Hello all! My name is Randi and I have UC. Ok, let’s rewind a little bit. I am 20 years old, proudly from Minnesota and I was diagnosed a little under two years ago while I was in culinary school. Also, I love pugs with my whole heart. No shame, they’re freaking cute.
My fellow UCers know the drill… Frequent bathroom visits, blood, mucus, gas pains!! I also have significant joint pain from the remicade. Currently, I am in the middle of a flare up. One of my worst. I am getting remicade every 4 weeks paired with Imuran and asacol. I am afraid that a prednisone taper is in my near future as well. I don’t know about the rest of you but I get the WORST gas pains later in the evening, around 8 pm. My symptoms seem to be elevated in the morning tenfold. I had my gallbladder removed a few months ago which made my Ulcerative Colitis worse because there was nothing to help break down my food.
I am a certified chef and I work in a setting that teaches special needs teenagers and handicapped adults how to cook! I LOVE my job. Due to my UC I had to quit the restaurant scene, hardcore chefs weren’t really enthused with my frequent bathroom visits… Even though the culinary world and UC don’t match up too well, I am happy to be in the field I am today.
I was 18 when I was diagnosed with UC. At first I really didn’t think it would be a huge deal. One quick round of antibiotics and I would be fine!! Right? Think again. It took a few weeks of doctors visits before I was referred to a specialist and was immediately diagnosed. I started a serious course of prednisone, rowasa enemas and asacol immediately. After about 5 weeks I felt so much better! Instead of running to the bathroom 15+ times a day, it was down to 2. I hadn’t remembered feeling that well in a long time. I stayed in remission only for a few weeks before I was hit again. I was started on an even more serious dose of prednisone, and I was in remission in just a few weeks. The longest I have ever been in remission for is 4 months. In a matter of a year, I had 4 colonoscopies to try to see just how far my UC had spread. The last colonoscopy revealed that it is most likely Ulcerative Pancolitis and 2 polyps were found as well. It is scary to hear, but I can’t change my outcome or this path so you just have to take it in stride. I have tried the SCD diet, but with my profession, sticking to it is nearly impossible. I also don’t have the best support from the fam. They just don’t understand how debilitating this disease can be- not only physically but emotionally and mentally. The biggest part is that they are trying, and that means the world.
Anyone follow the SCD diet? If so, any tips? Please tell me what you would normally eat in a day, as an example!!
Where I’d Like to be in 1 Year:
Fully committed to the SCD diet and in remission.
Remicade- started as a miracle drug. The positive aspects are slowly disappearing.
Imuran- Paired with the remicade it seems to work well. I am currently on a remicade, imuran cocktail with minimal luck.
Asacol- 4 pills 2 times a day.
Prednisone- Disliked this pill more than anything. I got a moon face like you have never seen. I also had a huge problem with hair loss and significant weight gain on this one as well.
written by Chef Randi
submitted in the Colitis Venting Area