Currently in hospital, waiting for surgery (permanent ileostomy). I've been here for 2 weeks now, too unwell to go home and wait for an op date, but too well for emergency surgery. I've been told it'll be within the next few days.
What essentials do I need to order now for when I'm discharged?
Links to specifics (I'm in the UK) would be very much appreciated. Thank you!
Back story:
Official diagnosis in Feb 2024, but symptomatic since pregnancy/childbirth, so just over 3 years in total.
To date mesalazine (oral and enema), azathioprine, infliximab (remsima) and upadacitinib (rinvoq) have failed to get me into remission as have budesonide (oral and suppository) and pred suppositories. I only seem to respond to pred and IV steroids. I am due to start Skyrizi next week and was told that after that, I'd need to consider surgery, as though there are other meds out there, they think it's unlikely I'll respond to any bio similars. Especially as I have had no response to each class so far.
The twist is that I'm day 2 of IV steroids with worsening inflammation and hemaglobin markers. I've been told that Skyrizi isn't an effective rescue therapy so if my markers don't improve between now and the scheduled infusion date, I'm heading for surgery and we'll use the infusion appointment time as a surgery consultation instead.
I have a pretty great team who have emphasised that it's my body and my choice so if I am strongly opposed to surgery we can try the other options but we do run the risk of it becoming a critical situation. For that reason I am leaning towards surgery being the best option. And to be honest, I know it's been a relatively short time compared to many in this sub, but it's been a constant flare for the entire 3 years of my son's life and I don't want to waste anymore time. I'm always in hospital for blood transfusions and iron infusions and tests. It feels relentless.
To those who have had it, tell me everything; pros, cons, regrets, things you wish you had known before. EVERYTHING.
Thank you.