I haven't posted much on here - but I do stop by to read what everyone is up to now and then. I think this is a great community.
I still feel how I felt when I was first diagnosed with Crohn's in May 2008 - Confused. I guess I'm in need of some insight from people who can relate.
Quick backstory: I went to a colon/rectal doctor because I had a fissure and skintag that were bothering me. This tipped the doctor off to a possible Dx of Crohn's but didn't want to make such a "serious call" until further testing. So I had a colonoscopy a couple months later and it was confirmed. She prescribed Pentasa, refered me to a GI and then my journey began....
I remember having a few weeks of stomach pains in May 2007 that cleared up on its own (it probably was Crohn's releated, but wasn't aware of such a thing then). Other than that, I have not had anymore stomach pains/cramps, have never had abnormal BMs and really haven't felt sick at all. I'm completely grateful when I say that I'm still living the life I've always known - this Dx hasn't really affected me physically but it has taken a toll on me mentally.....like I mentioned, I feel so confused as to what I should do. My GI doctor is totally baffled when I tell him I feel fine. He's basing his reactions off of my blood tests and a MRI Enterography. My first MRI Enterography in May 2008 showed significant inflammation in my small intestines. He's big on checking my SED Rate and CRP - I've gotten this checked so many times in the past 1.5 years. Since the initial Dx, my rates have been decreasing toward normal, but at a very slow rate. I've now been hovering at a 10-15 SED Rate (MM/HR) and a 11-16.5 CRP (mg/L) and my second MRI Enterography done Sept 2009 showed "significant improvement" but still isn't "normal".
My doctor doesn't think Pentasa is enough. He has pushed 6-mp since the beginning. I did try the 6-mp for 3 months last year but stopped because I wasn't comfortable taking it to begin with. I want to take care of myself and I feel like I'm doing a good job but these tests are telling me otherwise and it's making me nervous. I'm comfortable taking Pentasa and with that I take daily probiotics, Omega-3 fish oil, turmeric and a multivitamin. I'm not comfortable taking any of the other drugs at this moment in time....
Do I really have any other options??? I'm being told I'm sick, but I don't feel sick - I feel helpless. Part of me doesn't want take any medication because I feel okay, but I know there is inflammation so I've stuck with the Pentasa.
Dx Crohn's May 2008
1000 mg Pentasa 2x / day
Probiotic, Omega 3-fish oil, turmeric, multivitamin