GI Care Inspires Partnership from Patients
My name is Justin Mirigliani, and I am now one of over 500,000 Americans who live with an ostomy.
In December of 2002, two days before my 28th birthday, I was diagnosed with Ulcerative Colitis (UC), one of many forms of Irritable Bowel Disease (IBD). In the three months that followed, my health spiraled out of control. I was near death. I had lost 50 pounds; I was bleeding internally, anemic, and severely malnourished. It was at that point that Jefferson’s Dr. Jorge Prieto saved my life the first time.
Within minutes of my first office visit with Dr. Prieto, he ordered a room for me at Jefferson. I spent seven days in the hospital. I walked out much healthier, although; my new health came with a price. For the next 12 years, I had to take nearly 30 pills a day to keep my Inflammatory Bowel Disease at bay. Aside from the minor side effects of the medications, I was consistently fearful that I may endure more serious complications from my disease.
When I first got sick, I only had to worry about myself; since my diagnosis, I had married my beautiful wife Amy and welcomed two precious daughters, Alex and Rebecca. You see. Ulcerative Colitis has hereditary components to it, and the thought of my daughters suffering the same fate I had was more than I could endure.
My options to fight back against Inflammatory Bowel Disease were limited. I didn’t have a degree in medicine, I wasn’t a lobbyist who could push for more studies on IBD, and I wasn’t in the position to make a large donation. I had to become a force in the fight against IBD, so Jefferson’s Office of Institutional Advancement let me know about the other ways I could make a difference. That’s when I started a charity to raise money for Jefferson’s Division of Gastroenterology and Hepatology.
In September 2014, I created Checkmates Charitable Association. Checkmates’ major fundraiser is a yearly ice hockey game against the Philadelphia Flyers Alumni. The first game was held in January 2015 and raised several thousand dollars for GI at Jefferson. I was proud of what we had accomplished and felt like I was making an impact and helping beat the fight against UC, I was winning.
In June 2015, I had my yearly colonoscopy. Dr. Prieto knew how important it was to check on the health of my colon. I felt reassured after the procedure when Dr. Prieto said, “While there is still some inflammation, it is a little better than last year.” He also noted there were no signs of colon cancer. Being the thorough and diligent doctor that he is, Dr. Prieto took 30 biopsies of my colon during the colonoscopy. Since this was my 10th colonoscopy, I knew the procedure well: In a week or two I would get the call that the biopsies were clear and carry on with my prescribed regimen.
On the night of June 16th, our house phone rang. I wasn’t home so my wife picked it up and spoke to Dr. Prieto. He said he needed to speak with me. When I got home, it was too late to call him back, and in my heart, I knew that something was terribly wrong. I had never gotten biopsy reports back that quickly, and I could barely sleep that night.
When I connected with Dr. Prieto the next morning, he calmly told me the results of the biopsies, “Justin, we found high grade dysplasia in your colon. That is a step below colon cancer.” I felt my entire body burn and my knees buckle while he helped me to understand what was happening. I will never forget what he said to me at the end of that conversation, “You’re gonna be alright man!” The fear I felt was staggering, but he offered me hope that no matter what, I was going to be OK.
Out of the 30 biopsies that Dr. Prieto took, only one of them showed high grade dysplasia. If he had not been so comprehensive in taking the biopsies, the dangerous cells might have been missed, and I might be battling colon cancer today. While I had some options, the only 100% safe option was to have a total proctocolectomy; large intestine removal with permanent ileostomy.
On September 24, 2015, Dr. Prieto would again save my life. After 6 days in the hospital, a 9-hour surgery, and a long recovery, I am healthy. Because of Dr. Prieto’s knowledge, experience, and aggressive monitoring of my Ulcerative Colitis, I am here today. I am able to live a mostly normal life which entails running my own corporate training business and charity, being a father to my daughters and a husband to my wife. I’m starting my own Podcast in the fall, and I am trying to become the first man with an ileostomy to bench press 405lbs!
The only way we can ever stop IBD is to raise money, and just as importantly, awareness in the battle against these diseases. IBD afflicts about 1.4 million Americans with symptoms that include pain, vomiting, diarrhea and bleeding, and it contributes to about 50,000 deaths each year. Philanthropic support helps fund clinical research that promises to ease suffering and brings improved care and services to Jefferson patients with IBD as well as financial assistance for patients unable to afford the cost of care. It’s also important to keep in mind that a cure for IBD may be a breakthrough for many other autoimmune diseases including Rheumatoid Arthritis, Lupus, Celiac Disease, Type 1 Diabetes and Multiple Sclerosis.
I do not know if we will find a cure for Ulcerative Colitis in my lifetime, however; I will do my part to fight for that cure. Running Checkmates is a way for me to fight back against a disease that took so much from me and also a way for me to thank Dr. Prieto for saving my life.
Justin Mirigliani – patient of Dr. Jorge Prieto. Justin combined his love of ice hockey and fighting spirit to create a hockey team that plays charity games in the Philadelphia area each year. For the past two years, the Checkmates team has played against the Philadelphia Flyers Alumni. Justin is always on social media and created a series of videos about his recovery.