I have Left-Sided colitis. I was initially diagnosed at 18 with proctosigmoiditis, but my first GI didn’t seem too concerned...I was on Lialda, but the disease progressed anyway. I also had concerning elevated liver enzymes from the Lialda and so cannot take it anymore.
My new doctor has put me on Entyvio. I’ve been on it since November 2017. I tend to have short periods of remission (a few months at most) before all of the symptoms come back for no apparent reason. It seems like a cycle, and I’m a bit worried because my doctor wants to give me another colonoscopy (which i’d like to avoid if at all possible.) I don’t want to take any other meds on top of the Entyvio. I found rectal Cansa to be somewhat helpful, but it didn’t completely heal anything and I had a horrible reaction to a steroid enema I was on for a while, so I’d love to avoid that as well. I will not take oral steroids for longer than a few weeks. I don’t think the long term side effects are worth it, and as soon as I taper of the steroids, the symptoms come back anyway. I seem to feel better when I eat less. I’ve tried cutting out different food groups, but outside of the obvious no-nos (nuts, granola, popcorn, stuff like that) there doesn’t seem to be any specific food that causes problems...instead it is more like my body just wants me to eat LESS, which I need to try harder to do...
it’s just hard because I lose weight so easily and really enjoy food.
Anyway, this is all just background/preface to my main problem/question. about
a year after being diagnosed, I developed peripheral arthritis. It affects multiple joints and moves quickly from one to another. I was on Humira for a year (and that is when I developed the arthritis, but I’m still not sure if there is a connection to the med or if it was coincidental.) It’s been a few years now (5 years since I was originally diagnosed) and the arthritis continues, even when my UC symptoms are better. I also developed large, bruise-like knots on my legs that appear when I do a lot of walking, dancing, standing, etc. My doctor says they are probably EN, BUT sometimes they look like bruises and sometimes all I can feel are muscle knots under the skin. It hurts just as bad as the arthritis, but instead of affecting a specific joint, it will affect an entire leg or muscle group. Sometimes it swells and turns red like an infection. It always gets better after about
24 hours of continual rest.
The problem is that I’m a grad student. I work at a college during the school year, but I have to do retail during the summer. I work 8 hour shifts and the pain is excruciating. I’m afraid I’ll lose my job, but my doctor has no idea what is going on really or how to treat it. He says treating the UC will fix all of the other problems, but it almost seems entirely unconnected. And even if it isn’t unconnected...I’ve tried so many different types of meds that haven’t really helped., I think the Entyvio still needs more time to work fully, but if anyone has an ideas on what’s going on with my legs, please share them with me! I’m also
open to medication/diet suggestions—as long as the suggestion doesn’t involve long courses of oral steroids or steroid enemas of any sort.