I had such a great time at the Cookies, Cupcakes, Cocktails and more event for the Crohn’s and Colitis Foundation of America. I spoke at the event in order to raise money for the “fund the mission” portion of the fundraiser, so that attendees could donate large sums of money to the foundation that would not be taxed.
After I was done giving my speech, I had a standing ovation which was incredible. It’s a memory that will be etched in my memory forever. All of those people, crying and listening so intently to what happened to me. It helped me realize that my suffering was not in vain.
I met so many great people because of the event. After my speech, I had countless people come up to me and tell me that my story changed their perspectives. I ended up helping the foundation raise about $18,000 with my story alone, which feels so great. It has always been my main goal to help people that have suffered as I have.
Thank you to all of the vendors and supporters of this event. Without all of you, events like this wouldn’t be possible.
For more information on this event, please visit the CCFA website at ccfa.org.
Below is my speech that I read at the event:
This is such a big, beautiful room. It is so beautifully decorated and put together. Does anyone know where the bathroom is?
Thank you all for attending the Cookies, Cupcakes, Cocktails and more for the Crohn’s and colitis foundation of America. Only 6 short months ago, where the nearest bathroom was located was my biggest concern upon walking into any room, restaurant or friend’s house. My name is Brooke and my journey with ulcerative colitis has been a difficult one, but one that has taught me compassion and perspective.
I began feeling symptoms of gastrointestinal discomfort in April of 2012, a month after I returned from a vacation of a lifetime in the Dominican Republic. 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 and we decided to see a local gastroenterologist. We informed him that I had been out of the country recently. After completing multiple stool samples and lab tests with no findings, I was diagnosed with ulcerative colitis after a routine colonoscopy.
I went through the entire summer of 2012 with symptoms of Ulcerative Colitis. I was constantly crampy with an impending urge to go to the bathroom. I slept little at night due to my job hours and frequent bathroom trips, and I was trying to sleep during the day. I felt like I had no energy and my quality of life was horrible. I remember feeling so confused and scared. I was very uneducated as to what UC was and how much maintenance it truly required.
In September I was home visiting when I had a few days off work. I had found a new gastroenterologist who was compassionate and very knowledgeable about inflammatory bowel disease. I was getting ready to drive back to Columbus on a Friday when my mom came home and told me that I was being directly admitted to Aultman Hospital. I needed to go to the hospital in order to receive IV treatment for a parasite that had went undetected for almost 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.
Throughout the year that followed, I did my best to cope with my severe UC. My family and I tried everything to find relief from the pain and suffering I was experiencing because of my disease. My father, who is a physician, even chased me around my house with an electronic cigarette and nicotine patches insisting that it would help ease my symptoms. Though I didn’t take up smoking, I completely changed my entire lifestyle, diet, sleeping habits, everything. I was experiencing 15-30 bloody bowel movements all day and all through the night. Every 6 weeks I would go to the hospital for my Remicade infusion and would feel a little better, but not much. I became severely immunodeficient due to the 6-MP, which could have easily resulted in life threatening infection, and this medication was stopped.
I experienced a short lived semi remission state for a few weeks in the winter of 2013 where my bleeding and frequency improved, but the worst was yet to come.
I began my downward spiral this past spring. I was suddenly experiencing extreme nausea, began vomiting and was now going to the bathroom 25-40 times daily. The bleeding had returned. I couldn’t eat anything, wasn’t sleeping and the Remicade stopped working. By May, I was completely bedridden and back in the hospital. I was vomiting 10 times a day while going to the bathroom close to 60 times. I remember sitting on the toilet and vomiting in the garbage can at the same time. During my hospital stay, another colonoscopy was performed and showed that my colitis had not gotten much better. I left that hospital stay after 4 days and returned home.
