The Hokey Cokey.

I’m in and out of hospital like the bloody hokey cokey. I’ve been home for about 10 days after another 6 day stay.

The diagnosis - ongoing flare that can’t be controlled without steroids.

The treatment - I had IV hydrocortisone as soon as I got to a and e for 5 days. Then weaned on the prednisolone oral pills (+mezavant +pentasa). Colitis was stable enough to come home but my potassium and heart rate were dangerously low again which kept me there for an extra couple of days. I was discharged with low potassium and maintenance drugs.

So what happens now?

The day after discharge I was back at hospital to start my treatment of Ustekinumab. A biologic drug that I should have started a long time ago. This was given as an IV for a couple of hrs. Side affects have been a little wild but at this point I don’t know what’s the flare, what’s the steroids (or from coming off the steroids), what’s just winter bugs and what’s the new drug…! I have quit trying to work that out.

The new drug can take from 2 weeks - 3 months to start working. So I have no choice but to hope it starts working soon because my flare is already starting to show again and if it keeps it up I’ll be back in hospital. I’ve got some seriously good Christmas plans this year and would love to enjoy them.

Keep everything crossed for me.

L x