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From No Pulse to CEO

My Life with Short Bowel Syndrome and How I’ve Managed on My Journey to Build a Company.

What you’re about to read is how I battle against the statistical gods everyday living with a rare disorder on my quest to be successful. As a teenager and high school student I was forced by circumstance and the sheer will to survive to make decisions that most adults never have to face. It shaped my view of the world, made me mature faster than most, and lit a fire of passion for my hobbies and dreams.

“The doctors told my parents that I would be lucky to ever eat anything or even drink water ever again.”

If you met me on the street, you would never guess anything you are about to read has happened. I like it that way. I push myself to live my life so that I won’t be viewed by others as different or out of the ordinary. But the reality is, behind even the most “normal” of people, lies the most extraordinary tales. I hope this story can help us connect.

Growing up in the suburbs of NJ…

I was born in 1995. I guess that makes me a millennial, though you can read two different sources and come out with different answers for that. My actual birthday is March 14, and the coolest part about that (at least to me) is that I share a birthday with the great Albert Einstein (I found this out when I was pretty young on a trip to the Liberty Science Center). Science became a big part of my life as I got older, so maybe there’s some cosmic significance to this.

Four consecutive years in a row, we were Champions

My hometown is a small suburb of 13,500 people. You get to know your neighbors pretty easily, and that makes for a nice community.   I had a relatively normal experience growing up, nothing out of the ordinary or flashy. I enjoyed hanging out, riding bikes with friends. I played sports – baseball and football but grew out of the former as I grew a little older. Football then became a passion. I was fortunate to grow up with a crazy talented group of kids and together we went on to win championships for four consecutive years in 2004, ‘05, ‘06 and ‘07. I loved every minute of it. The competitiveness, the feeling of success, and the reward for all the sweat and pain that was spent training in the brutally hot summer months.

circa 2004

Sports ignited something in my mind that I carry to this day. The thought of quitting or giving up without complete success never, for a second, crosses my mind. That mental fortitude probably helped to keep me alive as I was thrown obstacle after obstacle in my teenage years. I had to make decisions and lifestyle changes right at the start of high school, things that many adults – let alone kids – never have to think about.

Something isn’t right here…

How many people do you know that can celebrate both a birthday, and what I call a “death-day?” I know, maybe slightly morbid, but I can. Mine is January 30, 2009. Maybe “celebrate” is the wrong term – “acknowledge” is more fitting.

That year was the year of the H1N1 Swine Flu. I was young at the time, but I remember hearing about it every night on the news. My family members had it for a few days that winter, and even I had some bouts of vomiting, which weren’t fun, just a few nights prior. Other than one night of the sickness though, I was feeling great. And we were getting ready for our football team’s end of the year banquet dinner on the night of Jan. 30. This was my eighth-grade year, my last in middle school. Some of my friends growing up were preparing to go their separate ways to private high schools, but the majority of us were staying home. We were eager to start the next phase of our lives. At this point, nothing could stop me, or so I thought.

I went to sleep on Jan. 29 feeling perfect. My appetite was strong again after having the ills a few days before. Just a normal night. But a few hours after midnight, however, something changed. At the time, I slept on a roll out bed in the room I shared with my younger brother. I woke up with this gut-wrenching pain that felt as if there was a knife in my stomach, twisting an turning, but in reality it is truly indescribable. I was simultaneously cold and hot. Cycling between nauseous-ness and relief. I waited a few moments, and the pain intensified. I remember changing positions to try to soothe it, but nothing helped. It eventually got to the point where I couldn’t breath without feeling like something out of the movie Alien was going to burst out. I woke my dad up, and we decided to drive to the ER, something that I would never suggest unless there is something extremely wrong (sidebar, if you want to know the kind of pain tolerance I have – a year prior, I knocked out three teeth whole, which were reinserted into my mouth without Novocain).

At the hospital, I waited a while to see a doctor – there were many people there because of the pandemic that year. Finally, when I was seen, they attempted several times to find my temperature, to no avail. Six different times they tried until they finally found it to be 92F – pretty low, right? I vomited once while I was there. But after a few hours, and a few IV drip bags later, I finally started to feel the pain subside. The doctors believed it was just flu symptoms, and I was discharged.

I got home feeling weak and tired. I didn’t even want to go back upstairs to my bed, so I just laid on the couch and fell back to sleep. Three hours later, my mom woke up and offered to make me toast and tea. I followed her into the kitchen and sat on one of our chairs.

