Hi everyone, I’m really hoping to get some advice or hear from people who’ve been through something similar.
I have ulcerative colitis and recently I think I triggered a flare after lowering my mesalamine dose from 2 pills a day down to 1 for about a week. I know that was dumb of me- I was feeling so great and I worry about taking medication and the affects on my kidneys and I truly thought I’d be fine with going down to one a day considering I sometimes missed a pill in the past for a few days with no issues whatsoever. I’m honestly feeling really guilty and anxious that I caused this myself.
Right now my symptoms are confusing me:
No active bleeding
Mostly mild symptoms, but definitely increased mucus (especially in the morning)
Stool is softer and increased number of BMs a day
Some cramping in left side
No severe urgency or 10+ bowel movements like a major flare
But what’s really stressing me out is my fecal calprotectin came back at 1350, which seems super high compared to how “mild” my symptoms feel.
I’ve now gone back up to 3 mesalamine pills a day and just started using enemas (only a few days in so far). I know it can take time, but I’m struggling mentally because last time I had a flare which was a million times worse than this I improved really quickly with treatment.
This time it feels slower and less predictable
I’m scared I made my disease worse long-term by adjusting my dose
I don’t understand how my calprotectin can be so high without bleeding
I guess my main questions are:
Has anyone had really high calprotectin with relatively mild
Is it normal to not see improvement within the first 5–7 days of starting enemas?
Did things still turn around for you after a couple of weeks even if the start was slow?
It’s been 5 days of enemas and I’ve upped my pills for about 2 weeks now. I haven’t noticed significant changes yet. I’m so worried.
I’m trying to stay calm but I’m honestly really anxious that I’ve somehow changed my disease course or that this flare won’t go away.
Any experiences or reassurance (or even just honesty) would mean a lot. Thank you so much.