Hey Ryleigh, welcome to the board...I haven't been posting as much lately for a few reasons, the most exciting of which is that I think I'm headed into a remission. For about a year I was pretty ill; terrible diarrhea 10-25x/day, sometimes with blood, severe abdominal pain, fevers, weight loss of 25 pounds, constant mouth sores, etc. Had a lot of tests done, several of which were "abnormal" (small bowel series, upper endoscopy, fecal occult blood and leukocytes) but was never told what was causing the abnormalities. Docs thought it was Crohn's disease but my colonoscopies and capsule studies were negative for evidence of IBD, so they just sat there scratchin' their heads. They did concede that IBD can be hard to find and sometimes it can take a while to be properly diagnosed. They did try their hardest to minimize my symptoms.I've tried a lot of things: anti-diarrheals (everything from Imodium to Lomotil to cholestyramine), fiber therapy, probiotics, diet modulation, etc. with minimal or inconsistent success. I've been in the ER on about 6-7 occasions for dehydration or severe abdominal pain. Had my diseased gallbladder out over the summer which helped the nausea and URQ pain go away but unfortunately not the rest of it.
At this point, though, I'm going to the bathroom only 3-5x/day, haven't had bad pain or bleeding in about six weeks, haven't lost any more weight in a couple of months, and generally feel like maybe things are looking up. My PCP said that if it is Crohn's, I could be going into a spontaneous remission, which is just fine with me. Just have to hang in there until things either get better or worse, is the way I look at it.
It is definitely tough to keep a good attitude and I've only been dealing with this for a year. I'm glad you found us here, but I'm sorry you too have been suffering. There is a wealth of information here that hopefully will be helpful for you!