Raise your Glass for IBD Research!
Dear Friends and Family,
Welcome to my page in support of raising funds to help support Ulcerative Colitis and Crohns.
As some of you may not know, eight years ago I was diagnosed with Ulcerative Colitis. Because this disease is not well known, and many people do not talk about it, I kept my diagnosis to myself, family, and some close friends. Going through the rollercoaster I have been through I wanted to bring awareness, and hopefully help others in knowing its okay to talk about these diseases and we should be.
I am happy to say that today I am a strong healthy woman.
I would like to thank for the outpouring love and support I have received through this journey. A simple "Thank you" is not enough for the love I have received. I hope to find a cure with the money we raise, to help the patients of the future who have these illnesses.
This is my story:
Ulcerative Colitis and Crohns is a "newer" disease and there is not much information on it. Doctors don't know why people get the diseases or how, and they don't know how to cure the diseases. The medication that is available to people is to help put the individuals in remission, and have them live as much of a “normal” life as possible. Foods impact the individual and not all medications help as everyone reacts differently.
For two and a half years I was, for the most part, healthy. In February 2014 I was diagnosed with a parasite from Mexico. This, I believe, began the start of the downfall. Ignoring all of the signs that I was ill, I kept taking my Humira and going on with my life because I was prepping for my first Fitness Bikini Competition. After the competition in June, I was hospitalized in NYC by my Gastro for a week. I was pumped up with steroids and pain medication to try and stop the inflammation in my colon and pancreas. After my time at New York Presbyterian Weill Cornell, I found out I had built up antibodies to Humira. I was soon put on Cimzia, another injection that in 4 weeks I had built up antibodies to. My doctor had mentioned that the only cure for UC at this point is removing the colon. That not being an option for myself at 25, I found the best gastro clinic in the US, Cleveland Clinic in Ohio.
After visiting with my doctor, Dr. Gorgun, he had told me my last option is the J - Pouch Surgery. I would have 3 major surgeries and a bag for 9 months during that time. The only good thing that came out of this was that it would be done laparoscopically. He had mentioned that Colon Cancer was most likely the next step for me if I chose to not go through with the surgery or that my colon would burst.
On September 30, 2014 I had a colectomy done (removing my colon) and an end ileostomy placed. The night before discharge my temperature hit 104, and I was diagnosed with rareblood clots in my stomach. Once home, my INR reached a 6 and I was bleeding from the wound in my stomach. After being rushed to the hospital, I received 10 stitches in the wound and four plasma transfusions. Still bleeding 24 hours later in the hospital, my hemoglobin dropping from an 11 to a 4, emergency surgery was needed. During surgery I had 2 more plasma transfusions, 2 blood transfusions, and my abdominal muscles cauterized. Four weeks later I flew out to Ohio for my last surgery to reconstruct my stoma. I had more wounds around the stoma and almost the whole stoma was detached.
After more trips to the ER in 2015 it was finally time for my J pouch to be made and my second surgery. On April 2 I was brought in and had my surgery. Because I am prone to blood clots, two more were found on either side of my waist.
Before I knew it, it was time for the last procedure. To everyone not going through the surgery, it seems like nothing. It is only a 30 minute surgery and they were only reversing my ileostomy and closing me back up. To the patient, this is where the true mental challenge begins to take place. No one likes their bag, but at this time, the thought of the surgery maybe not working and me being stuck with the bag, not by choice, was making me not want to have my last surgery. I tried talking myself and loved ones into why I shouldnt reverse my ileostomy. Although they tried to understand, they told me it would be for the best, they knew I would regret not doing this.
Because this surgery was not considered so large, I just had my mom and I fly out to Ohio. My ENTIRE family had been to Ohio for the past 2 surgeries, spending way too much money in my opinion, so we decided this one would be easy and I would keep them updated on the phone. During Pre Op, the day before you have your reversal, the doctors have to make sure your J Pouch is completely attached. Right after this procedure I began to bleed. Not sure why, we were just told to keep an eye on it. That night I felt so weak and ill I went straight to the hotel room and tried to sleep. I was so sick that day, I could feel myself getting weaker and weaker, to the point I was crawling to the bathroom. At some point in the evening I ended up passing out in my mother's arms. I was rushed to the ER where they kept me for the night for observation.
This recovery had to have been the hardest. Not only was the pain the worst from this surgery, but I took a beating mentally as well. I went through so much pain that although it was horrible it didn't effect me that much. What was the biggest hurdle to overcome was my "bullet hole" and finding myself again. My scar was not what I expected, it was a lot worse, and the new road I had set out on being "healthy" was a difficult thing to swallow. For 6 years I thought of myself as the "Girl with UC". I knew there were foods I couldn't eat, things I couldnt do, when to go the ER, etc and now, at that point I had no idea who I was.
IBD is much more than what people think it is. It is a emotional and physical disease that people don't know about. Going through this rollercoaster I knew I needed to get the word and awareness for these diseases out there. The pain, discomfort, and all of the problems that come with an auto immune disease is terrible, plus the side effects from medications. After speaking to the Director of Philanthropies at Cleveland Clinic for IBD Research, I spoke to her about where the money that will be raised will make the biggest impact. I have decided the money will go to IBD Research with a small portion to the Colorectal Nurse's Scholarship.