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How to become a loud, proud advocate for people with ulcerative colitis

When Brooke Bogdan was diagnosed with ulcerative colitis, she and her family decided to stand up for other people with UC.

When I was diagnosed with ulcerative colitis (UC) in 2012, I sensed my life was going to change drastically — and not just because of the everyday work of managing my symptoms. My feelings were confirmed when I was admitted for my first long hospital stay, during which I learned I had pancolitis, a form of ulcerative colitis that affects the entire large intestine, or bowel. During my week in the hospital, I researched medical journals as well as blogs by other people with UC, to learn more about the illness from a patient’s perspective.

When I got home, I ordered books from Amazon (Patient Heal ThyselfThree Tablets Twice Daily) and quizzed my primary care doctor. After educating myself further via websites, I realized that my colitis crisis had sparked a desire to spread awareness.

I am blessed to have the most amazing friends and family, who were all there for every hospital stay, infusion, test, and scope. My dad made sure I had all the medication and supplies I needed. My mom drove me to every doctor’s appointment and would hang out in my hospital room watching Ellen and her favorite soap opera with me. My sister Madelyn would hold my hand through the most painful days and make me laugh, while Peyton, my youngest sister, would keep me company in the hospital and help blow-dry and brush my hair. Both Madelyn and Peyton have always been there for the kind of support you can only get from sisters. All my best girlfriends kept my spirits up, too.

About one-month postdiagnosis, the responsibility of having a chronic, little-known illness hit me hard. Making sure my medication was refilled, that I was taking it at the same time every day, scheduling regular doctor appointments, driving to the hospital for my infusions — this was a lot to handle. But I also felt a strong need to self-inform, educate, spread awareness by writing, participate in fundraisers, and be vocal and open on social media channels and my blog, Fierce and Flared.

Because my family and friends were so closely involved in my journey with ulcerative colitis, their desire to advocate was tenacious. My aunts, uncles, and grandparents got involved in any way they could, even if that just meant donating money or informing their circle of friends and coworkers about UC.

Speaking Out Through the Sickest Days

My UC eventually became impossible to live with. About two years postdiagnosis, in 2013 and 2014, I had ileal pouch-anal anastomosis (IPAA) surgery, a series of three operations that involved the complete removal of my colon and rectum and the construction of a J-pouch.

Throughout my sickest days I felt even more ambition to advocate, even if that meant simply sending a tweet about how I was feeling or words of encouragement to a fellow UC patient.

Three months after my first surgery of the IPAA series, the central Ohio chapter of the Crohn’s and Colitis Foundation asked me to speak at their annual fall fundraiser. I was on the board for that event, and my employer at the time was an event planner. She and I were extremely close. She donated a lot of time, assets, and energy into decorating and making sure the event looked beautiful and memorable. A former coworker of mine was kind enough to bake specialty cupcakes for the event. My dad helped me fine-tune my speech, and my mom, aunt, boss, and friends were all there for support.

I’ll never forget that night and the impact my words had on the 200 people in the room. I had such a strong feeling of pride and support. Looking around, I saw that so many people had tears in their eyes. When my speech was finished, I received a standing ovation.

After the event, I stayed and talked with people who had stories and challenges of their own. I remember one man in particular, older and very tall, who sat and cried with me as he told me about his son who was really sick with ulcerative colitis. He told me his son refused to discuss having surgery, then asked if he could give his son my contact information.

It was at that point I realized how much of an impact I could have just by having personal conversations with other patients and their family members and friends. This gentleman was so visibly moved by what I had to say and the advice and solace I was able to give him.

Keeping the Volume Turned Up

This energy has continued to inspire and motivate me to do my best to answer every question, email, and social media request. That night shifted my priorities and opened my eyes to a perspective I am so thankful for. There are so many people who are suffering in silence and confusion. I truly believe that everything happens for a reason, and my reason for having ulcerative colitis is using my strong voice to make an impact. I will never turn down the volume. I’ve had the most beautiful opportunities to meet so many people, and helping others who cannot help themselves is what gives meaning and purpose to my life.

My family continues to donate time and money to the Crohn’s and Colitis Foundation. I blog, write social media posts, offer support to fellow patients and their family members, and talk with my coworkers and friends about ulcerative colitis. I learn something new about UC every day, and that’s because of other people like me, those of us who have chosen to take the route of standing up and being loud and proud in their advocacy for people who “don’t look sick.”

I have found that advocating helps educate me in ways that go beyond patient materials from a doctor or hospital. We live in a world where people have access to anyone and anything via the internet, so other patient advocates that I follow have helped me understand what ulcerative colitis looks like for others. Ulcerative colitis is going to affect each person differently; no one is going to have the exact same story. But sharing what you can about your journey may help others find answers to their questions. There have been countless times when I was able to offer a missing puzzle piece for another patient, and vice versa.

“I Think You Have Saved My Daughter’s Life”

During the summer of 2018, a mother reached out to me via email because her daughter had recently returned from a trip to the Dominican Republic and was now in the hospital. Doctors were treating her daughter for ulcerative colitis, but biologics and steroids weren’t working. My own ulcerative colitis was made worse by parasites I had contracted in the Dominican Republic that went undiagnosed for six months. This patient’s mother had read a blog post I’d written about my experience with parasites and how they affected my UC. The parasite I had that was tough to find in tests is called giardia. According to the Centers for Disease Control, giardia is a microscopic parasite that causes the diarrheal illness known as giardiasis; it is found on surfaces or in soil, food, or water that has been contaminated with feces from infected humans or animals.

My father and I wrote this patient’s mother an email telling her what specific tests to ask for to check for giardia. About a week later, I received an email back that gives me chills to this day:

Brooke, we are still in the hospital. I made the doctor read your email and after much insisting, fighting, and reminding, we finally got [my daughter] tested the right way. The labs just came back positive for giardia. I think you have saved my daughter’s life. She was not responding to the highest dose of steroids they could give her, she is unable to tolerate IV nourishment, and she is wasting away before my eyes. I thank God for the courage and determination he has instilled in you. Thank you for sharing your story and for answering my email.

Read full article by Brooke Bogdan here.

Posted on: November 14 2019

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