Posted 8/24/2016 4:40 PM (GMT 0)
Glad to hear she's improved and going home from the hospital. Very scary, especially when it involves our little ones!
Prednisone is a common short-term, emergency rescue medication prescribed for ulcerative colitis. It's quick working medication that relieves the worst of our symptoms. Not to scare you, but prednisone has a lot of nuisance side effects and I think doctors do a bad job of informing people about them. Especially with a child, reassure her that if she feels a bit off or not herself, then it's the medication causing them. Things like brain fog, wild mood swings (anger, anxiety, and depression), insomnia, rapid heartbeat, night sweats, bloating, and insatiable appetite are common ones. We don't get all of them, but usually some.
Prednisone is temporary and I'm sure your pediatric gastroenterologist will prescribe some better medications when you next see him/her. I'd ask about her uc maintenance medications. As ulcerative colitis requires an ongoing maintenance medication for life. You take or whether feeling good or bad, as insurance thst you'll have uc under control for as long as possible. Uc always goes through periods of remissions (no symptoms) and flares (full symptoms), and we try to remain in remission for as long as possible through an effective maintenance treatment for the best possible quality of life.
Ulcerative colitis can take a little bit of time to find the ideal maintenance medications and doses, takes a lot of trial-and-error, and that can be frustrating to the newly diagnosed. Your gastroenterologist essentially says try this for 6 weeks and let me know if it works out, if not you go back and adjust meds and doses again. It can take months to get things right and the right combination of treatments.
When you next see your pediatric gastroenterologist, I'd ask how severe the inflammation was ( such as mild, moderate or severe) and how far that inflammation extends (rectum-only involvement is proctitis, rectum and sigmoid involvement is proctosigmoiditis, and the entire large intestine involvement is pancolitis). These are important to know as it impacts her prognosis and medications.
We live pretty normal lives once our uc is under control, but patience, persistence, and being and advocate for what your daughter needs for the best possible quality of life are essential. Our doctors help, but don't know everything or fully understand how debilitating untreated uc symptoms impact our lives. We often have to advocate and insist on things we need to be well. So learn all you can, ccfa.org and other sites are great resources. Ask lots of questions. And try not to worry about worstcase scenarios! As some have very mild and well mannered cases of uc.