I am a 24 year graduate student and have had active UC for over 10 years which I am now starting cancer screenings. I have been on Remicade for over 8 years and have received it in 3 different countries. What I hope other UC suffers will take from this is that you can still live your life to the fullest with UC. You can’t look at anything as a limitation. Do what you love no matter what! Also, stay on top of research being done about Ulcerative Colitis. Being informed will make everything less scary and will allow you have really productive conversations with your doctor.
Some more about me:
Despite UC I played varsity in two sports in high school, went to the college of my dreams and graduated with a degree in architecture. Studied abroad for a year in London and Florence and Japan! And actually received my Remicade infusions at hospitals there! I’m now in grad school and will actually be making it to present at a conference in Greece. I am also an avid scuba diver and an hiker. I’ve hiked in the Adirondack Mountains, Ireland, and Mt. Fuji.
10 Years of Colitis and Going Strong
I was also diagnosed in 2001 with severe pan colitis as well as Autoimmune Hepatitis (my immune system also attacks my liver but luckily that went into remission in 2002). I made it through a toxic reaction to 6MP, being on 20 mg a day of prednisone for 3 years (subsequently becoming prednisone dependent) and not having methotrexate work by itself. I still have a slight moon face and a little hump on my back (the effects of prolonged steroid use).
I finally made the decision at in 2004 to start Remicade (it wasn’t even approved for UC yet!) I was able within a year to get off prednisone and with 4 to get off methotrezate. And I have been on it for 8 years at 5 week intervals and this past year finally went in to remission. However, we tried to bump my infusions out to 8 weeks which brought the UC back. We’re doing the Prometheus Anser IFX test to make sure I still don’t have remicade antibodies, going back to 5 weeks and hopefully getting my UC back into remission! This a new blood test, so for anyone having problems on remicade should talk to their doctor about it. It’ll tell them how you metabolize the drug. Since I hit the 10 year mark of an active disease I have started cancer screenings which I feel everyone hitting this milestone should discuss with their doctor!
And for all those pasta lovers like me, try Dream Fields Pasta! It has a low glycemic index. Other recommendations that have worked for me…stay away from artificial food dyes (especially red and blue), anything with lots of preservatives (I cook fresh daily), and I avoid beer and alcohol.
Also, a tip for the women try birth control. There are new studies that are trying to establish a connection between the hormone changes during your periods and flare ups. Limiting the amount you have can dramatically help your flare ups. I made this switch about a year before I went into remission. I can’t definitively say that’s what made the difference but I do believe it helped. Talk to your OBGYNs.
Here’s the article: “The menstrual cycle and its effect on inflammatory bowel disease and irritable bowel syndrome: a prevalence study.”
20 mg prednisone a day for 3 years
Folic Acid (should be taken if you’re on methotrexate and a want to get pregnant sometime in your life as MTX blocks the absorption of folic acid which is vital for a healthy pregnancy)
300mg Remicade every 5 weeks
Vitamin D, Vitamin C, Calcium, as well as a multivitamin
Jolessa (Birth Control)
written by Angela
submitted in the colitis venting area