Hello! I too have severe pancolitis! I have been on the medication ride for about 4 years, tried aasocol, 6MP, prednisone, Lialda and now just started Remicade. My GI suggested it about 1 year ago at this time and I said oh, I'll wait and see. Within that 1 year, after trying to take some vitamins like calcium and vit D, I got a major flare. My blood count down very low, not transfussion state, but close.
It was a hard discussion to make to start Remicade, but I had my first infusion last Tues. 6/23. I could feel that something is working, for about 2 days my stools starting to form, then now on the third day not so much. However, I only go to the bathroom about 3 to 4 times day (but no blood...improvement there) I figure that because I'm so bad that I need to wait and see after I receive all loading doses (3). I weigh only about 132 lbs, so I only receive about 300mg or 3 vials.
Give it a try and see if it works! The severe side effects are serious, but statistically low. Be hopeful! With my first infusion I felt tired that day of infusion and the next day....slight stomache, and headache on third day (but could be weather related...very humid out lately). If this does not work, I too maybe faced with the surgery. My GI did not suggest it yet, he suggest different meds. I am hopeful that something will work. I have kids, but teenagers now....and yes they see how Mommy is.....we can do the best we can. I too hate UC!!
Good luck in what you decide!! Let us know how it goes for you! This forum has been a Godsend for me, makes me feel like I'm not the only one with this disease.
48 yrs old female. Dx with proctitis in 2005, left-sided colitis in 2006, now pancolitis UC in June 2009.
Aasocol, 6MP, prednisone (taper), Lialda.
Remicade 1 infusion 6/23/09.