Upon returning home, I was the sickest I had ever been. Because of constant blood loss, I had two more blood transfusions. I went days without eating, hiding food in the garbage and not getting out of bed. I ended up back in the hospital for 8 more days on high dose IV steroid, TPN, double doses of Remicade, pain and nausea medicine through another PICC line, the whole 9 yards. After my release, I was to stay on home IV nutrition every night delivered through my PICC line by my father and have home health care nurses come to my house every week to draw blood from my line. All night I would run back and forth to the toilet, dragging a 5 pound backpack filled with liquid nutrition. Nothing was making a difference for me and I was suffering immensely.
The final option was switching to Humira, another powerful medication delivered by painful intramuscular injections. This medication did not help and a key test used to measure your inflammatory response, the C Reactive Protein Level rose to a critical level. A normal C-reactive protein level is a .2-.4. By the end of June my number read 95. I was at extremely high risk of bowel perforation which could kill me.
Upon my urgent visit to meet a surgeon at the Cleveland Clinic, I never wanted to have surgery and was told that I would never have to. I was always terrified of having an ostomy and it seemed, at the time, like the end of the world. Arriving to that appointment, I was lucky enough to see one of the best colorectal surgeons in the country. I was stunned when he told me I was extremely ill and he wanted to remove my colon in 3 days. He explained to me that waiting any longer was dangerous for my life.
I spent my last weekend with my colon in shock, crying, sleeping and going to the bathroom countless times. When Monday came, I bravely went to my surgery with no tears, just hope that this operation would give me relief from my pain.
When I woke up, I felt better than I had in 2 years. I forgot what it was like to feel good, to be able to live a normal life, without anxiety or fear of where a bathroom was or when the pain would come back. I couldn’t eat, sleep, live. Getting used to my ostomy has been hard, but it has given me my life back. I’ve come to terms with what was decided, I had no choices left.
I have two operations left, the next is just 3 weeks away, at which time my bowel will be reconstructed and a reservoir, or J pouch created, so that I will ultimately be without an ostomy.
When I first became sick, I knew I wanted to help others that have suffered as I have. I searched for the nearest local CCFA chapter and immediately emailed Debbie. The compassion and support that the CCFA has given me is immeasurable. They have inspired me, motivated me and connected me with some amazing, uplifting people that have shown me that I am not alone in my suffering and there is a light at the end of the tunnel. The CCFA sparked such a passion in me for helping others. I started and maintain my own blog, created an online magazine called Companion in order to help bring those who live with IBD together. Along with Debbie and the CCFA, I was given the opportunity to appear on a local Columbus daytime talk show in order to spread awareness for Crohn’s and colitis.
Crohn’s and ulcerative colitis are the worst kinds of thieves. They lie when promising medications don’t work. They break into your body and destroy your most beloved belonging, your health. They steal your confidence, and your ability to live a normal life.
Ulcerative colitis stole a lot of things that I loved, friends, a job and most importantly, my health.
I am no longer a victim or a prisoner of this disease. With the support of my family, friends and a great organization like The Crohn’s and Colitis Foundation of America I have broken free. My misery has been replaced with compassion, and an outlet to help others, and countless new friends that inspire me every day. Crohn’s, colitis and having an ostomy would make it easy for anyone to want to hide in their house and fear the world. The pain is inexplicable to those who do not have inflammatory bowel disease. The anxiety drains you of any hope. Your entire being is centered around a bathroom.
The CCFA takes the fear that robs people of their livelihood and helps them turn it into bravery. They offer support groups, fundraisers and most importantly, an understanding of how difficult it is to live with Crohn’s and colitis. Without the CCFA, I would not be the strong, independent and proud IBD patient I am today.
I want to thank my parents and sisters for giving me endless support and love. Without them, I certainly wouldn’t be standing here today. I want to thank my boyfriend, who has waited outside of countless bathrooms, watched me suffer and stood by my side through my worst pain.
My boss and mentor, Alicia Legins, who has taught me how to handle this situation as a strong and determined woman. She has taught me that this is not meant to bring me down, but to lift me up. Finally, Debbie, Brianne and the central Ohio chapter of the crohn’s and colitis foundation. Thank you for giving me endless opportunities to help those who may not be strong enough to help themselves.