I just wanted to update everyone on my daughters condition, She had her resection yesterday. They removed the last 5" and gave her a new stoma. It looks so much better and she's finally able to walk around and play without pain. She's such a strong little girl. Her docs are going to start Imuran most likely next week and they are tapering her steroids now. I am praying with the Imuran the crohns will not reappear again.
thank you again for all of your well wishes and prayers.
For Stripey..I'm so sorry to hear that you short bowel syndrome. That was and still is my biggest fear for my daughter. Since she is only 5 I know there will be plenty of years ahead and chances for Crohns to come back. I wish we didn't have to remove any part of her small bowel now but it really needed to be done. It was so inflamed and the fistula just kept getting worse and was starting to cause a blockage. She was only passing stool from the small fistula hole and she was in so much pain from it. but I'm so glad to hear that it doesn't seem to sound as bad as I thought. I thought when you were diagnosed with that short bowel that pretty much meant you had to live on a machine and depend on TPN to feed you and give you your nutrients.
thank you again for sharing your story.
Post Edited (katiesmommy1) : 9/15/2011 3:39:27 PM (GMT-6)