My name is Christian Cotsakos and I have Lynch Syndrome. This is an inherited condition that increases my chances of getting colon cancer and other cancers. The unfortunate thing is that I didn’t know this until it was too late. On February 25, 2008 I had my first colonoscopy and was diagnosed with stage 2 colon cancer. I was only 26 years old.
Approximately two months prior to my colonoscopy is when it all started. I was working as a graphic designer, my first position after graduating college, and I was healthy. I weighed 220 pounds, stood out at 6′ 3″, and had an active lifestyle outside of work. Life was good. But this gradually changed with the onset of my first symptom, abdominal pain. The discomfort of this pain was infrequent so I didn’t think it was anything serious and chose to ignore it. As it would increase in size and severity, I found ways to keep a straight face and stall the inevitable hospital visit. I ate less food at each meal or skipped them altogether. Of course I started to lose weight within no time and risked blowing my cover at work. Anyone who questioned my new physique got a falsified version of the truth, but the only person I couldn’t face lying too was Michelle, my manager and confidant. I informed her of my situation, her maternal instincts kicked in, and she suggested I see a doctor right away. As persistent as Michelle can be, I foolishly chose to deny her request and endure the pain.
My third, and scariest, symptom occurred weeks later. Large traces of blood now accompanied my stool during bowel movements and the abdominal pain increased again. Usually, this wouldn’t alarm me because I’d seen blood in the past due to hemorrhoids, but now I had additional symptoms to stress over. I quickly jumped on the internet for a self-diagnosis and found myself staring at a list of possible answers. I was not about to choose my own fate based on that list, so I decided to inform my parents of the situation and allow them to take control. Their immediate response was to take me to the hospital that very same day.
On February 2 we decided to skip the routine office visit and go straight to the radiology department for help. They slapped a hospital wristband on me and gave me this godawful contrast to drink for the next two hours. I was prepping for my first CT scan. The procedure went well and was surprisingly easy. What was not as easy was hearing that they found nothing wrong with me; my CT scan was clear. The doctor said I could have IBS and prescribed Dicyclomine for my symptoms. Having thought I dodged the caner bullet, I was satisfied with her diagnosis and returned home.
My symptoms only subsided over the next two weeks while taking Dicyclomine. Fearing this was only the beginning of a long illness, I made an appointment to see my regular physician for another opinion on February 22. I was a new patient under his care, this was my first time seeing him, so my mother accompanied me to the appointment. It was important that we bring him up to speed and explain our family history with Lynch Syndrome and cancer over the last three generations. We told him, “we’ve had 4 cases of colon cancer and 1 case each for stomach, uterine, and breast cancer.” But the Lynch Syndrome was not discovered until my mothers diagnosis, and survival, of uterine cancer in 2004. I thought for sure that he would schedule a colonoscopy and/or additional testing after learning this information. Instead, he gave me an antidepressant medication known as Citalopram. He told me, “you’re only 26 years old and too young to have cancer.” I was perplexed by his conclusion and returned home in disappointment.
Two days later, on February 25, the abdominal pain reached excruciating levels and I was rushed to the hospital. I entered the facility in the fetal position, so I was placed in a drafty gown and confronted by a doctor in no time. Fearfulness took over and I began to breathe erratically when the reality of the situation set in. I was given morphine and a first class ticket to see the gastroenterologist. The next thing I remember was waking up in the hospital bed with my parents at my side. I quickly realized that there was no need to wait for the colonoscopy results because my parents faces said it all. “Christian, they found three tumors highly suspicious of cancer,” my mother said. I was infuriated more than I was surprised.
The biopsy results confirmed that it was cancer and that surgery was imminent. On March 20, 2008 I was scheduled to have a full colectomy and J-pouch formation at Kaiser Permanente in Walnut Creek, California. This would be my first contact with surgical steel and I was surprisingly calm. The plan of attack was to perform the surgery laparoscopically to minimize scaring, but that was of no concern to me at the time. “You do whatever it takes to get this out of me,” I said to the surgeon. Six hours later I awoke in the recovery room, happily surrounded by family. It was such a relief to hear their voices and feel their touch. The surgery was successfully performed through the traditional nine-inch incision without any complications. Then, without warning, my body was engulfed with outrageous pain and I had no choice but to scream and thrash about. The hospital staff took action and dismissed my family from the room. The anesthesiologist came to my rescue and administered medication through the epidural, but it ceased to function because it had slipped out of my spine unnoticed. I was feeling the full aftereffects of surgery. They had to replace the epidural and morphine with a much stronger drip known as Dilaudid. I was sedated and taken to my semiprivate room.