The remainder of this story is not from my own memory. Watching my mom put two pieces of bread in the toaster is the last living memory I have of the time. What follows is what I was told when I became fully aware again about a week later…

What happened?…

From what I was told, a few moments after sitting down on the chair, I slipped off and crashed onto the floor. My mom turned to find me seizing and foaming at the mouth. She yelled for my dad, who woke up and threw himself down the stairs to find out what was happening. Immediately, his instincts told him to get help fast. My mom phoned 911, while my dad lifted me over the sink to remove the risk of me choking on whatever was trying to come out. To my luck, there was an officer literally around the corner, who was at the house in seconds. If he were anywhere else at the time, there is a good chance I wouldn’t be here writing this today.

“He checked for my pulse

but couldn’t find any.”

He lied me down on the floor and told my family – all of whom were awake now – to go in the other room. He checked for my pulse but couldn’t find any. The officer started emergency CPR until the EMTs arrived. I’m eternally indebted for this. It’s because of these first responders and the quick actions of my family that I’m still here. So thank you to everyone, if you ever happen upon this.

The scene that was described to me was like something out of a movie. The entire road was blocked off with what looked like every emergency vehicle in town. I was put in the ambulance and escorted back to the hospital. The story only gets stranger from here…

My first surgeries…

Remember the timeline, I was brought back to the ER by ambulance on the morning of Jan. 30.

The doctors chose to do some scanning and testing of my head to ensure that I didn’t receive a concussion from when I fell from the chair. After, I laid in a bed, waiting until late night on Jan. 30 for a CT scan of my abdomen. Lo and behold, this was now a Friday night, so no one was available to read the scans until the next morning. Saturday morning comes around, and the doctor finds something very wrong in my intestinal tract. They have to do an emergency exploratory of my abdomen, but they don’t really explain the problem to my parents.

The first surgery I’ve ever had in my life was on January 31, 2009. That day, the surgeons came out of the OR and told my parents that they removed over 95% of my small intestine. Nearly the entire organ had died. One of the loops in the anatomy of the bowel twisted over itself – a phenomenon called a volvulus – and it had cut off blood circulation to the rest of the organ. They then told my parents that I would need another major surgery the next day to ensure the remaining pieces had good blood flow. The outlook was morbid. The doctors told my parents that I would be lucky to ever eat anything or even drink water ever again. They said if I wanted any semblance of normalcy, I would need an immediate intestinal transplant, a surgery that carries only a 42% 5-year survival rate. This surgery is something both my family and I determined would be a life or death choice. If I could live with SBS, I would.

The next day, more bad news. During my second surgery, more of my intestine had died. The surgeons removed more of the organ and now had to do a third surgery the following day. Luckily, the third was the last – for now. During that third surgery, the doctors removed both my Gallbladder and Appendix since they aren’t quite necessary and could lead to issues later in life (which, for one, it did!). All that was left now was for me to be in and out of consciousness for a while, with all kinds of monitors, tubes, and medicine to make sure I survived.

Things are getting worse…

As I said, I came back to consciousness a week later. I woke up to a room full of family members. Some of my closest friends came to visit. And I had boxes full of cards and well wishes from everyone in town.

I couldn’t speak because I had been intubated with a breathing tube so to communicate, I used a notebook. The first thing I asked my dad was if I’d be able to play football the next season… haha! Seems kind of comical now, looking back, but at the time I was still an innocent minded kid.

Broviac Tube

I had a ton of new things thrown at me. This entire story of what happened. Explanations from nurses and doctors on the medication I would have to take for the rest of my life called Total Parenteral Nutrition (TPN) – essentially, a liquid form of all the caloric and nutritional needs for life. This would be pumped into my bloodstream through a catheter called a Broviac tube for 12 hours a day, 7 days a week. Having this tube meant that I could no longer take a normal shower. For six years I would tape Ziploc bags around the site to remove the risk of water entering and causing a line infection – something that could be fatal. I couldn’t go swimming. I had to be insanely careful of any issues with this tube because that would mean I might be forced into a transplant situation, which I mentioned is something I’m avoiding at all costs. I was completely self conscious. For years, I wouldn’t take my shirt off for anything.

I also had a tube in my stomach known as a G-Tube that allowed for mechanical feeding while I healed. And yet another tube worked to remove a green fluid that was filling my intestinal cavity where the organ had once been.

This green fluid was supposed to go away shortly after surgery. But two weeks had gone by and it started getting worse. I was feeling ill, weak, and compromised. A simple walk down the hall to keep the blood flowing in my legs tired me beyond belief. It was demoralizing to think about what I looked like to those watching on.

My one glimmer of hope came one day on these walks in the hall. I noticed a box of Munchkins (donut holes for you non-East Coast folks), sitting in the break room. I begged for my dad to sneak me just a piece of one. It had been over two weeks now that I had eaten anything. He put up a fight but ultimately let me sneak a bite of a plain one. I can’t explain that moment well enough in words.

