Boxermom

     My GI doctor sent me to the Univ of Pa Hospital to see a Dr. Gary Lichenstein.  He's supposed to be "world reknown" or something to that effect..lol.  Well, he didn't suggest anything different than what my GI had been suggesting.  This was pre Remicade.  So, I did do the Remicade and you know from my posts....no luck.  Now Humira...nothing so far.  My GI doctor mentioned Cimzia...but why?  They are all biologics.  I was thinking maybe the Humira would work since it is made from human protein, I believe Remicade is made from animal or mouse protein (I forget). I have a very strong immune system (or so says my GI doctor) and it fights all this stuff.  He doesn't want me on the 6MP along with the biologic for fear of a much greater risk of cancer.  Probably due to my age.

     Wouldn't that be great!!!  To be honest with you, surgery scares the crap out of me...no pun intended.  The colorectal surgeon I met with two years ago following my ten day hospitalization really wasn't keen on me getting the operation at that time anyway.  I was really sick then too, maybe even sicker because the pain from my rectum was radiating into my vaginal area, into my groin and down into my legs to my knees.  I had to take hydrocodone just about daily.  My gyn doctor wouldn't even do a PAP smear because she said I was too inflamed.  I did go back two weeks later and she performed it, thank GOD it was ok.  It took seven months to get out of that flare and I was on prednisone the entire time.  Then I had a seven month remission...no symptoms at all...sheer heaven.  But, then we went camping.  We had a seasonal spot at Hershey, PA.  I believe we were going out to eat too much and I was eating spicy...Italian food a bit too much and bam...started flaring around Memorial Day last year and it has been almost constant ever since.

     Well, I will be glad to meet with this surgeon Tuesday.  Tomorrow I will write down a list of questions I want to ask him.  Then Wednesday I have an appointment with my regular GI doctor.

     It takes a long time to get an appointment with Dr. Lichenstein.  Do you have any idea when you will meet with him?  My doctor mentioned cyclosporine but he doesn't have much experience with it.  He said Lichenstein did.  You think you would try that?

      The doctor never mentioned Entocort.  Is that a steroid?  Way back in 98 when I was first diagnosed, he put me on Asacol.  Stupid me, I thought when I achieved remission I could go off the Asacol.  For two years, no meds, then I flared and he put me on Colazal in place of Asacol.  This time I stayed on the Colazal.  I probably am immuned to it by now but the doctor thinks that is what is saving the rest of my colon from being inflamed.

Sorry to interrupt but I thought entocourt was used for Crohn's in the termninal ileum and therefore was not suitable for treating UC?

     I'll mention it to him on Wednesday.  He's not going to be a happy camper because he wanted me off the prednisone by my appointment but I started bleeding when I cut down to 10 mgm two weeks ago, so I increased my dose to 12.5 mgm for that week and then cut down to 10 mgm last Wed.  So far, no bleeding, but still that terrible urgency and cramping.  I figured this Wed to cut down to 7.5.  I'm just soooo disgusted plus my nerves are SHOT!  My insides feel like they are on a roller coaster, spasms in the rectum and stomach.  Don't know whether this is due to the prednisone taper or just anticipating surgery or the combo.  Driving in the car with my husband today...going through traffic...I was oooo..watch out..oooo....I thought he was going to tape my mouth shut and put blind folds on me.

I thought entocourt didn't work for UC (I understand that you can still use it even if it's not "for" UC). I know it's given long term but as Sue said, I'm not sure how good of an idea that is. Although if it's a short term alternative to pred, it would be useful to know that.