It was May 2018, the end of my senior year of college. I was going out with my friends to celebrate our remaining college days together. I had been accepted into graduate school to study for a master’s degree in public policy and was in a relationship. At this point in my life, I thought nothing could go wrong. That’s when everything started to go wrong.

One night, when I was in the bathroom, I saw blood in my stool. Shocked and scared, I went to the doctor’s office on campus to see the physician’s assistant. She reassured me it was an anal fissure and it would go away on its own. 6 months later, it didn’t go away. The bleeding got worse, and I also started having diarrhea and needing to rush to the bathroom. I went to see a gastroenterologist, who performed a colonoscopy on me. The results showed that my entire colon was inflamed and covered with ulcers. My doctor diagnosed me with an autoimmune disease called ulcerative colitis. Ulcerative colitis is a form of inflammatory bowel disease where the immune system attacks the large intestine.

Symptoms can include:

This was the last thing a 22-year-old wanted to hear, as he began his young adult life after college. My doctor told me not to worry. He said I looked healthy and prescribed me a medication that would take 6-8 weeks to work. It didn’t work, so I sought out different opinions from other gastroenterologists who put me on various types of medications. They didn’t work either. Determined not to let the disease defeat me, I took matters into my own hands to control the disease. I tried everything—dietary changes, supplements, meditation, celery juice—but nothing worked. By the summer of 2019, I was going to the bathroom 12-24 times a day, which resulted in me dropping to 101 pounds.

I noticed people in public, or even my friends and family, looked at me differently due to my frail state, as if I were an alien, or with pity. People looked at me like I wasn’t capable of anything, as if I lacked independence or strength. I would say to them in my head. “Watch me. Watch me become healthy. Watch me get into the best shape of my life. Watch me take it all back.”  I told myself I would get into the best shape of my life and return from this disease stronger than ever.

The only thing I could do was lie in bed, watch TV, or play video games, and try to escape my harsh reality, all while continuing to be on a strict, bland diet. Sometimes, I looked out my window on a sunny June day, wondering if I would ever leave my room, which had become my prison cell.  At other times, I watched my friends move forward with their lives on social media while I was far behind them, chained to the toilet.

That’s when I met with a new gastroenterologist in June. He said, “You’re in the driver’s seat, Matt. You make the decisions about what you want to do. Your providers are here to help direct you in the best possible direction to improve your quality of life.” Those words empowered me at 103 pounds. I started to take my turn in the driver’s seat. I quit the holistic diet because it wasn’t helping, and decided to go on an autoimmune medication called Remicade that my doctor advised from the rear seat.

It immediately put me in remission. I started working out again, eating healthier, and living again. I had a newfound perspective on life, appreciating all the little things, such as walking up and down the stairs and being free again. I decided to celebrate with my friends in August 2019 by throwing a party, but I experienced another flare that night. From August to September, I went to the ER three times. By the third time, I met the director of the IBD center of the hospital where I was staying, and they advised that I had to have my colon removed. I was in shock, thinking I needed more Remicade because that was what the doctors had recommended. Still, they said my colon was too inflamed, and I had to live with an ileostomy.

An ileostomy is when the end of your small bowel is brought through an opening in your belly called a stoma. A bag that holds your stool goes around it through that opening. When I heard this, I broke down and cried. I did not want to have my colon removed. I thought I would never be in a relationship and believed people would treat me differently. My only other option was to go on another medication that would severely weaken my immune system, and I was told some patients didn’t survive that route. However, my surgeon presented me with another option: a J-pouch.

A J-pouch is where the surgeon shapes the end of the small intestine into a ‘J,’ allowing me to use the bathroom without an ileostomy or colon. It was a three-part surgery. After removing my colon, I would live with an ileostomy for three months. Then, at the third-month mark, have the J-pouch surgery while living with a temporary ileostomy for another three months. After another three months, the doctor would reverse the stoma, removing the ileostomy. I decided to follow through with this plan. The day before I had my colon removed, one of the residents told me, “We’re here to save lives, not colons.” Although my life was being saved, it felt over. I was confused, powerless, and misunderstood. Questions ran through my head. Why is this happening to me? What did I do to deserve this? No one understands what I’m going through. What will happen? Then, Andrew came in.