Behind the scenes, the doctors were telling my parents that they didn’t know what else to do. My condition was getting worse. This green fluid was coming from what they believed to be an infection, but I wasn’t responding to any of the antibiotics. Their next idea was to change medicines and simply watch me for three more weeks. At this point, everyone was fed up. The constant lack of knowledge and indecisiveness drove my family to seek out a better point of care. Luckily, we had a connection to one of only seven accredited hospitals in the entire country that treats patients with SBS. The fact it was right in New York City was even better. My parents had me immediately transferred.

One more surgery…

After being moved, I met with some new specialists. They were concerned about the supposed infection, and scheduled me for another surgery on my abdomen on Feb. 26, 2009.

This infection turned out not to be what we thought. Instead, the hole left where my Appendix had been was not properly closed. The appendix may not be of much importance to us, but some pretty toxic liquids still move through it. As soon as this was taken care of, I improved in a matter of hours. A few days later I was even allowed to order my first meal – mac and cheese and a tuna sandwich. Personally, I hate the taste of tuna, but that meal was the greatest thing I’ve ever eaten.

Three weeks later, on March 11, 2009 I was discharged. Just three days before my fourteenth birthday. I had friends come over that day, and I remember trying to run up the stairs two at a time but I couldn’t muster enough strength in my thighs to pick myself up. I was weak and feeble. And I didn’t want to think about what my future would be like.

All in all, I was left with just 6 inches of small intestine. A normal individual has, on average, 20 feet! To put that into perspective for you, here’s a good reference: imagine typing out a single dot. That dot represents my remaining bowel. Now, type 39 more dots. That’s – to scale – how much bowel you have (assuming you don’t have SBS of course).

My intestine:             .

Normal intestine:     ………………………………….

The “normal intestine” is what our bodies have evolved over millions of years to in order to absorb the proper amount of nutrients for life. I’m left struggling to capture that same absorption in my little remaining amount. That’s a huge problem for most, but I was determined to not become just another statistic in a record book somewhere.

My Journey through High School…

This all happened in a span of six weeks midway through my final year in middle school. I had a tremendous amount of support to help me not lose track. My teachers dedicated their personal time each week to come over and tutor me on the material I had missed so that I could graduate on time. It was during these tutor sessions that I found how talented I was in math and science, and the term “engineer” was first brought to my attention.

My friends and the community put together an awesome fundraiser event, which they called “Will Power.” What started out as a fundraiser for the local track team, they instead focused the effort on helping my family pay medical bills. Beyond that, my neighbors kept bringing platters of food to our house so my mom didn’t have to worry about the small things that add daily stress. It truly is amazing, how gracious and thoughtful the community was.

A lot of help came from the community

Sports were now out of the question. With tubes poking out of my chest and stomach, and with my weakened state, physical activity was extremely difficult. I’m also prone to rapid dehydration. It was a struggle to get my body to grow accustomed to the new chemical imbalances. With SBS, especially in the early years, you need to harshly regulate what is input. High levels of fat, sugar, and even just plain water could cause severe negative side effects.

Despite this new reality, I was mentally the same stubbornly determined person I was before, so I needed to focus my attention on something else. I turned to books and school. Reading feverishly, studying more, and pushing myself to know as much as possible. I packed my high school schedule with as many Honors and AP courses as I could handle. It eventually paid off. My senior year I ranked at the top of my class and graduated Valedictorian. I was inducted into several Honors Societies and accepted with scholarship to one of the top engineering schools in the country. It was a nice comeback story for someone who just years earlier was knocking on death’s door.

Recognition in the local paper
Recognition in the local paper

My mom and I spent hours each day researching about the disorder, futuristic procedures, and doctors that could help us with advice. I remember writing letters to the local politicians and the President to get my story, along with the story of the other several thousand SBS patients, more attention. Some additional letters went to researchers and scientists on the West Coast who have been studying for decades the efficacy of stem cells and Tissue Engineered Small Intestine. My hope, to this day, is that I can receive a transplant of my own genetic makeup – removing the need for toxic and harmful immunosuppressive drugs.

I have signed memorabilia from meeting the Steelers

I also have some great eventful memories from the time. In October 2010, I was able to meet my favorite NFL team, the Pittsburgh Steelers. Since I went through a traumatic experience, I qualified for a Wish through the Make A Wish Foundation, which helped me realize this dream. That was the first time I had ever been to Pittsburgh, and definitely one of the best memories I’ll hold onto forever. Beyond that from all my time in the hospital, I was able to speak with and meet other patients who had the same condition. Some of them, unfortunately, aren’t with us today, but I hope they knew that it was thanks to those interactions and friendships that positively impacted my outcome.

