Posted 9/20/2013 6:03 PM (GMT -6)
Girlzilla - Oh okay. So you think your meds are only partially controlling the disease? As for not being able to distinguish between Crohn's colitis and Ulcerative Colitis, that's actually not that uncommon - about 10-15% of IBD patients are estimated to have indeterminate colitis, where neither Crohn's nor UC can be diagnosed with certainty.
Two things to remember. One, you have an IBD diagnosis which isn't any less 'serious' than Crohn's or UC. If doctors act like they don't care, that's just doctors being doctors. I had years of doctors fobbing me off with a firm (as far as I know) Crohn's diagnosis. Two, for the purposes of treatment it really does not matter a jot whether it's Crohn's Colitis or Ulcerative Colitis, as long as surgery is not required - the meds used are the same for each.
Even with surgery it does not make as much of a difference as you might think: patients with indeterminate colitis do not seem to be at much greater risk of developing Crohn's after surgery than patients with uncomplicated UC.
Anyway, meds not working properly. I don't think it is a great idea to come off them to induce a flare-up, because 1) it probably won't work, at least not in the short term; 2) but if it did work, the disease would be even harder to control; and 3) docs are still gonna be docs and probably not care about your new, more severe, disease.
Instead, argue for better treatment. If you are not on the maximum dose of Lialda, try increasing the dose. If you have rectal/left-sided disease, ask for rectal meds. If your disease is moderate to severe, ask for biologics. If uncontrollable diarrhoea is your problem, ask for a medication to control diarrhoea.
I am tired and am quite sure I have waffled a lot already. Best of luck, I hope you can achieve remission.