Hi, I was in my 20s and in law school when I developed UC, in 1985 or so. I think it was caused by Accutane. It took me a while to figure out how to manage things, what to do and not to do. But here I am more than 20 years later, coping pretty well ~
I had never "met" anyone with this disease until I checked out this forum. It is surreal to hear people experience exactly what I have. Sometimes I read posts to my husband in amazement, and sometimes it makes me cry! I thought I was the only one who dreamed about
finding a bathroom!
I choose not to tell people I have this, only my family knows and one or two old friends from "back home." My friends just think I have a small bladder, because when out shopping or playing golf I have to use the bathroom a lot (and I'm very good at sneaking off to go real quick). They don't need to know the details.
My situation: Since I did the food sensitivity testing and stopped eating everything I tested sensitive to, (I tested highly intolerant to gluten, for example), I think I can say, for the first time in years, I am in total remission! No blood at all, which is absolutely amazing. Who knows when I developed the gluten problem, I know I still have this disease, but it helped me.
I know prednisone sucks, but I still turn to it because it works. I also find the Rowasa helps some, but it disrupts my sleep so much that I avoid it unless I'm really suffering. I've been on asacol since before it was approved, but I've not tried a lot of the newer meds people mention here, my doctor has said they are not worth the risks for me, but we haven't talked in a while so I don't know what she is doing with patients these days (after all this time, she pretty much calls in my asacol, prednisone and rowasa whenever I ask for it).
When I am going so often it disrupts my day or my sleep, I take one-half an immodium, not enough to block me up but enough to calm things down. More will make you feel worse because you will want to go but can't. Ask you doctor about
Feel good, I hope it helps to know you are not alone!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day.
tapering OFF prednisone from lingering flare;
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet which resolved flare. Also Replete probiotic, DGL (licorice root, slippery elm), Permeability Factors. Slow-release iron and B-12 shots for severe anemia.
Sept: Mild case of thrush in throat, prescribed antifungal mouthwash.