Hi All,
I've been reading this board for a while and have learned a lot. I've even done some "drive by" postings here and there but I've not introduced myself - I still find it very difficult and exhausting to think and write about my daughter's history.
She was diagnosed with UC almost four years ago (pancolitis) and is starting remicade today. She's pred dependent and has been on (even at low doses) more than off in these years. She's intolerant to imuran/6mp because she can not metabolize them correctly and has had seriously high liver enzymes as a result.
Her QOL is seriously compromised and she's missed so much school and so much of her childhood. It has been a long, hard journey. To add to this, this past winter she started breaking out in what the allergist has decided to call "chronic ideopathic urticaria" (though he didn't test much - we are seeing a new set of allergists next week).
If Remi fails, colectomy is next though i worry about a pouch on her now very reactive skin.
Also, we've tried every single alternative treatment out there almost - 5 chinese med practitioners, ayurveda, homeopathy, daily fecal transplants for three months, homeopathy (not that I'm a believer but desperate times...), chiropractic (see homeopathy), scd/gaps/paleo diet (worked miraculously and then just stopped), ldn, naturopathy and a zillion supplements, antibiotics (not alternative but sort of, as rxed by her GI) and the list goes on.
I'd love to hear any success from those whose children flared for a very long period but the found remission. Anyone?
I've been reading this board for a while and have learned a lot. I've even done some "drive by" postings here and there but I've not introduced myself - I still find it very difficult and exhausting to think and write about my daughter's history.
She was diagnosed with UC almost four years ago (pancolitis) and is starting remicade today. She's pred dependent and has been on (even at low doses) more than off in these years. She's intolerant to imuran/6mp because she can not metabolize them correctly and has had seriously high liver enzymes as a result.
Her QOL is seriously compromised and she's missed so much school and so much of her childhood. It has been a long, hard journey. To add to this, this past winter she started breaking out in what the allergist has decided to call "chronic ideopathic urticaria" (though he didn't test much - we are seeing a new set of allergists next week).
If Remi fails, colectomy is next though i worry about a pouch on her now very reactive skin.
Also, we've tried every single alternative treatment out there almost - 5 chinese med practitioners, ayurveda, homeopathy, daily fecal transplants for three months, homeopathy (not that I'm a believer but desperate times...), chiropractic (see homeopathy), scd/gaps/paleo diet (worked miraculously and then just stopped), ldn, naturopathy and a zillion supplements, antibiotics (not alternative but sort of, as rxed by her GI) and the list goes on.
I'd love to hear any success from those whose children flared for a very long period but the found remission. Anyone?