I knew there was something about him when he confidently walked into my room and lit it up with his bright smile. Andrew described to me his previous patients who were as sick as I was and about to have their colons removed. He told me how much they improved, how the color returned to their faces because of the ostomy. He reassured me with hope, saying I would gain weight and be free to live my life. As Andrew marked where the ostomy would be on my body, the fear and hopelessness I had felt started to turn into excitement. That’s going to be me, I thought. Like his patients, I’ll be healthy again; maybe the ostomy won’t be so bad. After I had my colon removed, he showed me how to live with an ileostomy and change the bag step by step.

He encouraged me along the way, saying he wasn’t worried, knowing I would get it down.

He viewed ostomies with immense positivity, such as calling the one I wore a Gucci bag and telling me that patients name their ostomies, so I called mine Alejandro. Andrew told me something I’ll never forget when I was about to leave the hospital on a Tuesday. He said, “I love ostomies. I want patients to master living with them so they can live again.” At that moment, I became proud to live with an ostomy. Andrew changed not only my perspective on ostomies but also my perspective on life. I asked him, “Do you think I’ll be okay going to my friend’s housewarming party this Saturday in Hoboken?” And he said, “You go to ‘Boken. If you feel good, you go and have a fun night.” That’s precisely what I did. I went to that party weighing 113 pounds and feeling more confident than ever. Throughout the next two months, I gained weight, expanded my diet, and developed a new, grateful, and confident outlook on life, which made me appreciate all the little things life had to offer, all thanks to Andrew and Alejandro.

In November 2019, I consulted with my surgeon about the J-pouch surgery. He told me I was to get a new type of ileostomy bag. I asked my surgeon if Andrew could teach me how to use the new ostomy. He said nothing and then brought in the department’s head ostomy nurse. I asked her if Andrew could teach me how to use the new ostomy bag. That’s when she put her hands on my knees and said, “I’m sorry I have to be the one to tell you this, but Andrew passed away.” I went into shock. The man who gave me so much positivity and pride in my new lifestyle will never see me healthy and confident. He will never know the impact he made on my life. He will never hear me say, “Thank you for changing my life.”

My J-pouch surgery was in December 2019, and unfortunately, I had many complications. I started to have very high ostomy output. I could barely eat, had intense heartburn like my chest was on fire, and would vomit multiple times a day. In February, I was in the hospital for three weeks with the medical team, trying to slow my output down and examining me to see if anything else was causing my complications. My surgeon decided to close my ileostomy up early. Sadly, I was not getting better and was back down to 105 pounds. I got diagnosed with pouchitis within two weeks of being home at the start of the COVID-19 pandemic. Pouchitis is inflammation in your J-pouch, causing symptoms similar to those of ulcerative colitis. Treatment with antibiotics is effective in most cases, but it can persist as a chronic condition for others.

On the antibiotics, I felt as if I had a normal J-pouch. As soon as I got off them, I went back to the bathroom multiple times. My doctor diagnosed me with Crohn ‘s-like pouchitis. I knew something wasn’t right, especially since I saw all these problems after my J-pouch surgery. That’s when I decided to research another doctor, and that’s when I found Dr. Remzi from NYU Langone Health, whose specialty was redoing J-pouches.

Meeting with Dr. Remzi, he told me two things that no other doctor told me: “You’re going to have a great life, and we’ll take great care of you.” I had visited five different doctors, and not one of them had filled me with hope as Dr. Remzi did. Those words resonated with me so profoundly that I felt I had found the right doctor to help me regain my life. Dr. Remzi advised that I had to go through all the surgeries again. The plan was to provide me with a temporary ileostomy in July 2020. Six months later, I performed the J-pouch surgery again, and then finally closed my ileostomy three months later. I didn’t mind this at all. I was excited. I was thrilled to regain my ileostomy and regain a sense of normalcy.

NYU’s team and my surgeon provided me with immense help through compassionate care, encouragement, and support at every step. Over the next two years, I redid every surgery I went through. On March 29th, 2022, I had the final surgery that closed the door to my four years of pain and opened a new one to the best years of living my life to the fullest and in biological drug remission.

Since the closure, I’ve been living my life to the fullest once again. I still go out with my friends, am in the best shape of my life, spread awareness of IBD, and now work at NYU Langone, where I also spoke at a TEDx talk hosted by the institution. Throughout these years, I’ve learned many lessons. I wouldn’t be here today speaking so highly of my journey if it weren’t for them. Always be grateful for the little things, such as going up and down the stairs, your family, and your friends. Embrace your body, scars and ostomy included, and show them off. Remember that doctors are here to save lives, not colons. Put yourself first. Don’t push yourself if you’re not feeling well and have backup plans in place. There will be many other times to have fun, and healing should always be a priority. Most importantly, believe in yourself. You’re a lot stronger than you think.

Having IBD can be scary. Everyone has a different experience, whether undergoing multiple surgeries or staying in remission through biologics. Still, we’re part of a community that wants to help each other as much as possible because we know the struggle of having the disease. There is a light at the end of the tunnel, and we can live life to the fullest because that’s what Andrew wanted.

If I could change something about the medical or insurance system, I would have it forgo step therapy so that patients can be approved for medically necessary treatment without going through a line of medications. If I didn’t have to go through step therapy at the beginning of my treatments and went straight to a biologic, I might not have had these surgeries. I may not have lost time in my life, the countless nights I couldn’t sleep, the days I was endlessly in the bathroom, chained to the toilet, throwing up constantly. This pain could have been avoided. If medically necessary, patients should be able to bypass these laws to prevent suffering and get back to enjoying their lives sooner.

I want medical providers to know that they should never tell a patient, “Don’t worry about that option,” or describe biological treatments and ostomy surgeries as a “last resort.” These words can scare patients and prevent them from fully considering their treatment options. Some people would rather risk losing their lives than receive the treatments. Medical providers need to communicate about these treatments in a manner that highlights the positive outcomes and the significant benefits they can bring to patients’ lives.

I wish people understood that although there are times when we seem weak when our strength is low, people with chronic illnesses are some of the strongest people. They can endure the symptoms of their disease, navigate their care, and serve as their own patient advocates. That’s a great deal one must endure, making us more resilient than most.

Some of the resources I used included talking to friends and family, and consulting a new dietitian to navigate a new way of eating that would benefit my body and not exacerbate my symptoms. Going to the gym was one of the most significant physical and mental resources I had. I was 101 pounds, feeling weak on the outside and the inside. However, once I had control over my symptoms with a new healthcare team and treatments, I started to gain weight and lift weights, which got me to 150 pounds. Seeing myself in the mirror, I still can’t believe how I look. I never thought I would be able to achieve this in my life, let alone with an autoimmune disease. Still, I wanted to prove that I could do it, be healthy, and retake control of my body, which raised my confidence to new heights.

I want patients to know that treatments such as receiving biologics or having an ostomy are life-changing options that can help them live their lives to the fullest again. I was scared to have an ostomy, scared to have Remicade, thinking these treatments would affect me worse in the long term. Andrew taught me differently. He showed me that I could wear my Gucci bag proudly, have a cheeseburger, and be with my friends because my ostomy and treatments allowed me to do so. I don’t want patients to feel as if their lives will be over, that their bodies will feel abnormal. I want them to know that they should embrace the change, embrace their bodies, embrace the treatments, and their Gucci bags because they will allow them to live again, to travel to that country they always wanted to go to, to go on that date with that person, to live life to the fullest.

 

The Infusion Access Foundation provides the resources needed within a community for those with autoimmune diseases to learn more about their specific disease and prepare for the treatments they may receive. They also advocate for laws affecting patient care, such as step therapy and the 340B drug program. The Infusion Access Foundation puts its heart into its work. It demonstrates its care by visiting Capitol Hill, bringing patient advocates to meet with legislators, and sharing with them how these laws have impacted our lives, futures, and treatments. The hope they give will guide patients to a healthier and safer future.