u/JobInformal6711

I have failed two biologics and Rinvoq in my 6 years with UC, since 18-years-old. Never once in remission.

I received word today that I will be given one more treatment, Mirikizumab but also have been referred to a colorectal surgeon to discuss options if (when) it fails.

I have zero faith that this isn’t treatment-resistant, but don’t think I’m doing myself good with this mindset.

I really don’t want surgery, what’s everyone’s experience with this treatment?

So I was put on Rinvoq in 2023 following a few years of being severely unwell with UC. All has been going fine, sure I’m still not 100%, but I can broadly do all the things I want to be doing.

It started to lose its effectiveness a year in, but still urgency was mostly gone and frequency was down.

Today I go for a scope, conducted by my consultant, within seconds he can see the medication doesn’t work anymore and says that the treatment has to stop.

I have been sitting in that feeling for hours now — I feel terrible.

I thought I was making so much progress but now I’ve been sprung back into uncertainty. I’ve been prescribed pred until a new medication (likely Omvoh) is sorted.

This has hit me much harder than I expected and it’s the first time I’ve felt there is no way out of this. 6 years, never in remission only small bursts of not feeling horrific.

Despondent.

There have been points where I have been unbelievable sick with this illness. I’ve gotten to an uneasy stability with Rinvoq over 2 years but I’m still on paper severely unwell.

Just did a calprotectin test and came back 1,300. I feel fine. It’s baffling my consultant that I could get through my day and work etc. (I can’t do physical activity which or exercise which id like to but hey uneasy stability).

Anyone ever felt good in person and not on paper? How was that solved if solved at all? I feel I’ve hit my ceiling of health without removing the colon.