39, Male, diagnosed with UC in 2007, my mother has UC and had her colon removed and colostomy bag in 2006. Blue collar worker, enjoys being outside, Mt. Biking, hiking, kayaking, spending quality time with my 18 month old daughter. All things seriously compromised by UC.
First off, thanks to Adam for the site.
I had never heard of UC until my mother was diagnosed in the early 2000’s. She dealt with the symptoms and treatments for 6 years until deciding to have her colon removed. She tried for a J-pouch, but there was an after surgery infection, so she now has a bag. Somewhere in that time we read that UC is passed down genetically from the maternal side(can anyone confirm this, it would ease my mind about my daughters chances.) So when I began having the bloody stools, violent- and I mean violent, some funny stories there- gas, bloating etc. I had a good idea what it was. Colonoscopy confirmed, I cannot drink lemonade to this day because the prep meds were supposed to be that flavor, blahh.
First treatment was Asacal, 2 pills, 3 times a day, which brought the first flare under control. I didn’t realize the monster I was dealing with, so after that prescription was up, I quit any medication, and did not return to Dr. until…
1 year later, 2nd flare same symptoms, but Gastro DR switched me to Lialda, 2 pills in the morning which worked great for almost 2 years…
I am now having another flare. Still on Lialda but I have begun taking VSL#3 one capsule twice a day, and trying to watch my diet (quantity seems to be as important as anything,) and it seems to be making things better, but it is just not going away. so…
I have another appt. with the ol’ Gastro Dr. to see what she can do. I know from my mother and wife the effects of Prednisone, and would like to avoid it if possible. I am curious about budesonide, anyone have experience with it?
One of my biggest problems/hang ups is talking about this with other people, I am already a fairly introverted person, and it is difficult to explain why I cannot do the things I used to.
Ohh, and fried food, as much as I love it, kills my gut. And that makes me sad.
Where I’d Like to be in 1 Year: