I have read these forums from time to time but until now haven't posted. Long story short I was diagnosed with CD in 2000 at age 21, and ended up having an ileocecal resection (removed a little on both sides at the time). Since then I have been generally well, I had a flare up in 2005 that was controlled by my GI with Colazal and a couple courses of antibiotics. Another flareup in '07 but we got it under control with Pentasa and prednisone...
This last March I started going downhill again. In April the doc had to put me on Prednisone as it was the only thing that was helping the pain, I don't have much luck with pain medication. In May I could tell that my GI, who I love, was disturbed my the colonscopy that we did. He immediately placed me on Cimzia once the pathology results from the colonscopy came back negative. I am just about 2 months into Cimzia but haven't seen any improvement - if I get below 20 mg of prednisone I deteriorate quickly with intense pain and quite a bit of diarrhea.
I don't want to go on too long of a rant, so long story short the doc referred me up to Cedars-Sinai in Los Angeles this week. My wife and I met with a wonderful doctor there, and after looking over everything they have taken me off of Cimzia and I will be starting remicade next week, they believed that if I was going to show improvement on the Cimzia I would have seen some of it by now, apparently the vast majority show at least some improvement by now.
More troubling is the fact that the the doctor at Cedars recommended the Remicade basically to save just a very tiny area of my rectum as they believe that my colon is so ravaged with pseudo-polyps and other damage from the CD that it is beyond repair at this point, and even if we do get the CD under control they don't feel that they would be able to adequately screen me for colon cancer moving forward. So basically I'll have 8 weeks of remicade (week 0, 2 and 6) and then a colonscopy at week 8 after which we'll meet with the surgeon and get things scheduled. Apparently the goal will be two procedures - removal of my colon, at which point I'll have to have an ostomy and everything, and hopefully 4-8 weeks later a second procedure to re-connect everything.
I knew I was sick, but I've been devastated since getting this news. I have a 23 month old son and a wonderfully supportive wife, but I hate that they have to deal with this nonsense and I hate being out of commission! I've been on disability since mid-May and now there's not too near an end in site - although if all these procedures go well I hope to be very well and not deal with as much for awhile afterwards.
Anybody have any suggestions how to deal with this waiting the next couple of months, or any other input?
Sorry for ranting!