new member... need advice!

Hi

I've been reading this site for a while, and love the advice i've gotten.

Well I am currently in the hospital for a flare, that I didn't think was that severe, but it is. This is my 3rd hospitalization since march. My disease is affecting my whole large colon. I am currently on cimzia and 40mg prednisone. The doctors say I have tried everything. I genetically don't work with 6mp or imuran. Remicade worked for a while but then stopped, as well as humira and methotrexate.

just yesterday was started on a low dose 6mp along with the steriods. however my current doctor doesnt think this is a good idea, and that the risks outweigh what benefits may or may not happen. a total colectomy has been in the talks and I honestly want that to be the complete last option. I am only 21 years old trying to finnish up my last year of undergrad. I am just going with the flow, hoping this flare will turn the corner but this is my second week here and still having blood and lots of pain.

I guess my questions are, does this sound hopeless? I feel like i know a lot about this disease and then other times i feel completely clueless. I don't know if i am making the right decisions or making my self worse. I'd love to keep my intestines, but don't know would life be better without it? Has anyone had sucess with the surgery?

I'm just stressing out and need to get out of here!

Welcome to Healing Well, mcka! I'm sorry that you are going such a long rough patch. Three hospitalizations for Crohn's in 8 months pretty much says that your disease is severe. When you said that 6MP and Imuran don't genetically work, are you meaning that you don't metabolize them? Did they do a test prior to you starting them that showed that to be the case? It would seem that beginning 6MP if you don't metabolize it properly would be something having to be monitored very closely. I am not that familiar with the problem of people not metabolizing the medications to have much input.

Having your colon removed should be the last resort. Once it's gone, it can't be put back. Ans as the last poter wrote, the CD can come back somewhere else. Have any of your doctors talked about complete bowel rest by putting you on something like TPN for a while. I'm not even sure this is an option but I know others with CD in their small bowel have gone that route.

Wish I could offer more suggestions. Hopefully others will be along to comment.