Six days later, still in the hospital, my body temperature increased overnight to 103 and alerted the surgeon. A CT scan revealed a large abscess near the connection between the J-pouch and the rectum, it was an abscess. A surgery drain was inserted into the abscess through my butt cheek, and I was prepped for emergency surgery within no time. The incision was reopened and a temporary ileostomy was required to cure the abscess and allow the J-pouch to heal uninterrupted. I awoke from surgery in disappointment, ready to give up, because this was not part of the plan. With the encouragement of my family, I pushed through the next few days until my recovery was challenged again. I was given a medication for nausea that had an opposite effect when I suddenly spewed out green bile. My stomach had to be pumped out via NG tube for the next 4-5 days. More weight loss occurred during this period and I became malnourished and fatigued, so I received food intravenously. Next, they installed a PICC line in my upper left arm to make things “easier” and to reduce the amount of IV lines. Unfortunately, this gave me a blood clot, therefore requiring an additional set of medications and care. My release from the hospital was approved as soon as I could manage pain with oral medications. I was sent home with two surgery drains, an ileostomy, a blood clot, and a strict schedule of self-injections in addition to my medications. The total time spent in the hospital was three consecutive weeks.
Now, in the care of my devoted parents, the recovery continued. Standing at 6’3″ and weighing 150 pounds (down from 220) proved to be a challenge in its own. Walking down the hall to empty my ileostomy bag was barely attainable, but my mother was there to hold my hand while my father encouraged me with positive reinforcements. I kept telling myself to push forward and do what it takes to survive. For the next 6-7 months I had to take care of one thing completely foreign to me, my ileostomy. I had typical issues one would have with a stoma and bag, but I’ll spare you the dirty details.
Instead, I’d like to talk about my life as J-pouch owner. I obtained full use of my pouch starting October 8, 2008 when I had my ileostomy reversal surgery, or takedown as it’s commonly known. This was my last surgery so I was thrilled and juiced to get my life rolling again until I realized what my new design required. I was naive and thought I could return to my normal activities and eating habits unscathed, but I was mistaken. For example, I would indulge in a simple bowl of ice cream for five minutes, digest it for thirty, and suffer from it for hours or even days. As soon as the ice cream entered the J-pouch I would become immobilized with pain as I ran to the bathroom. The next sensation I felt is best described as hot razor blades passing through my rectum. I experienced the same reaction with all kinds of foods, but each one required its own recovery time; it was exhausting and discouraging. According to the doctor, and other J-pouch owners, this was considered normal for the first three months post takedown, so I waited the ninety days.
During those three horrendous months of pain, fatigue, and sleepless nights I became uncommunicative to the world. This was unacceptable behavior and I needed to see my doctor right away. The pain turned out to be an inflammation of my J-pouch known as pouchitis. I was given a small supply of the antibiotic called Ciprofloxacin and it worked its magic for about two weeks. Then, the pouchitis symptoms returned quickly as did the next dose of antibiotics from my doctor. This went on for months until I became immune and they ceased to work completely, but I still had the same symptoms. I scheduled a sigmoidoscopy, one of many to come, to assess the situation internally in hope for answers. Surprisingly, my J-pouch appeared healthy and the biopsy results agreed, there was nothing out of the ordinary. Because I was deemed heathy, but still in pain, my GI doctor had no choice but to recommend an array of medications that might help my situation. I told him, “I’ll do anything at this point!”
Months went by and I managed to accumulate seven different types of medications in my nightstand. I had a combination of pills for rectal spasms, pain, insomnia, and diarrhea. Most of them worked for a short period, but it was never enough. Plus, I was consuming all these toxic ingredients that could wear on other organs. I decided to take this in my own hands with a healthier approach by eliminating all my prescriptions and focusing on my diet. I consumed many types of food deemed safe for a J-pouch patient over the next few months. This was a case of trial and error that took a toll on me physically and mentally. I came close to my breaking point, until I read about psyllium fiber on a J-pouch forum.
In early October of 2009, I started taking a low dose of psyllium fiber each day and noticed a dramatic difference within a week. Excited with results, I figured more fiber couldn’t hurt and increased the dose to three times a day. I was astonished with what happened next. The pain subsided and I was able to reintroduce familiar foods again. I finally achieved some relief from my J-pouch and realized I don’t have to let it control my life. This is the attitude I had for the following months, and the attitude I carry today.
Today is June 21, 2010 and I am happy to report that I’ve remained cancer-free for 27 months and have become a survivor among survivors. Of course I didn’t earn that title alone. My parents, Jim and Judy, were there every step of the way and played a pivotal role in my survival. I have a second chance at life because of them, my extended family, and friends. I’m truly grateful for those around me and their loving dispositions.
Until my recent involvement with the upcoming 2011 Colondar, I’ve remained publicly reserved about my cancer story. Sure, I’ve participated in cancer events that acknowledge survivors, but I didn’t make a stand or make myself known. The Colondar, and its participants, have inspired me to share the wealth as a survivor and increase awareness. I was amazed to see a group of people, who only knew each other via email, come so close in less than a week time. I know most of us had an illness to overcome before meeting in life, but the connection we now share is special and unique. We bonded with each other through our acceptance as survivors and reached out when in strength, weakness, and vulnerability. It was a magical experience that I will carry with me always.