Lab results are just fine ... but *I'M* NOT!

I have been very ill. Really difficult flare up with tons of blood, mucus, pus, cramps, low back ache, urgency, accidents. And, I always have joint pain. On the 40 day taper of prednisone Mid May to end of June. Prednisone did not resolve the symptoms until day 20! Finally cleared up and doing okay. Last week, back with a vengeance. I am exhausted! Started daily 20 mg prednisone for 30 days on Saturday.

Thing is ... lab work I did on Friday shows Sed Rate of 2 and C-Reactive Protein of 1 >> NOT showing inflammation, etc. This has happened before, where the lab work does not show a problem.

I don't think ulcerative colitis could be a misdiagnosis as I have the classic issues ... and, I believe my colonoscopies have shown UC.

Is it weird that the labwork is not in sync?

Blood work isn't always a good indicator of a flare. Mine are usually a little above normal even in confirmed remission. Faecal calprotectin stool test is a better way to check inflammation in the colon. Maybe ask for that test.

When flaring 20 mg of pred is pretty low especially with the severity of your symptoms. My last flare I was on 40 mg for 2 weeks with no change so doc upped me to 60 mg and that made the difference. I was able to get functional pretty quickly and then had a long taper while I was starting Remicade. Have you started the new med yet? Meds don't usually work immediately so you could be suffering for a long time. If you can't get any relief on 20 mg, please call your doc or send him a message through the patient portal if he has one. He may need to bump up the pred dosage.

Are you using any rectal meds? They can really help calm the rectum and that's mainly where the urgency comes from. Some docs don't ever mention them. I would never have known about them if not for this forum (thank you Quincy). Since your flare sounds pretty bad, the best bet is hydrocortisone retention enemas. It will put medicine directly on the inflammation.

When you had blood work, did they check your hemoglobin levels? When flaring with lots of blood you risk becoming anemic.

So sorry you are so ill. I hope you can find something to help soon.

I have UC, and my CRP etc has always been normal. Blood tests are not diagnostic for UC (especially as the inflammation markers can be caused by multiple factors). I find calprotectin levels (measured in stool samples) to be far more accurate in indicating if i have bowel inflammation, but even these do not work for everyone.

I'm confused. I met with doctor last week and we decided to move forward with moving to a biologic. Had a colonoscopy today to set a baseline and see what everything looked like .. since my blood work has not shown inflammation / flare. Just got home. The colonoscopy was NORMAL. Two polyps. No indication of active UC. So we will stay with the current meds. I just don't understand. I have to wear depends because i have bloody mucous that sometimes gushes out. I have had several really embarassing events. I always have the bloody mucous. Stools sometimes look like coffee grounds; sometimes like raw hamburger. I am NOT having a great deal of diarrhea but I have discharge multiple times a day of the mucous. I have urgency where I feel like I need to go. I generally have low level cramps and low back ache. He said it is IBS and we'll set a plan for treatment when I see him in two weeks. Staying on the Lialda and 50 mg Imuran. I look forward to your insight as I am really discouraged right now.

That sounds so strange. I always thought that one of the big differences between UC and IBS is that you don't get blood with IBS. Maybe you have microscopic inflammation. The biopsies will show that. They did do biopsies, right? Still, with the severity of your symptoms seems like something should have been visual. It's almost like they were looking at a different colon!

Hope you can get some relief soon.