Hi - did your gastro take biopsies when doing the colonoscopy/endoscopy procedures?
These should show whether or not you have IBD (Crohn's or Ulcerative Colitis).
I don't think you will get any relief until you get a proper diagnosis. The meds you are taking will do nothing to keep the disease in remission and if you do have IBD, most probably need an immuno-suppressant, of which there are many. I inject methotrexate weekly, a chemo drug that used to be used for breast cancer) and have recently started on 8 weekly infusions, as a day patient in hospital of the anti-tnfA drug, Remicade. My symptoms are back - faecal incontinence within an hour of eating, distended abdomen, blood clots in my stool,,horrific pain when I pass a motion, etc. However, having suffered with Crohn's for 40 yrs, I have almost learned to live with it. I just get proactive and ask to try new drugs as I believe I get resistant to them after a while. It is an ongoing battle, for sure, but what alternative is there?
I don't think the ER can help you, except to give you morphine! They are not gastros and unable to do the tests required. Your best bet is to find a really excellent, committed gastro who has experience of inflammatory bowel diseases.
Take care, and hope you get answers soon.
Liz.
You sound like me. Except I am gaining weight instead of lossing weight, which does not make sence to me. If you read my comments we sound the same. These doctors just keep sending me for more test and they keep telling me what is not wrong with me. I am getting to the point I want to hear bad news just so I have some answers and can start fixing this problem.