Living with Crohn’s Disease: A Profile on Alie Santin

      Alie Santin’s summer started like any other. As a seventeen-year-old student at Oyster River High School, she spent her days off relaxing by her family’s backyard pool and jumping on their new trampoline, both of which gave her an outlet for her self-proclaimed high levels of energy. Santin shared the same excitements for her upcoming senior year as all of her friends: gladly cashing in her upperclassmen status for the security of a parking pass, finally getting to claim a locker in the core, and proudly painting her face blue during her class’ last spirit week.

      If you looked at Santin’s senior photo, you would believe that everything was setting up for this perfect year. Nobody suspected anything out of the ordinary, with the exception of Santin feeling unusually full during meals and some mild stomach pains while eating. Brushing it off as a lactose or gluten intolerance, she continued the activities she loved until the mild pains became excruciating and she stopped eating altogether in the weeks leading up to her long-awaited senior year.

        Flash-forward to the evening of January 25th, 2019. Midterms week has just ended at the high school, but Santin was not enjoying the same post-exam freedoms of her classmates, many of whom were dancing the night away at the Snowball Winter Formal. Instead, she had just woken up from a three hour surgery at Lahey Medical Center in Burlington, Massachusetts.

       The procedure, a bowel resection, removed eight inches of Santin’s small intestine and four inches of her colon, along with her appendix to prevent future infection. After enduring five months of various health issues and their subsequent treatments, doctors hoped this surgery would finally be a long-term solution to Santin’s diagnosis: Crohn’s Disease.

      Crohn’s is an inflammatory bowel disease (IBD) that occurs when parts of the digestive tract become inflamed during an immune reaction. In Santin’s case, the inflammatory flare-ups were primarily located in her small intestine and were what had been responsible for her pain.

      “It all started when I would get really full after meals during [the month of] June. I would eat maybe half of a sandwich and it would feel like a full Thanksgiving dinner,” said Santin. “At first, I thought I was just eating too much or eating unhealthy options, but then it got to the point where even a few bites would result in me being full and having intense pain.”

      Santin kept this pain a secret in the beginning, explaining, “I didn’t tell anybody for the first few months because I thought it was nothing or just some kind of sickness that would pass. It wasn’t until I only had a few bites of soup one day and was full that my grandmother suggested I should see the doctor, so I did.”

      Santin’s mother, Stacie, explained this first step towards diagnosis. “We went to the pediatrician and [Alie] got blood work and a few other tests done. But, it was taking time and everything just kept getting worse from there.”

      Eating was still painful for Santin, and she was beginning to see the effects in other parts of her life. “I couldn’t really eat anything and I just felt off all the time,” Santin explained. “I started getting fatigued and eventually became anemic, which is when you’re really exhausted and feel like you can’t do anything.”

      It was following a trip to Urgent Care for extreme pain that the Santin family was left wondering what was really going on with Alie. They then decided to consult a gastroenterologist, which is a doctor specializing in the stomach and intestines. This decision was also influenced by the fact that Santin’s father, Peter, had experienced digestive issues in the past due to ulcerative colitis, another inflammatory bowel disease.

      It was now mid-July, around a month since Santin had first started showing symptoms. The gastroenterologist provided the Santins with the first major clue towards a diagnosis of Crohn’s Disease by ordering a MRI and colonoscopy for Santin at the end of the summer. Both tests were conclusive, but Santin noted that, “the diagnosis was a bittersweet moment. After weeks of tests and worrying, we had finally found out what was up but it was also hard to hear.”

      Though treatable with preventative or responsive methods, there is currently no cure for Crohn’s Disease. “I would compare [the diagnosis] to failing a test at school and still being upset when you get it back. You kind of knew what going to happen, but it’s hard regardless. The same goes for a chronic illness, but you’re realizing that you will have to live the rest of your life with it,” explained Santin.

      After being officially diagnosed, Santin began her first treatment of intravenous (IV) iron infusions the day before school started. “It was a lot at once. Senior year is already overwhelming with college applications and figuring out your future, but having [Crohn’s Disease] hanging over your head at the same time was hard,” recalled Santin.

