I was first diagnosed with UC, ulcerative proctitis to be exact, when I was about 20, which was roughly 15 years ago. I was afraid to tell anyone what was going, with the mucus, blood and urgency, but then finally after about 8 months I did and got a scope, a diagnosis and was prescribed mesalamine suppositories which did the trick in about a weeks time. Fast forward to beginning of 2019, many of the the same symptoms came back. Had a full colonoscopy in 2019 and was my diagnosis was reaffirmed. I ended up in the ER the night of the procedure from what we think was transient bacteremia. I went back on the suppositories, then enemas, then orally, not having much success with any. My symptoms were annoying and difficult to live with but at this point, I would give anything to go back to where I was. At the beginning of 2021, after having no real success for 20 months or so, my doc put me on a short course of steroids, prednisone. Things may have got a little better the first two weeks but then I started noticed upset stomach, burning, pain, and having to get up at night to go to the bathroom. As I continued to taper, things got awful. I was in such pain. Abdominal pain and burning everywhere with no relief. And the few days I want off it completely, I was doubled over in pain, going to the bathroom 20 plus times a day, with unrelenting pain and excruciating pain when going to the bathroom with tremendous amounts of blood. I was forced to go back on and try a slower taper. Though it’s not as severe, things are still awful. I can’t get off the prednisone because things get unbearable but my symptoms are so far off even on 30 mg. I tried to taper, but things go bad, and had to go back up but now things seem just as bad at this dose. My bowel movements are extremely painful. I get up 5 times a night to just let a little puss out. Some days my stomach area is on fire. I sometimes have upper gi symptoms too. The pain in my lower left abdomen never goes away and my rectum is so sore all the time. I also get some pain and bubbling in the right lower quadrant. I never really experienced pain before I started the prednisone. It was a nuisance and there was blood, mucus, urgency and some other annoying symptoms, but now I have all of those same symptoms, worse and I am in discomfort all the time! I feel like the prednisone is somewhat to blame. Either directly causing issues, or sped up and progressed my disease to very severe. My sed rate was 24 before I started the prednisone, which is mildly elevated and my crp was 0. Now after basically 4 months of being on prednisone, my sed rate is 58 (significantly elevated) and my crp is 7 (which is still high normal), which just doesn’t make sense to me. I started humira 4 weeks ago but have seen no improvement from that yet either. I hate taking all these meds, with all their risks, especially when it seems they have done nothing other than worsen my ailment. I can’t take this much longer. I do nothing but lay around in pain all day. I didn’t even know flares could last this long with no sign of getting a little better. Has anyone experienced anything like I am describing? If so, did it get better and how? I also am beginning to question my dx. Maybe this isn’t uc. Maybe crohns. Maybe something else or something on top of IBD. I am so miserable, sad and frustrated. If anyone can offer any insight, I would much appreciate it.
My best to everyone else out there struggling from IBD or anything else for the matter.