Hi HealingWell I am new here. I have had UC for about
8 years now, off and on. Had periods of remission, had periods of really severe flares. My UC is weird because it sometimes responds really well to meds and then other times it seems like nothing is working, and I just have to endure. Remicade and Entyvio worked for a while but after about
8 months or so each they failed. Now I am on Xeljanz, Imuran and rectal meds.
My UC is all left sided but the last scope shows it has spread right up to the transverse colon, so it has become a lot more painful.
I've been off work for about
6 months now. This flare started just under a year ago. Really I don't know what brought it on. Who knows, who cares. You can drive yourself nutso trying to think of the reasons why.
I would call my flare moderate but the constant bleeding makes me weak so I can't work, so actually it's considered severe. On government disability right now which totally stinks but I am happy to have a life line at least. Right now I am working with a good naturopath + modern medicine to get this under control.
Colectomy has been recommended but I have two genetic disorders related to blood. One is hemophilia and the other is hemochromatosis. The first one means I could easily bleed to death in surgery, the second means I could easily get a post-op infection. So let's just say I can live with this for now if necessary.
I'm also on anti-depressants because, well, you know how it is. No easy way to sugar coat this kind of lifestyle. I don't have a partner anymore and live alone. Most of my time is alone actually. I have some good friends but you know, over the years people move on with their great lives and the disabled guy gets left behind. Can't blame them really, because illness is a really heavy thing to be around and it takes a certain kind of person to sit with you in those dark places.
I pass my time with hobbies. I have learned how to make jewellery that is good enough to sell. Pendants, rings and stuff like that. I also write for a major health blog to make some extra money. I used to be a lab tech before all this happened. Yes that's right, I was the one looking at your blood and stool samples to see what kind of critters lurked there. Oh the irony.