Greetings IBD Patients!
My name is Bianca Hernandez and I am a 17 year old ulcerative colitis patient. I am also the founder of "GO" Free. It is a huge honor to be sharing my story on Crusade for Crohn's and Colitis. I hope my story serves as true look at how you can change a diagnosis into a new look at life, and a new opportunity to make something great out of a "not so great situation".
During June of 2015, I began experiencing symptoms such as bloody stools and the incapability to use the restroom, while on a weekend vacation. Since this was not in my "normal routine", I visited my pediatrician. She told us that she believed it was a bacteria, but to visit a gastroenterologist if the problem got worse. I was never in any pain and continued to show symptoms, therefore, I did not think it was a big deal. However, I scheduled an appointment to meet with gastroenterologist, Dr. Raghad Koutouby. She ordered many different stool samples and different blood speciments.
At the end of July, my symptoms became much worse and all the tests came back negative. Dr. Koutouby scheduled me for a colonoscopy and an endoscopy. On August 6th, 2015, I was diagnosed with ulcerative colitis. After not being able to complete my colonoscopy due to the large amount of inflammation in my colon, Dr. Koutouby had seen multiple ulcers and inflammation in my colon and rectum. Soon after, I was placed on a low dosage Steroid called Uceris, Apriso, Canasa, and multiple vitamins and fish oils.
Since my calprotectin levels were so high, I decided to try the GAPS Diet, to try and heal my gut. This rigourous diet consists of eating/drinking the gelatin part of the bone, once the gelatin is boiled, for breakfast, lunch, and dinner. After certain stages, one is able to add certain foods into the diet such as chicken, honey, and eggs. Although this diet was healing my colon, I lost weight and became very tired, due to the lack of nutrients. I dreaded walking around and would fall asleep in all of my classes. I had 0 energy and this diet was becoming very hard.
During this time in my life, I had started my Junior year and had a lot on my plate. I served as my school’s Junior Class President and the lead in the Drama production. However, no one was aware that I had this invisible illness. Although school was stressful, the most stressful thing I had been dealing with was my sense of urgency I was not able to control. I had a very hard time controlling when I needed to use the restroom, which became very embarassing.
School was one of my favorite places to attend, but being embarrassed to use the restroom prevented me from wanting to go to school. That’s when my school counselor allowed for me to use the private restroom in the school, to avoid embarrassing situations and giving me the privacy to deal with my disease, whenever I needed to.
After I was able to use the private restroom, it felt like a HUGE weight was lifted off my shoulders. I didn't have to worry about going to the public restroom and or having an accident. With the private restroom access I was able to go to the restroom without having to be rushed with the next person in class waiting to "GO". I did not have to worry if I had an accident because I carried an extra pair of clothes under the drawer. And more importantly, I was granted the proper discretion that all IBD students deserve.
In April, I began a program called “GO” Free, which grants IBD students access to use the private restrooms in their schools while also spreading awareness and compassion for IBD students in their school communities. I have met with 16 schools this summer who will have the “GO” Free Program available in their schools this upcoming school year. Also, I have met with the University of Miami’s Institute for Individual and Family Counseling Center as well as Counseling Centers throughout Miami. This past week, I was awarded an Honorable Mention at the Silver Knight awards for the service I have completed with "GO" Free.
Today, I live a very happy, healthy, and exciting life. I am looking forward to attending college in the Fall. I am currently maintained on Lialda and a few other immunomodulators. Always remember that this disease DOES NOT have control over YOU, you have control over IT.
My advice to newly diagnosed patients, especially still attending school, is to TALK about it. I know at first it is not the most comfortable topic, however, people are not mind readers. By talking about your disease, your administrators and teachers are able to make accommodations that you rightfully are entitled to. As far as embarrassment, we are the ones who put the embarrassment on ourselves. OH WELL! We have a "pooping" disease. SO WHAT! So do 1.6 million individuals around the world. Be open, talk about it, and I promise you will inspire others to do the same. To all newly diagnosed patients, remember YOU are in control of this disease. Stay away from rough foods, exercise, and most importantly, find what works for you.
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