Inflammatory Bowel Disease: It’s In the Bag

The other stress that comes with Ulcerative Colitis and Crohn’s Disease, is the fear that one day the inflammation will lead to colon cancer. I held my breath with every colonoscopy. I knew that the long term-constant inflammation was damaging my colon permanently. Still, since I was able to live a fairly normal life, I decided I would rather live with UC rather than go through a life changing operation. On June 10, 2015 I underwent my 10th colonoscopy in 12 years.
My doctor, Dr. Jorge Prieto, of Jefferson Hospital in Philadelphia, said that the test showed that I still had active colitis, but there was some healing in parts of my colon. I asked the same question that I always asked him, after each colonoscopy, “Did you find any cancer?” He said he did not and that was good enough for me. I left the office feeling encouraged that things didn’t get worse and actually got a little better.
I dropped my daughter, Alex, off at swimming on the evening of Tuesday, June 16, 2015. While she was at swim practice, I decided to put myself through a punishing cardio workout. I was exhausted as I jogged back to the pool to pick Alex up. I was feeling good about myself. I figured I had to be in pretty decent shape to work out like I had just done. I was sitting by the pool, panting and sweating, but with a smile on my face. Just then the phone rang. It was my wife, Amy. She said that Dr. Prieto called and need to speak with me. He wouldn’t tell her what he wanted to talk about, but he said it had to do with the biopsies he had taken during my colonoscopy. My legs went numb and I felt a burning sensation come over my entire body (I feel it now, as I write this blog). I knew the news could not be good. I had never had biopsy results come back that quickly, it usually took two weeks. Dr. Prieto asked Amy to have me call the next day. I did not sleep much that night. I was so worried about what news could be awaiting me. The next morning I called Dr. Prieto’s office. He was with a patient and I was told that he would call me back within 5 minutes. I was drenched with sweat. I could hear myself breathing heavily. When the phone rang, it took me three rings to pick it up. I gulped and answered his call. Dr. Prieto got right to the point. “Justin, we found high grade dysplasia in your colon. That is a step below colon cancer.” My knees buckled and I remember wildly asking Dr. Prieto question after question desperately hoping I would fine something to calm me. While there was nothing, medically, that he could offer to make this devastating diagnoses any better, his final words to me were, “You’re gonna alright man!”Although those words didn’t change the uncertain future I would face, it gave me hope. After I hung up the phone I collapsed in tears of fear. I called my wife and when she heard the news, she cried with me.

I called my mother and told her the terrible news. She tried to be strong for me and give me hope, but later told me she cried when we hung up the phone. I don’t know how I did it, but I ran a computer training course, just 20 minutes after this scene unfolded. I guess I was on autopilot. Unfortunately, due to my severely precancerous condition, total removal of my entire large intestine was the only sure way to save me from colon cancer. On September 24, 2015, Dr. Michael Harris of Englewood Hospital, in Englewood, NJ performed a total proctocolectomy with permanent ileostomy. I would now life the rest of my life with an ileostomy bag. An ileostomy is when the ileum, or small intestine, is brought to the surface of the stomach. This is called a stoma. Stool is excreted through the stoma into a bag. People with an ileostomy empty the bag of wet stools about 6 times a day. The surgery to do this took nine hours, but it saved my life. Much like Dr. Prieto, I owe Dr. Harris my life!

The question was, what kind of life would I have? Before the surgery, I had been a weightlifter, a hockey player and a very active person. I was petrified that these things would be lost. I was sickened by the sight of my stoma. I wondered how my wife could ever seem me the same way. I lost 40lbs in the 4 bweeks after surgery. My once 19” biceps lost 3”. I looked gaunt and sickly. Little by little, though, I began to eat more. I was getting stronger, walking around my basement, at first, and then walking down the block. Eventually I was walking 2 miles a day. By November of 2015, and just 8 weeks from massive surgery, to my shock I was lifting weights. In late November I put on my hockey equipment and played a hockey game and by my 41st birthday, on December 20th,
I was back over 200lbs. I began skiing again in March of 2016 and in late March, my 19” biceps were back. I would be a liar if I told you that I knew everything would work out. I still run the risk of having a hernia in my stoma due to my weightlifting and my athletic lifestyle, but I figure, I will deal with that if and when that happens. In the meantime, I am living life. My business is back and better than ever. I am currently trying to become the first man to bench press 405lbs with an ileostomy. I play hockey twice a week. Most importantly I am able to be a husband and a daddy. I am no longer chained to a bathroom. I no longer have to worry if colon cancer will take my life. I am no longer on 30 pills a day, just to stay
functional.
The biggest goal I have, now, is to help rid the world of inflammatory bowel disease. My daughters have a considerably greater chance of being stricken with it because of my disease. I want to make sure they are never on a phone having a doctor tell them what I heard from Dr. Prieto. Because of that I have started a charity called, Checkmates Charitable Association. Among other things, Checkmates plays hockey games against the Philadelphia Flyers Alumni to raise money in the fight against Ulcerative Colitis and Crohn’s Disease. We have raised about $50,000 in the last three years. Our website iswww.checkmateschairty.com. Our next game against the Flyers Alumni is on March 24, 2018. Dinner with the Flyers Alumni follows. Go to our website for more details and to buy tickets. I don’t know if I will ever be thankful for what I have been through, but I am thankful I am in the position to help others who suffer with inflammatory bowel disease or its aftereffects. I hope I can be an advocate for those who have ileostomy, colostomy or urostomy. For that matter I hope my life can be an example of how the human spirit can overcome even the most difficult of times. I am nothing special. If I can do it, others can do it! All it takes is will! If you will it, you will do it! Live the Warrior Life!

1 reply

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *