Ulcerative colitis is a chronic inflammatory disease that affects more than 1 million Americans. Brooke Bogdan, founder of Companion Magazine for IBD, shares her story in hopes of raising awareness and helping others understand that they are not alone.
While returning home from a vacation in the Dominican Republic, Brooke began to experience painful abdominal symptoms. “I will never forget the night the symptoms first began. I was working as a bartender at the time which included late and long hours. That night, I remember feeling a sharp pain in the pit of my stomach, with nausea that was impossible to ignore. As time went on and my chronic abdominal symptoms became worse, we decided to see a local gastroenterologist. After completing multiple stool samples and lab tests with no findings, I was diagnosed with ulcerative colitis after a routine colonoscopy,” wrote Brooke.
Extreme symptom progression
Brooke spent the entire summer of 2012 suffering from severe symptoms. She had been making frequent trips to the bathroom, feeling crampy, and sleeping very little at night. She had low energy levels and quality of life begin to deteriorate.
In September of 2012, she needed to be admitted to the hospital for two different types of gastrointestinal parasites that she had caught during her trip, but remained undetected for 6 months. “When my doctor arrived at the hospital and told me I would be in there at least 4 days, I was in shock. But there was hope that I would improve if the parasite was eliminated. After my blood work and labs were drawn, I found out that I needed to have a blood transfusion as I was anemic from all of the blood loss. I was severely malnourished and had basically no protein in my body. During that first stay in the hospital, I had a repeat colonoscopy which demonstrated progression of my ulcerative colitis, and a blood transfusion for the first time in my life. I had to take 4 very strong pills that made me extremely sick to kill off the parasite, and my first long term IV PICC line implanted in my main, left arm vein. I was started on Remicade, a powerful medication used to combat inflammatory bowel disease by altering your immune system and 6 MP, a chemotherapeutic agent and immune suppressant. I was also on high dose steroid and TPN which is IV protein and lipid nourishment, all while dealing with the fact that I had been diagnosed with the worst cast of pan colitis that my GI doctor had seen in 25 years,” she wrote.
Preparing for the unexpected
Throughout this difficult time, Brooke tried her best to cope with her disease and the symptoms that it presented. She tried every type of steroid, biologic, immunosuppressant, and home remedy recommended to her. Her father had even asked around about new drug trials and the possibility of Brooke’s participation. Brooke explained what happened next. "By the time I met my surgeon, I was days away from bowel perforation. I had three days to cope with the fact that in addition to undergoing a surgery to remove one of my organs, I would be living the next year with an ostomy, which I knew nothing about. That ignorance led to anger and anxiety. Why hadn’t anyone prepared me for this so that I could properly prepare myself?” she wrote. As soon as she returned home, Brooke went online to inform herself about living with colitis. She began reading blogs and social media posts from other girls who had been going through the same experiences. “I remember reading an article authored by a young woman with Crohn’s. She was living her life with a permanent ileostomy and was so thankful for it. Her story instantly made me realize that I was blessed to be in the position I was in. She inspired me to continue reading and to start writing to help others the way she had helped me,” wrote Brooke.
Recovering after surgery
After undergoing surgery to remove her colon and getting an ostomy, Brooke felt as if she had gotten her life back. It was one of the hardest things that she had to undergo, but she felt better than she had in the last two years. “I decided that I could sit and feel sorry for myself or I could try to help myself by helping others. I wanted to make the best of the time that I had with my ostomy and my surgeries. I looked at it as an opportunity to learn about myself and others. Today I can confidently say that there is nothing that I am more proud of than my ostomy. I searched for the nearest local CCFA chapter and immediately began volunteering after my first surgery. Through the CCFA, my writing and the creation of Companion Magazine, I have healed myself and am finally healthy and happy,” she wrote.
Brooke’s life with a J-pouch meant less severe flare-ups and suffering. “I go out with my friends, I go on dates, I work a full-time job that I absolutely love with co-workers and a boss who are so supportive, interested and understanding of what I have been through. I have had a few bumps along the road, including cuffitis and iron deficiency anemia, but I know that life with my J-pouch is so much better than the way I was living with ulcerative colitis,” she wrote.
Being your own advocate
Brooke encourages you to listen to your own body and resting when needed. Rest is crucial part of therapy – regardless of the stage of diagnosis. Being educated on the subject of IBD is vital. “Being an educated patient means being your own advocate. The best places to get information on UC or Crohn’s disease? Blogs or articles written by other patients. Read the blogs that are positive, that don’t scare you, that are informative and that you can relate to. People in the IBD community are the kindest, most generous individuals I’ve ever known. I’m so grateful to have such an incredible support system that is only one click away,” she wrote.
Ulcerative colitis and Crohn’s disease are not easy to live with. They can make any individual want to hide in their home and away from the world. The symptoms are inexplicable, the anxiety is haunting, and they can make the ability to live a normal life seem impossible. However, Brooke stresses that having a positive state of mind is one of the most important things when it comes to coping with IBD. Moreover, she emphasizes the importance of living each day like it is a gift. “These days I feel incredible. I live a life that I was afraid of losing, and that’s because I stayed strong even though I was afraid. I manage my lifestyle by the same rules I founded five years ago: I listen even though I’m stubborn, I rest even when I want to be out and about, I research when I’m unsure, and I share when I find the answers,” she wrote.