I'm so tired of battling this disease lol.
So to bring up to speed... last time I went in he didn't believe I even had UC because I was in remission... but because of the symptoms I reported after tapering off of prednisone he decided to do a flex sigmoidoscopy. He said I have active UC up to 30cms. He put me on Rowasa and 50mg of 6mp..keeping me on the Lialda.
This visit I told him my symptoms yet again... and he said I knew you were going to be a tough case. So he suggests pred. and I tell him that I refuse.. I just don't want that for myself again. Plus every time I take it..I taper off and am immediately in a flare again. He said well there's not many options.. this whole time pushing that if I got surgery the disease would be gone. So then I said..what about
Remicade? He said it was an option, but we'd have to get it approved by my insurance. I said well then by all means lets go on Remicade. So then he says it will take 3-5 days to get approval and within a week after that to get the first infusion. I said shoot and I'm going on a cruise... he goes a CRUISE? I said yea next friday and he goes.. that's not a good idea. You'll have to be on pred. I said no I refuse...what about
steroid enemas? He said we could try those, but he prefers pred. He said that it's possible if I let it get worse to get Toxic Megacolon and have to go to the hospital.
So my first infusion will be after the cruise.. we can't get a refund from the cruise or I wouldn't go.
He's upping my dosage of 6mp to 100mg, which makes no sense to me if he's just going to pull me off of it after the first infusion. Plus I'm scared it will have negative side effects at such a high dosage. And he's switching me from Rowasa to Steroid enemas.
My husbands scared about
the side effects of Remicade...and honestly so am I, but I want remission.. I want it soon..not in a few months. I've heard a lot of people on here go into and stay in remission on Remicade.
btw.. I also asked him if my black stool was from any meds I was taking.. he said it was worrisome of an ulcer or it could be old blood coming down.. He tried to do a rectal exam, but didn't have any stool to see the color. Btw..oddly I didn't feel as violated as my first time getting a rectal exam. I think because I knew what to expect and I've had so many other things stuck up my butt by now LOL!!!!!!!!!!!!!!!!!!!!!!!
Kara, 22F Married. Latest - Lialda 2 twice a day. Left Sided Colitis 40cm up...flare. Also IBS.
Medications: Lialda 2 twice a day, Align probiotic, Hyomax as needed, 6mp 50mg a day, Rowasa enemas.
I am so sick of this disease!
Post Edited (sweetmelody) : 7/11/2009 10:15:07 PM (GMT-6)