So glad to hear your daughter is recovering. It breaks my heart to hear about anyone suffering in the throws of this disease. IBD can be so merciless.
My son, at 8 years, did develop DVT after 2 lengthy hosp stays and was readmitted into ICU again, too frail and in too much pain to stand but still had to be lifted out of bed and set on the bedside toilet chair every hour or so to cramp and poop out 200-400ml of blood at a time. His diagnosis at this time was UC. Had every test avail. Finally 6 months after the DVT, after many months on 6mp and pred failed again, we opted for complete removal of colon and rectum. We also went against every GI and surgeon's recommendation and refused j-pouch. Post surgery pathology reports on his colon and rectum indicated diagnosis as still UC, all previous scopes yielded UC diagnosis, his illium was clear. Then 3 months after final surgery, he started to get cramps, lose his appetite and energy. Test revealed his illium was inflamed and the diagnosis was changed now to Crohn's. Now he's on remicade and feeling better than he has in many years. We had hoped to avoid Remicade by having the surgery because of the risks, esp to pediatric patients, esp boys. But our son's disease is an extreme case. Your daughter's may not be.
When my husband and I were in the hospital with our son, I read and re-read J-pouch.org and healingwell, and every place we could find to get information on how people were handing j-pouches vs how others were managing with permanent ileostomies. We didn't consider Crohn's much because we were always being reassusred it was UC. It helped to have everyone, even those who had even a remote experience to ours, chime in. It gave us a lot of info to weigh. We decided the safer route for our son and the best way to end his misery was permanent ileostomy and focus on keeping him happy. We are so glad we did. With Crohn's, j-pouch is not recommended, all the ilium that goes into creating the j-pouch must be removed and short bowel syndrome can result.
There are a lot of differences between the state of mind of a 23 year old young woman and a 9 year old boy. But my boy is happy, he is able to have all the playdates he can handle, he enjoys sleepovers now, (he never could before) and even swimming parties. And the ostomy bag is the least (truly, the least) of our concerns. It's maintenance is like maintaining anything else in life. Healthy people blow dry their hair, apply make-up, shave, right? Dealing with an ostomy appliance takes less time than any of those things. One learns how to manage it much quicker than you think.
This may not be your daughters' road, she may respond well to first line treatment. But if it is, at least you can take comfort that it would be manageable.
Take care and keep giving us good news.
Son, age 9, diagnosed with UC age 4, no relief or at best temporary relief from conventional meds, probiotics, SCD, colectomy with perm. ileostomy 2007. Diagnosed with Crohn's 3/08. Currently on Remicade, fish oil supplements, daily multivitamin, Digestive Advantage chron's colitis formula (1 week and counting, still has watery output 2 weeks now and counting).