Many times I get asked if I’ve actually had it bad with Crohn’s disease. The main reason why I believe I’m asked that is because I like to keep a positive attitude and not dwell on a lot the negatives that I’ve been put through during my journey with IBD. The reality is that even when I discuss my Crohn’s story with others who have had it bad, they are usually even amazed as to what I’ve been through. In total I’ve had over 30 surgeries now. So I wanted to share some of my dark days with everyone.
For the most part growing up with Crohn’s disease after I was diagnosed at the age of 11 wasn’t to hard. I had a flare from time to time, but for the most part was healthy. Looking back I even remember using my IBD to stay home from school when I wasn’t even that sick (But really what kid wouldn’t do that). I realized that something was really wrong my senior year of high school. I was smaller than everyone else, missing days when I was actually sick and falling behind in my classes. There was even a rumor going around my school that I had AIDS. When I heard that I knew that my Crohn’s disease was actually beginning to affect my life.
After high school I got to go away for college like most kids dream of. Even though I had other choices I decided to go around the corner to attend the University of Rhode Island. This turned out to be a great choice, not because of their academics but because it was right around the corner from home. Half way through my freshman year I started to feel pain and pressure in my rectum. I didn’t know what it was, at the time I thought Crohn’s was just a stomach disease. Soon after this feeling I was sitting in class and knew something was wrong. A rectal infection had popped and drained right in the middle of a class. I was to embarrassed to get up, so I sat at my desk till everyone left the classroom, went straight to the bathroom and saw the enormous amount of puss that had drained out of back side. It smelled horrible and I was terrified as to what might be happening. I ran back to my dorm, took a shower and laid on my stomach hoping to give my rectal area a break. It didn’t work.
Over the next 19 months I had 13 surgeries for rectal infections. It was a constant cycle of getting sick, having a surgery, recovering for a couple of weeks, being healthy for another couple of weeks and then getting sick again. I had constant infections, setons coming out of my rectum and pain every minute of every day. This went on and on for what felt like forever. Finally it slowed down, but I still had to get rectal infections drained on a regular basis. The first two years of college were ruined, I remember fighting with my parents constantly because my father didn’t believe I was sick and I had to transfer home to the University of Connecticut in my hometown of Stamford. Still I wasn’t healthy and everyday was a battle. I was twenty and didn’t have any quality of life. After battling for more than two straight years I finally decided to have my first resection. This surgery would take out all of my ascending colon and some of my transverse colon.
The surgery was a success and I went into remission. Usually patients are told that Crohn’s may come back in 5-7 years. Mine came back in 3 years and it come back with vengeance. Surgeries for infections started again and my quality of life was lost to IBD again. I was going to the bathroom almost 15 times a day and had accidents all the time. Still I battled, taking large amounts of Imodium and other drugs to do anything I could to slow my bowels down. Eventually I had to realize it wasn’t working. I was now going 25 times a day with little to no control. It was time to have another resection. This time I would have the rest of my transverse colon out and a tiny bit of my descending colon taken out. My doctors told me that the rest of my colon was healthy and I would be able to have a normal life, going to the bathroom 4-5 times a day. Not that
After that surgery, my body never got better. I gave it as much time as I could, but I was still going 25 times a day. This time with less control because I digesting even less and taking in even less liquid. My bowel movements weren’t movements at all, it was basically liquid come straight out of me. The realization of an ostomy being in my future was clear. I was scared, wait terrified as to what that meant. Not knowing what it was exactly because I wanted to stay ignorant to it till this point. I started to do my research knowing that I had no other options, I had tried everything for an IBD patient and this was clearly the next step. The research was frightening. I was going to be a single 28 year male, with an ostomy. It brought me to tears. But I was going to take my life back and this was at least trying something.
The surgery was just over three years ago now and I can tell you it has improved my life greatly, in many ways it has saved my life. Still life isn’t perfect, I have some rectal disease left over which bothers me, my stoma has problems from time to time, and the worst part of all, Crohn’s disease is now affecting my small intestine.
I’ve done everything I can in order to control my disease. Living a healthy lifestyle is important to me, still my Crohn’s disease and I are always battling each other. Usually I try to only show a positive side and how I do everything I can to live a normal life. I’m here to say that my life is anything but normal, but as far as I know I only get to live once, so I don’t want to spend it crying about my disease and the hardships I’ve had to live through. I rather try to live as much as possible, laugh as much as possible and have as many adventures as possible when I’m not in a horrible fight with my Crohn’s disease.
Never Stay Quiet!