Hi, I started to read your post and was brought back to when I was 12 and diagnosed with Crohn's. I was just starting grade 7 when my family doctor refered me to a Gastro. It took seven years for someone to finally see that I was indeed sick and needed help. I ended up going into the hospital for the up one end & down down the other series of scopes but my gastro couldn't put the camera through my intestines b/c they were so inflamed. I was admitted right away into the hospital and put on prednisone, mesasal and had a tube feeding me. Finally after one month, and 10 pounds heavier, I was released to go home but continue with the tube feeding throughout the night. I finished grade school and my first year of high school with many ups and downs and many different medications. In 2000, I was admitted into the hospital and had emergency surgury on my bowels. Five years after that surgury I was in the hospital again awaiting a second surgury. I am now 23 years old, have stopped all the medications that you mentioned and others that I have been placed on, and swear by Remicade. It has so far proven to be the only drug that doesn't give me nasty side effects and has proven itself to work.
After going through what I have, and still being so young, I have to say that I can completely relate to where your daughter is now, and what she is feeling. I would have to say the most important thing you can do as a mother is to be strong for her. If she is anything like me, she will know when you are stressed or sad about her having this disease, and that will hurt her more than the disease itself. I was able to pick-up on my moms feelings, and felt like I had to be strong for the both of us, which made some of my days even harder.
If I can suggest to you that you bring up the idea to her about starting a journal with her feelings. For example, if she writes down just one word about her feelings, such as 'scared', you would ask 'why are you scared', or 'what is scaring you'. Then share and find the answers to her questions and concerns together.
Another thing to remind her of is that she is not alone in this world. She can live her life, go to school and raise a family. Many people have proved that the disease will not take over a life. I haven't let my Crohn's control me, I am now 23, getting married, have a Bachelors degree and couldn't be happier with my life. I have no doubt that she can do the same b/c if we were made strong enough to live with this disease, we were made strong enough to become anything we want.