Got to meet my icon, Troy Polamalu
Got to meet my icon, Troy Polamalu

On to College, What’s Next…

I can’t really gain weight with SBS, but I damn sure gained muscle.
I can’t really gain weight with SBS, but I damn sure gained muscle.

College was somewhere I thought I could change who I was. I didn’t really pay much of the attention to the social side of life in high school, and that same trend continued into my freshman year at NJIT. I was a commuter, so I didn’t engage with many people outside of the classroom. But I did find the next best thing though – the gym. The next four years I focused on training my body to new heights with SBS. I took a liking to Powerlifting and Strength Training. I probably have a problem… remember I said I never quit. I’m an addict in that sense I guess. I considered entering competitions for my weight class, something to this day I haven’t done (but I hold that hope in the back of my mind 😉).

With the close of my first year at a new school, I wanted the next to be different. My best friend told me about a new Fraternity colony he was a part of building and asked if I was interested. This was how I decided to engage more with the campus. To build something bigger than myself and leave a lasting mark. It also helped to have an awesome group of friends around to make the experience better. The path was difficult. NJIT is a school of over 75% commuters, so recruiting for a Greek Life organization is rather challenging. Pretty quickly, I wanted to make a difference. I became “Colony” President (at the time), and my goal was to charter our Chapter before my older peers graduated. Together, we were successful – becoming a nationally recognized Chapter on March 5, 2016. That culmination of hard work and determination made the journey that much better.

No more tube!
No more tube!

Oh! I didn’t mention a huge milestone along the way. Six years after living with a Broviac tube, I was able to have it changed for a port that sits under my skin. This means normal showers, the ability to swim again and now I’m a little less self aware. The only reason this was possible was because the specialists at Mt. Sinai have created a regimen for me that allows for just two nights a week of TPN. When I started this journey, I was being infused with that stuff every day of the week. It’s a huge quality of life benefit to remove even just a few hours of that.

Building a Better Future…

The love of my life.
The love of my life.

I met my fiancée through my Fraternity. By pure chance, we met and hit it off instantly. I knew within just a few dates that she was who I wanted to spend the rest of my life with. From meeting her, my life started to trend upwards. I was able to get my first few jobs thanks to her and her family. We moved in together several years ago, buying our first home, and since then we’re now engaged! We have two crazy pets together (see them at the bottom of the post). I’m proud of the life we’re building and hopeful for the future because I know she’s with me.

It was because of the circumstances I had to go through that I am where I am today. I sometimes ask myself how different would life be if Jan. 30, 2009 never happened? I may not have focused so hard on school. I may not have gone on to NJIT, meaning I wouldn’t have met my friends or started a Fraternity Chapter. That means I wouldn’t have met my fiancée, or worked where I did. It is pretty crazy to consider how quickly this life would be different if the events of just one day were changed.

Somewhere along this journey, I grew a passion for entrepreneurship. Turning one of my hobbies into a career. I have a vision of building something from the ground up. Maybe that’s because I’ve spent years now building myself back up. Or it could be thanks to the experience of building a Fraternity. Who knows? But I recently set my visions on building Anthology. This was born of a few passions. I get to look back on my life through the pictures, through the stories and the memories and relive those experiences. If you’re still reading this – thank you! – then you’ve already gotten a snapshot of my life. That’s a dream come true. I like the idea of being able to capture memories in time capsules. That’s what photography is to me. I’m just a hobbyist, but I like going to parks, traveling and taking photos where I go. Even if just for my own sake, it still gives me the opportunity years from now to retell these experiences to future generations.

Anthology is the culmination of this passion but magnified. At the time of writing this, we’re developing the platform, but I’m beyond excited to show you what we have in the works. And hello future folks: if you happen to come across this after Anthology has launched, I hope we can have the pleasure of meeting. I enjoy having discussions with new people, so please feel free to sending me a message.

If you’ve made it this far, I’d like to thank you for reading my story. I hope this can bring awareness to some of the struggles people with SBS live with. And I hope it can inspire you to push through the obstacles that you have in life, regardless of what they are. Never give up. Never quit. Keep writing your story.

Our first nugget -  Benji the Samoyed
Our first nugget – Benji the Samoyed
Kai - She’s  very  rambunctious
Kai – She’s very rambunctious

<strong>Will Ciolino</strong>
Will Ciolino

Will Ciolino is an Entrepreneur, Engineer and Hobbyist Photographer who has spent time in Small Business, Manufacturing, and a Fortune 500 company as a Mechanical Engineer and 3D Printing Expert. In his spare time, Will has built small businesses in the fitness industry; has focused on finding gig-economy type side-hustles; and is Founder and CEO of the photography platform, Anthology.

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