On the eve of my first surgery in August 2005, my mother presented me with the book 1000 Places to See Before You Die by Patricia Schultz. My family is nothing if not a little twisted. My digestive system – which up to that point in life allowed me to eat damn near anything I wanted – had been stagnating for almost six months, and that was after three years of less serious problems.
The upside to a GI blockage (if there is one) is the weight loss; when you drop 60 pounds you can wear clothes that haven’t fit in decades. Pain and hunger are the obvious downsides, and all too often meals become a spectator sport with your loved ones feeling guilty while they eat and you look on with humble appreciation.
The reason I only lost 60 pounds over that period was due to a constant diet of bite-sized Hershey’s candies. I survived on, nay I thrived on, milk chocolate, dark chocolate, Krackel, and Mr. Goodbar miniature candies. Let me be clear: I do not recommend this nutritional plan for anyone. Surprisingly, no dental work was necessary after my half yearlong tryst with Hershey products, and I have yet to develop diabetes.
Leading up to all of this, a few of my doctors surmised I had Crohn’s Disease, a few others felt there wasn’t enough evidence for a Crohn’s diagnosis. All of them, however, wanted more and more tests. Universally, they agreed that something was afoot in my small intestine near the ileocecal valve, but beyond that not much was clear. The scans of this area didn’t reveal a blockage, and believe me, there were more photos taken of my GI tract during the spring and summer of 2005 than Kardashian selfies taken in the last two years. That might be a stretch, but not by much. Though the doctors couldn’t see a blockage, nothing would go through.
A brief side note: do not take your ileocecal valve for granted! I did. I didn’t even know I had one until the surgeon removed it, along with a few feet of small intestine and a short stretch of large intestine. The procedure is called an ileal colectomy. More on the ileocecal valve later.
The surgery was invasive and left a scar running south from my sternum to just below the bellybutton. Yep, my burgeoning swimsuit modeling career was officially put on hold.
The nature of the surgery meant I had the opportunity to hang out in the hospital for several days, which I found puzzling. A friend who had heart surgery was out of the hospital three days after her surgery. Why so long for me? With a resection of the intestine, infection is a serious concern. The surgeon, my doctors, and the nurses didn’t want me in the hospital any longer than I needed to be, but my stay would still be for a minimum of eight days. Most of this time was spent playing cribbage with my family; watching TV; and being roused every six hours for a vitals check. Healing happens in hospitals, not rest and recreation. Oh yeah, and I also walked countless laps around my hospital floor.
After the surgery, as the anesthesia wore off and the painkillers kicked in, I asked the same question no fewer than three hundred times, Was it Crohn’s? Fortunately for me, filming your loved ones under anesthesia and posting it on the World Wide Web had not yet become the rage that it is now. I feel fortunate to have been ahead of that curve.
Based on the surgeon’s initial inspection of my dearly departed tracts, he advised that it did look like Crohn’s, due to the damage he saw in the lining of my small intestine which was consistent with Crohn’s. He recommended patience though until the pathologist’s report was finished, and that would take several days. There’s that word again – patience.
At the time, I lived in Wyoming. The surgery took place in Rapid City, South Dakota, a two-hour drive from my home. During my stay in the hospital, the Sturgis Bike Rally revved into high gear, and each day as I walked my laps around the hospital floor, I could see the emergency helicopters arrive and depart at all hours with wounded (and sometimes worse) from Sturgis. The Life-Flight choppers swooping around made it feel like I was stationed with the M.A.S.H. 4077th – only Hawkeye, Radar, and Hot Lips were missing.
As I walked around and around the hospital floor each day, I contemplated life with Crohn’s Disease and all its annoyances. It was a tough cookie and wreaked hell on those who suffered from it. Perhaps today there are better ways to combat Crohn’s, but in 2005 it sure felt hopeless thinking about it. I really did not want to have Crohn’s Disease.
Three days into recovery, my surgeon arrived in my room looking slightly grim. A veteran cancer patient knows this body language all too well. Telling a patient they have cancer cannot be easy, but my surgeon calmly explained the pathology report on my small intestine revealed a 2.5 cm tumor – a carcinoid tumor. Aha! That’s what had been blocking my GI tract. Up to that point, I had never heard of carcinoid.
“But I don’t have Crohn’s, right?” was my response.
He looked puzzled and said there was nothing to indicate that I suffered from Crohn’s Disease. More than likely, the tumor had damaged the surrounding intestinal wall and made it look like Crohn’s. Then he stated that carcinoid tumors were malignant, and it was cancer, and in his mind, this was a very serious issue.
“As long as I don’t have Crohn’s I can deal with this,” I said.
