Good question browneyedgirl? Wish I knew the answer, but it seems I've heard that too.
Poobear- I don't know if you are stateside or not, but if it were me, I would consider trying to get an appointment with the Cleveland Clinic or I believe there is also a Clinic in Florida that is highly known for treating this kind of GI problem. Sure sounds like CD to me. It took me 5-6 years to get my diagnosis because I thought all my symptoms were related to peri-menapause and kept going to a GYN that thought I was crazy to think I was even in that stage of my life. Guess what, I was, I am and that is in addition to the CD. Hang in there and don't give up! If your finances are an issue, you may want to consider some of the studies offered by educational/hospital institutions such as the Cleveland Clinic as well. They usually pay not only for your treatment but your travel and hotel stays as well. On the HW homepage there are resource links that give you the current "open" medical studies available and who/where to contact. I know this is a route that many do not support but it is an option to be considered. I once had to take my daughter every 3 months to NIH in Bethesda, Maryland for treatment for a non CD related medical problem and now that she's 29 and looking back, I'm so glad I did. Her condition was rare and we could not find medical support in my regional area. While a hospital that big is intimidating at first, I could not have found more caring and supportive people in my time of need. Good Luck to You, We are always here!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.