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My daughter (17) is newly diagnosed with Chron’s, after so long watching my vibrant girl suffer, finally a calprotectin result showed 1296 reading and she was admitted by ambulance to hospital. Where she spent a week, got the most needed colonoscopy and was treated acutely. Since October she has only had slight improvement for the shortest of time, and is now on her second round of steroids. She has also been put on octasa since being admitted. As we are so new to all this, I’m after some answers from people who know what it is like to live with Chron’s and the side effects of the diesese itself and the medication she is on. (We are seeing consultant again in Feb and there is talk of immunosuppressants) currently she is experiencing hair loss which is causing her deep distress, she is fatigued (anaemia has been treated with an iron infusion) night sweats, rectal bleeding, mood swings and the change in face shape (this did go down between stopping and restarting steroids) she also has intense pain at times and is still up frequently through the night despite eating a very plain vegan diet....
I just feel so helpless, i continuously say “I’m sorry I don’t know the answer to that, but I’ll try and find out” I don’t know what to do to help or say, she worked so hard to get her gcse results despite being unwell and to see her curled in bed, having had to postpone college and going from being a social butterfly to rarely going out is heartbreaking. I do try and be really positive around her, and I am so proud of how she is handling it all, but I’m a little bewildered by it all. Any advice (especially about the hair loss...all she is dealing with and this is the thing that’s she is finding the hardest) will be most gratefully received.
Thank you x
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