I touted my case that since Crohn’s Disease wasn’t curable (at that time) I had a better chance with cancer. Because you can treat cancer, right? Oh, how naïve I was…
He kindly ignored my irrational thinking and explained that carcinoid tumors are rare – very rare – and it was his recommendation to refer me to Mayo Clinic in Rochester, Minnesota. His primary reason for doing this was that carcinoid is so rare that Rapid City Regional Hospital didn’t even deal with it. That should have been a sign to me, but it wasn’t. Since everybody’s heard of the world-renowned Mayo Clinic, it was natural to accept his referral, and along with my family and girlfriend, I began a crash course on Mayo Clinic, neuroendocrine tumors, and specifically, carcinoid tumors.
The first couple of weeks after surgery, getting out of bed is a decidedly rough task: roll onto your side, push yourself up into a sitting position, lower your legs to the floor (careful not to use your abs!) and then rise very carefully. Move too quickly or in the wrong direction and you feel a distinct tightness in your abdomen saying hey stupid, don’t move so fast.
Within a few months I return to work. The weight loss from the blockage worked to my advantage as my strength and agility returned – life was easier without being overweight. A couple months later I was jogging on a treadmill, something I had not done in several years. My abs healed and my core strength slowly returned.
However, the excitement was just ramping up. My diet following the surgery is pretty moderate and I don’t eat much. Although, I do get to return to solid food. Yes! One of the recommendations was to eat a high fiber diet. So I did. It was hard to believe I would ever pass up a Hershey’s bar for an apple, but I did. Salad? Yes, please. And that’s when I learned I was a changed man.
These foods pass right through me in a terrifyingly short amount of time. I mean, embarrassingly fast. Not only does the food take very little time to pass, but also at points throughout the day, I would be working and suddenly I would receive a hasty message from my GI tract. Think of it as Mission Impossible. My bowels would telegraph an urgent message: you have one minute, maybe less, to find a bathroom. Make it happen and good luck! Then I would hear Lalo Schifrin’s dramatic MI theme music and race to the nearest toilet. This is when having an ileocecal valve pays dividends. It’ll provide you with advance warning, just a casual, little tickle, as your food transitions from the small intestine to the large intestine. Just saying.
And when I say race, I mean gingerly walk as quickly as I possibly could to the nearest bathroom. So far – knock on wood – I have had no accidents but that will change some day. Sometimes the impossible mission required stopping on the way to the restroom and standing and exercising amazingly precise control over bodily functions (Hello, sphincter!). Certainly my co-workers must have thought it odd that I would pause in the hallway and stare at the floor in a thoughtful and pensive manner, perhaps with a bead of sweat dripping down my forehead. A pit stop to stretch, reconfigure internal anatomy, and tighten certain muscles could make all the difference in the world. Learning how to breathe in situations like this is equally important. Slow, relaxed breaths are useful. Even with all those procedures in place, a single trip to the restroom occasionally required multiple “stops”. And you can only imagine what it’s like to finally arrive at the restroom and find every stall occupied. Shit! Well, not yet anyway…
Awkward, embarrassing, and nerve-wracking are the best words I can use for this all-too common predicament. And once I was nestled safely on the throne, I had to be prepared, because it was all too possible that I would be seated for quite some time. Long enough for both legs to fall asleep, which required staggering out of the bathroom stall like Frankenstein’s monster. Comical? Indeed. Sadly this was my new life.
Unfortunately I had no choice to accept any of these missions. That’s just how it was going to be since I was missing a good chunk of intestine. Hiking and outdoor activities brought on apprehension, as I wasn’t terribly interested in testing how long I could squat in the great outdoors. And I had to amend my budget for toilet paper, because I was going through it much quicker than I ever thought possible. At home now, I’m rarely without a month’s supply. That’s the new normal.
Oh yeah, and on top of all that, I have carcinoid tumors. Not once that I can recall have I ever been angry about having cancer. Carcinoid was just the hand I was dealt and I’m going to play to win! Anger and stress are a waste of time.
That’s life after surgery in 2005. Sweet. However, as my strength improved, so did my food consumption. Having gone so long without solids, I dove into a big steak or ate a doughnut or two whenever I wanted. Life was to be savored and to a certain extent, I threw moderation to the wind. The food doesn’t affect me while I can still workout. By the spring and summer of 2008 I was in the best physical condition of my life. I biked 25 to 30 miles a day and lifted weights on top of all that cardio. As my job duties increased and my metabolism slowed, I didn’t adjust my intake. At the time that wasn’t a problem, but it would slowly grow into one.
What sticks with me from my final consultation with my surgeon is that he provided a rough estimate of the tumor’s age: approximately 10 to 15 years old. I don’t know if that was the surgeon’s guess or the pathologist’s, but that estimate has remained with me.
My tumor may have been a teenager and I didn’t even know it! 10 to 15 years? The thing was almost old enough to drive when the surgeon removed the little bugger. How did I go so long without knowing I was hosting a fugitive in my small intestine?