high for a 6 year old though. I can't think of any other drug that kicks in immediately. It sounds like this is a pretty serious case. I will send out some good energy vibes for your friends... -Joanna > > they had weaned her as it wasn't working - does anyone have ideas of types of steroids, doses etc that could possibly help???? > thanks all > Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 just got an update on friends daughter again - they basically told him just now she's going to bleed to deah if they wait or at any time the stool could back up into her and poison her -I mean they are up against a wall and even after they remove the colon it leaves a ton of problems still - how do you stop bleeding??? what do people do in this case - i mean scd can cure people but has it saved people that bad??????This makes me so sad to hear this. The only other thing I can think of is a stool enema; you know, the ones with stool from a healthy person that's supposed to restore gut bacteria or something? I'm not sure that would help or hurt at this point, but it's a thought. The SCD is a long term solution, and I don't think it will be enough to save her if it's that bad. She would have to get over this hump first. I'm praying that she'll get over this hump with her colon intact, but no colon is worth someone's life. Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 75 mg 1x per dayPrednisone 12.5 mg 1x per day (trying to wean!!!!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 > > just got an update on friends daughter again - they basically told him just now she's going to bleed to deah if they wait or at any time the stool could back up into her and poison her -I mean they are up against a wall and even after they remove the colon it leaves a ton of problems still - how do you stop bleeding??? what do people do in this case - i mean scd can cure people but has it saved people that bad?????? > eileen > Eileen, I was in a major hospital with severe Crohn's Colitis. There was a constant battle with the lead Gastro there who insisted that he absolutely had to take my colon. I refused, so they had no alternative but to put me on IV steroids and nutrients. It took three weeks but the inflammation was reduced to the point that SCD could do its thing. I had been on SCD before the hospital stay, but the inflammation was so severe that diet alone just couldn't have an effect. Oral prednisone is not effective under these circumstances. Only with IV can they administer the levels of steroids that are required. After my inflammation was quieted I was discharged and put on pred. @ 70 mg. I started tapering immediately. SCD was working then. I still have my colon, and things are good. Les Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 This is SO sad, but at some point, surgery is necessary, and I think this child needs it. SCD can still help her deal with what she has left of her colon after she recovers.Steve CD 1973 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 It may be worth considering hospital feeding via an IV drip. This is give the gut a rest and stop providing nutrition to the bad-bugs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2010 Report Share Posted August 3, 2010 she's been and is on IV in hospital now- 1 happy note - her dad prayed over her and 5 minutes later the doc came in shocked that her blood count came up 2 and they didn't have to do another transfusion last nigt - awaiting update today - thanks all - any other thoughts / advice is appreciated! eileen 2 1/2 years scd > > It may be worth considering hospital feeding via an IV drip. This is give the gut a rest and stop providing nutrition to the bad-bugs. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2010 Report Share Posted August 3, 2010 How wonderful to have a bit of good news here. Let's hope it will continue. she's been and is on IV in hospital now- 1 happy note - her dad prayed over her and 5 minutes later the doc came in shocked that her blood count came up 2 and they didn't have to do another transfusion last nigt - awaiting update today - thanks all - any other thoughts / advice is appreciated! eileen Quote Link to comment Share on other sites More sharing options...
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