Input Please!

A bit about me :)

I was diagnosed with UC when I was 12 years old (22 years ago...you can do the math). I've lived with it and dealt with it through all these years simply by pushing through and walking around with symptoms.
about 6 years ago I started having flares that could not walk around with and would put me down for weeks/months at a time. Two per year. I'm sure you all know how the time table works. about 2-3 months of pre-flare symptoms followed by light bleeding, followed by heavy bleeding, then pain, then I'm on the couch for 4 weeks or so (if I'm lucky). I end up losing about 50% of my year.
The only meds I've been given during a flare are Prednisone, which is a nightmare for me. In fact, I will do anything to avoid taking it. I recently went on my dream vacation and was flaring the whole time. I decided not to be upset about it and simply considered it "part of the adventure." The last couple days I was bed ridden but I was happy to have gotten as far as I did. I had my doc prescribe me prednisone before I left and not even flaring in Europe was not enough for me to take it.
Well, I finally submitted and was on a 3 weeks regimen (60mg) which did nothing for me. Finished two days ago and will NOT take it again. I went to the ER two weeks ago and they game me hydrocodone and sent me on my way. The CT scan showed "mild inflammation" which if you consider how much it takes me to simply take steroids, you can imagine how bad the symptoms have to be to get me to actually go to a hospital. I was surprised and not really relieved by the results. The pain meds gave me a bit of relief but ultimately just gave me a week long high.
I'm still really sick and unable to work but I do not know what my options are. I'm thinking of just going back to the ER and staying until they do something. I'm also getting migraines twice a day for the past five or six days. Can anyone suggest a medication that I can ask the doctor for when I go back to the hospital? I've been on the max amount of Asacol for a few years now but that's it. As I'm writing this I realize all I'm doing is trying to find an excuse to not go back to the hospital...SMH.

4.8g Asacol daily

What Gary said...

Wow... im not even sure where to begin.
Medications:
Other m esalamines
rectal mesalamines
rectal steroids
uceris (steroid with less symptoms than pred)
Immunosuppressive - 2-3 to choose from I believe
biologics - 3-4 to choose from

I guess I am most confused why youve been letting this disease ruin your life the last few years?! Imagine a dream vacation with your disease being properly treated!

I... am just really at a loss for words.
sorry youve been living this way. I hope you at ready to face ulcerative colitis and Kick Its Butt!

Have you researched Vancomyacin? Its an antibiotic, but it is showing good results for UC. A lot of GI docs will try this as a last resort before putting patients on Remicade or Imuran. It not only kills off gram-positive bacteria, but it helps to reguate T-Cells, which help modulate the immune system. You'll read all kinds of negative things about Vanco, such as hearing loss and VRE. Those are risks that are associated with the IV form of Vanco, not the oral pill form. The pill form is not absorbed systemically, it stays in the gut. To ensure it stays in the gut, your GI will want to check your Trough levels monthly. Something to think about