Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 does anyone have ideas of types of steroids, doses etc that could possibly help????Steroid/entocord enema? 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 3, 2010 Report Share Posted August 3, 2010 Way too young to go through this. I hope they find a solution that works soon. I used to know someone on-list in a crohn's group who went through something similar. They put her on 6MP and remicade and she kept her colon. Over the span of a few years, she came off almost all meds and went back to work. It was *heck* for several years though until she was forced to get off remicade and 6mp due to a reaction and from there, she started improving. I know it's not pc but if you want a list of prayer request lists, I have a couple bookmarked and I will remember her in my prayers also. Way too young to be so sick. Debbie 41 cd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2010 Report Share Posted August 3, 2010 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 Well I'm certainly glad about that! 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 3, 2010 Report Share Posted August 3, 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.And not everyone can tolerate that. I certainly couldn't. That amount of prednisone would literally have killed me.In fact, I couldn't tolerate anywhere near half that much. n, Crohn's 30+years-- Now available. A fine gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere Quote Link to comment Share on other sites More sharing options...
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