As you all know, those who follows me and read this blog, I’m very vocal about my IBD and I always trying to update abut my state. It is to document my experience so it may be some use for others suffering from Crohn’s/Colitis or their family or friend.
As some of you noticed on my social media I started flaring some time ago. I was trying to react very quick and stop it before it escalate, but current situation with pandemic making everything very long and complicated.
I have been given 30mg of prednisolone from GP and was awaiting for IBD team at hospital to take the lead over my situation. This took awhile. Low dose of prednisolone didn’t help but prevented serious escalation, I guess. Eventually IBD team got back to me and they have sent me for some tests and they have increased my prednisolone to 40mg. I also had colonoscopy done and this revealed that inflammation is already pretty severe. This made IBD team to look into escalating treatment to biologics, but this needed extra tests and scans.
As I have been already on infliximab this may be the route I’ll be put back on. But there was some issues last time with me taking infliximab I’ll explain one time in separate post. That’s why they also considering three other biological medicines: adalimumab, vedolizumab and golimumab.
Normally I never look on screens during colonoscopy, but this time I have been asked to turn to back which made me look on screen and gosh it made me bit scared. There was scar on scar, loads of pseudopolisps, loads of blood, very red and angry. I think no one was expecting it’s this bad as I wasn’t feel this badly sick. I’m obviously very weak, I’m in loads of pain and I have whole set of side effects from prednisolone. I’m also extremely tired as peak of pain starts early morning/night. Sometimes it is 6am but sometimes it’s 3am. It’s also very unusual flareup because I don’t go to toilet often. I really go only few times a day when normally when I flare we talking here 30 times a day. Now I go let say 4-5 times max. But it looks very bad and I’m loosing blood.
It is much harder to manage it all because of pandemic. This is pity as if I would be resolved earlier probably it would not lead me to this serious state now. I’ll update once IBD team make some decisions. It will take about a week and in mean time I hope high dose of prednisolone will kick in.