Steroids masking symptoms or genuinely a bit better?

I have been doing two steroid enemas a day for a couple of months. Since I started them, I am experiencing symptoms of going four or five times a day, always loose to some degree (ranging from kind of formed stool to complete liquid). Some urgency. The recent faecal calprotectin result of stool test is over 400 (can't know how much over as it goes past the measurable limit).

My years-long 'remission' was one solid stool a day. But I have had some kind of 'flare symptoms' for around a year now. At my worst (before the enemas) I would be going around 10 times liquid with urgency blood and mucus.

Do you think that I seem to be in an OK position here, or do you think the steroids could be masking how bad it is? Could it suddenly get much worse or do you think I'm genuinely doing better than I was before I started the enemas?

Based on your off the charts CRP score and 4-5 bms a day I'd say you've got a lot of inflammation and therefore a lot of room for healing/improvement. The steroids are helping you limp by, but your quality of life and maintenance medications both could be a whole lot better.

Remind us what your current medications are? And what you've tried before...

Infliximab - double dose. Having another infusion soon and going to see if that works because frankly, so far, I have NOT been able to tell if it's doing anything or not.

If it doesn't work, having been on it since January and with the last dose and the next one being double doses, I think it's time to move on and try something else.

Aaaand I have been experiencing a tablet taking phobia that has meant I have not been taking any tablets for months (as the GI is aware of, don't worry). So working on that too because that would obviously open things up a bit in terms of possibilities for treatment.

Thanks for the info guys, it's not what I want to hear, but it's good to have a sense of what's really going on, not what you'd like to have happen (aka complete wellness).

Could the steroids be masking how bad it is? My quality of life is pretty good atm apart from the fact I mostly eat crap like biscuits and white bread because that avoids the insoluble fibre and stuff. It would be a bit scary for me to consider that it doesn't reflect the state of my gut at all... :/