Newly diagnosed & First round of steroids

Hi all,

I’ve been recently diagnosed (Sept 2021) and have been flaring since around July. My IBD doctor finally put me on a round of prednisone and it’s my third week of tapering from 40mgs with all the lovely benefits of weight gain, fat redistribution (humps for days), and mood swings, apparently? This is after budenoside enemas and ASAs didn’t quite get me in remission. So now we are trying all three things at once.

Even if I don’t sit upon my porcelain throne 6x a day anymore, I still experience bleeding. At this stage, I’m even starting to wonder if I’m steroid refractory and will have to explore other treatment avenues

I’ve been having an incredibly hard time coming to terms with my diagnosis in the midst of the pandemic, a new job, and all the implications it has on my day-to-day. The constant fatigue has been debilitating and I’ve been struggling since August. As this condition is invisible, it’s been challenging to convey and understand my own body when I’m feeling not-so-well - practicing mindfulness and kindness with myself has already been a development point even before my diagnosis. Somehow I feel like I’m grieving for my past life, when I didn’t have to think about whether I’m safe to travel for work when taking immunosuppressant medication. I know it probably sounds silly to those who had to grapple with this your whole or a good chunk of your life; you have my infinite admiration for the perseverance and strength this community continues to display on a daily basis.

Rant over! Any wisdom you can share with me would be incredibly helpful