Posted 8/10/2009 2:12 PM (GMT 0)
Hi,
Hope this isn't too many questions in one topic. I was just diagnosed with Crohn's last month. It was quite a shock for me (as I'm sure it probably is for most people), because I never really had symptoms previously. Sigh...anyways, it has taken some adjustment to get used to the fact that I have a chronic disease, and that I have to be on medication, possibly for the rest of my life. I never used to take any kind of meds, unless absolutely necessary, because I was always afraid of how they may be affecting my body.
Anyways, I was started off on Prednisone, which I'm tapering off of now, but it didn't seem to help all that much. I have a lot of the extra-intestinal symptoms, and because I kept having to go back to the hospital since my symptoms were not getting better, my GI wanted to start me on Remicade. I was not thrilled about the rare but possible side effects, but I felt so terrible, that I was willing to try it. He also put me on Methotrexate to help prevent me from developing antibodies against the Remicade. Well, thankfully, I responded really well and immediately to the Remicade. Within a couple of days, I felt a huge difference, and now, knock on wood, I feel like I have my life back.
I'm so thankful that Remicade has worked for me, but I'm still concerned about what it may do in the long run. I also would like to get pregnant sometime next year, and the Rheumatologist said I shouldn't be on either medications when I try to get pregnant. My GI doctor said we'll talk about it in the future, but he's very pro meds and wants me to stay on the Remicade during pregnancy. (I know for sure I can't be on the Methotrexate).
So...I've read a lot about the Maker's Diet and how it's helped people put their Chron's in remission. My question is, for those of you who go on the diet and go med free, do you have yearly colonoscopies, or how do you know that your colon is free of inflammation? I've heard that sometimes you can be free of symptoms but still have inflammation. Also, how long does it take to be on the diet to start healing, and if you're on meds, how do you know when the diet has kicked in and it is OK to try and taper off meds?
Last question, I'm afraid if I go off Remicade during pregnancy, that I won't be able to take it again afterwards if I need to. Does anyone have experience with this? And is it true that if you get off one biologic, that the others won't work for you? I'd hate to ruin my chances of remission, but I don't like the idea of being on meds while I'm pregnant.
Sorry for the long post, thanks for those who read it, and I'd love to hear suggestions.