Hey, I'm new, I'll jump right in.
Backstory: I'm 23, married 2 years (young, I know!). I was dx'ed in November of 2006 after being misdiagnosed with Celiac in Feb of '06. (I'm one of the lucky (
) IBDers who is fat as opposed to skinny, confusing the entire medical community). I started getting sick in fall 2002 after a nasty case of mono. I'm lucky, I haven't had any surgeries or obstructions, and I guess I'm fairly mild compared to tons of other people out there.
I started out on Pentasa, which didn't work, then made the progression to entecort then Remicade in February. I more or less refuse to take Prednisone unless it's life and death because the side effects are so bad. I started on a 5 mg/kg dose every 8 weeks on Remicade then got upped to 10mg/kg every 6 weeks, but that gave me the lovely lupus-like issues so I'm scooting back to 5 mg/kg every 6 weeks and we'll see if it gets rid of the joint pain. Remicade works about 60% of the time, and I'm on a cocktail of symptom-stoppers like bentyl, phenergan, lomotil, and I don't even know what else anymore PRN. As mild as my disease is, it refuses to go into full remission.
I also apparently have sacroile...sacroiliit...you know that thing where the joint where your spine and your hip is inflamed because the inflammation spread from your gut to your back? That thing.
At my last appointment my GI suggested that I try to get pregnant as soon as not disastrous for us, which is pretty much now through spring. Since I appear to me walking a fine line of tolerance for Remicade, and he doesn't want me on any of the 6MP or methotrexate until after pregnancy, or at least for as long as possible. Basically get pregnant before disaster strikes and either I need surgery or the Remicade stops working entirely, since he's had a lot of success with patients on Remicade while pregnant.
Oh, and if I decided to stop the remicade, my GI and OBGYN both agree that I'd have to be on steroids pretty much throughout pregnancy, which I'd rather avoid.
DH and I are on the fence about whether to try now or to wait for another 2 years as we had originally planned. I'm terrified of either option, and I don't believe in IVF or other assisted reproduction personally (it's cool for anyone else, I can't reconcile it for my own self, though).
Has anyone else been told anything similar by their doctors? TIA!