Steriods again?

Dear All,

I know this post may be more appropriate for the "Crohns's Section", but I am still awaiting my approval which I submitted a month ago.

Firstly let me explain, my six year old daughter was diagnosed with Ulcerative Colitis, Primary Sclerosing Cholangitis and Kidney Disease in 2010. We have had a rollercoaster of a journey. She had an appointment on the 25th July 2013 and for once I was happy to attend because she had been doing well (No blood in her stools and she was actually having formed stools for over week prior to her appointment). She has been placed on the immune suppressant and I was kind of hoping that they would reduce it, as I do strongly dislike that drug and the steroids. However, although they agreed that it was a "textbook" stool (their words not mine), her inflammation numbers were up to 119. The consensus was to increase the immune suppressant and put her back on steroids. I was politely reminded that my daughter would never be "alright" (which I already knew, but seeing how she had been I had been over the moon). I was disheartened to say the least.

Has anyone else been subjected to long term steroids and the immune suppressant? What are the side effects?

I am really concerned.

Kind regards,

Mel x