Hi Jenn_m and welcome! You have found a great place for input!
Wow! You've been through a lot! I hope you are successful in finding something that works better for you!
My son was diagnosed at the same age you were--he's just a year younger than you. It's tough, or at least it was in the beginning, but he is managing his CD with diet and supplements. Knock on wood, it seems to be working because he was told in June, one year from his diagnosis, that he is in complete remission. You are young, too, and it would be so worth it to give this a try. Maybe, just maybe it would work for you. There are other folks here for whom diet and supplements--possibly in conjunction with the most basic medicine like Asacol or Pentasa--are working.
Are you familiar with either The Maker's Diet or the Specific Carbohydrate Diet (SCD)? Both eliminate all processed foods, sugar, and certain starches or carbohydrates. The theory being that these foods feed the bad bacteria in the gut--and that's the LAST thing we want to do! We want to starve the bad guys out and re-populate the good guys with a good probiotic and/or SCD legal yogurt. And because these diets also remove gluten from the diet--especially the SCD-- many people benefit from that alone.
If you are interested, I can give you links and cook-books with endless information and recipes.
You probably won't get an endorsement for any diet whatsoever from your GI. We didn't. But now they are very curious as to what we did.
Of course there are always new drugs on the horizon. Maybe one will work for you! I wish you the best!
Mom to 16 year old boy diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3, a good multivitamin, SCD legal yogurt, weaning off Asacol.
Started The Maker's Diet in Sept. '07. Gradually learning/using more SCD recipes, too! (cooking challenged)