Ulcerative colitis (UC) can be described many ways through a variety of symptoms, but only those who live with it every day know how detrimental it can truly be.
At first, the pain was terrifying. Coupled with the large amounts of blood I would see in the toilet, I knew something was very wrong. Yet I didn’t tell anyone. My father, who is a physician, watched in confusion as I began to rapidly lose weight. My friends would stare with fear as I would run to the bathroom countless times a day.
I hid what I was experiencing from everyone, too afraid to admit the severity of my suffering and how it was affecting my fast-paced life. Looking back on this now, why didn’t I tell anyone? Why was I so afraid to seek help or to tell the truth?
I think I was afraid because I knew in the back of my head how much my life was about to change regardless of the ultimate diagnosis. All the extreme pain, the blood loss, the fatigue, the inability to eat, the nausea that was impossible to ignore — it all had to mean something bad. Something that I wasn’t going to be able to handle, right?
Now, five years after that initial sharp pain in my abdomen, I spend my days trying to help those who are first diagnosed with UC or Crohn’s disease understand how important it is to share their initial symptoms with a family member, friend, or co-worker.
The first piece of advice I give to anyone that comes to me seeking guidance is that you are stronger than you think. In my weakest moments, when I couldn’t get up off the bathroom floor, when I was shaking in pain, I was actually becoming stronger. I learned and continue to learn more about myself and life from my UC than any class in school could have taught me.
When I was first diagnosed, before I even knew what UC meant for myself and my family, I was uneducated on the disease and how much it would truly change our lives. My first GI doctor (gastroenterologist) was terrible all around, and didn’t help me to grasp the importance of educating myself on inflammatory bowel disease (IBD). I knew nothing about treatment options, diet, or lifestyle changes that needed to take place. Surgery outcomes were never even mentioned. No one told me to read blogs, books, pamphlets, anything. I thought that I could continue living my life as a 23-year-old bartender working 18 hours a day.
Once we found another GI doctor who would ultimately save my life, my UC had rapidly become what he would tell my family and I was the worst case of UC he had seen in 25 years.
Over the next year and a half, we tried everything to ease my suffering. I tried every biologic, every steroid, every immunosuppressant, every home remedy suggested to us. My father even inquired about drug trials, but by the end of that year and a half it was too late.
“Too late” meaning that 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?
As soon as we returned home from the hospital that day, I immediately went online. I started reading blogs and social media posts from girls who had met the same fate, but with a better attitude. 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.
Now, my life with a j-pouch means less suffering, but the importance of staying educated will never subside. I take everything my team of doctors tells me, and I share it with the world. I never want anyone who is diagnosed with IBD to feel alone or confused. I want every patient and family member to know that there are so many people out there who are willing to help and answer any questions they might have. I went through my challenges for a reason. I learned the hard way so that I could help make others’ lives that much easier.
I manage my condition today by listening. I listen to my body when it tells me I’m too tired to go out after work and have dinner with friends, I listen to my doctor when he tells me I need to watch what I eat and work out a little more, I listen to my family when they tell me that I don’t look my best.
Rest is so important to any patient, regardless of the stage of diagnosis that you are in. It’s tough to slow down, but understand that rest will help heal you. Education is also essential. 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.
Even today when I am feeling a symptom that is strange, I look to those who’ve mentored me through my journey. I ask questions, and then I take those experiences to my doctor and ask his opinion.
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.
Brooke Bogdan was diagnosed with ulcerative colitis at age 22 after returning from a vacation during which she caught two different kinds of gastrointestinal parasites that went undiagnosed for six months. When the parasites were cured, she was left with severe pancolitis. In the early summer of 2013, as a life-saving effort, Brooke had her colon removed. She underwent three laparoscopic surgeries. Brooke now lives in downtown Cleveland with a j-pouch. She works at Studiothink as a digital account manager and lives the most normal life possible. Brooke founded Companion Magazine for IBD in 2013 and authors the blog Fierce and Flared.