Thanks for the tag, Jennifer.
Hi Admaster99, as Jennifer said, I'm undiagnosed too and I've also been on short trials of steroids. I first started having symptoms in 2009 - and in mid 2010, I asked for a trial of prednisone (corticosteroid). I was put on 10 mg for 5 days - that's a low dose and a short run, obviously. At the time, I was told that pred wouldn't work on IBS but it would work on IBD (Crohn's/colitis). Well, it worked fabulously, my symptoms went away with in the first day and I felt like a million bucks! And I felt horrible after the 5 days was up, all my symptoms returned with a vengeance and I felt worse than ever. Because pred worked so great, my doctors said it can't be IBS and started focusing on inflammatory illnesses (pred is a systemic drug that works on inflammation wherever it may be in the body).
After that trial, my GI suspected I might have Addison's disease. Addison's can mimic IBD-like symptoms, and it responds best to a low dose of prednisone (the ideal dose for Addison's is 7.5 mg - the body naturally makes about 7.5 mg of cortisol per day, and with Addison's the body's adrenal function is impared and it cannot make the necessary 7.5 mg per day). I underwent blood tests, and Addison's was ruled out. My GI also felt we should rule out Lupus (that also responds to pred and can also cause IBD-like symptoms), so we ruled that out with bloodwork as well. Because the other likely suspects were ruled out, my doctors now treat me as though I have IBD, although I'm not officially diagnosed and we still don't know what type of IBD or where it's located in my digestive tract, etc.
Because I'm not fully diagnosed, my GI won't put me on any of the stronger treatments. My options so far have been Entocort (a steroid similar to pred, but not systemic and less harsh with fewer side effects), and the 5ASA drugs (Asacol, Pentasa, Apriso, Delzicol, etc). These are all pretty mild, but fortunately my IBD seems mild too so far, so these meds have worked pretty well overall for me. I would imagine that since you're undiagnosed as well, your doctors will likely only put you on the milder medications. In my case, I was on Entocort (steroid) to get me into remission, and then for the past few years I've been on 5ASAs to keep me in remission. I've been in a very mild flare for the past 6 months or so, but I'm doing better lately (I just had a steroid shot in my hip for my arthritis, and I can tell the steroids are helping my guts too!). If it were me, I'd ask for something like Entocort and/or 5ASA drugs. Do some reading up on these drugs so that you can be really informed and can tell your doc exactly why you want to try these meds.
Jennifer mentioned CRP - that can be a good measure of inflammation in the body for most people. But, about 10% of IBD'ers will not experience a raised CRP, even when in a horrible flare. I seem to be part of that 10%. So if your CRP is in the normal range even when you're feeling horrible, then you're probably in that 10% as well.
And I have to disagree with what UnXmas said. Tests don't always pick up on IBD. It can hide notoriously well sometimes. I have an aunt who just got diagnosed with Crohn's recently, but she's had symptoms for about 30 years. And I've read that on average, it takes about 10 years for things like Crohn's to get diagnosed from onset of symptoms. In my case I've been ill for just shy of 4 years now and still no proper diagnosis for me - I had another colonoscopy last month but it still looked totally normal both visually and on biopsy. Sometimes it just takes awhile. In my aunt's case, it wasn't until scar tissue developed that her doctors were able to see evidence of Crohn's. Doctors can be wrong, they can miss biopsying the right spot, IBD can hide out in the small intestine where it's difficult to see/get to, etc. Don't let some normal test results put you off - you know your body, you know things are not right, so keep fighting for answers! It may take awhile but we'll all get there eventually.
Hang in there, good luck, and I hope that helped!