      Following the responsive treatment of iron infusions for nutrient replenishment, antibiotics and steroids were prescribed. “Steroids are a tricky thing because you don’t want to take too high of a dose right away, but you still want them to be strong enough to work,” described Santin’s mother, Stacie.

       Santin quickly experienced the steroids’ negative effects. “[The steroids] would keep me up all night while I was still tired and in a lot of pain. I just wanted to sleep so it would go away, but it was impossible.”

      Alongside experiencing side effects from her numerous medications, Santin was faced with several emergency hospital trips during the first few months of the school year. “My first hospital stay was for a few days in November because of an abscess on my lower intestine,” she described. Santin went on to explain, “when you get flare-ups from Crohn’s, everything inside you gets inflamed and it can cause blockage or abscesses, like in my case.”

      Another blockage would later call for a CAT scan and an eight day hospital stay in December, which extended into the new year. “Doctors initially thought I would need surgery to remove the part of my small intestines that was getting flare-ups, but we didn’t expect it to be as soon as January. In fact, we were planning on February break until things kept getting worse,” said Santin. “I actually would have had the surgery sooner, but we had to wait until all the steroids were out of my system as a precaution.”

     Following her operation on January 25th, Santin stayed at Lahey Medical Center for six days. Alongside the countless doctors, nurses, and residents who kept an eye on her were Santin’s parents, who shared a single hospital cot on the floor in order to be closer to their daughter.

      The evening following her surgery, Santin awoke in suspense. She didn’t know if the doctors had been able to save the function of her intestines or if she would have to live with a colostomy bag. Thinking back to her days spent by the pool and on the trampoline, she was praying for anything but the latter.

      In the recovery wing, Santin breathed a sigh of relief when she was told that enough of her intestines had been saved and that a colostomy bag would not be needed. After being wheeled back to her hospital room, she settled in for a long few days of pain, stiff limbs, and dinners made up of juice and shaved ice.

      Since the surgery, Santin is excited to return to what she’s been missing from her senior year. “Now that the doctors have taken out the really bad part of my small intestine, I’ve been able to eat a lot more things. I happy cried the other day when I realized that I could finally eat everything that I want to. It may not seem like a huge triumph to some people, but to me, it really is.”

      Victoria Leitz (‘19), one of Santin’s close friends, recalls a moment when things were beginning to return to normal, saying, “Alie also never got to eat her favorite foods, let alone any food at all. I remember getting texts from her where she was just overflowing with excitement because the nurse was letting her eat a piece of toast. To her, that was one of the best moments that she had experienced in a while.”

      Santin remembered the same moment with similar enthusiasm. “I couldn’t have food for days after my bowel obstruction and I was on a liquid only diet. So when they gave me that singular piece of toast,  I was so happy. Compared to everything that I had gone through when I first had my bowel obstruction in December, that one piece of toast was a huge victory.”

      From there, Santin set out to make a “Food List,” which included all the foods she had been unable to eat since the summer. “All I could think of when I first saw it was how much it looked like a little kid’s Christmas List,” said Santin’s father, Peter. “She was so excited to eat all these foods that others don’t even think twice about.”

      For Santin, the list was not just about the things she missed, but also a way to move forward. “It’s been awesome to check foods off the list and start moving back towards how I felt before my diagnosis. Since Crohn’s Disease isn’t always physically apparent, I have had people tell me that ‘I don’t look sick,’ when really, I’m hurting a lot. I wish people would understand sometimes,” she explained.

      For now, Santin is continuing antibiotics and steroids, along with weekly injections to prevent further flare-ups. Santin also needed medications through an IV for several weeks following surgery, which oftentimes entailed meeting her mother at school to take time out of her day for an infusion.

      “Missing school was difficult, so I had to ease back into it following surgery. Since stress can cause flare-ups in Crohn’s, I need to be careful about how much I take on,” said Santin, who is working with administration and the counseling office to figure out the best plan for making up the work she missed while in the hospital.

    Despite the struggles, Santin is excited to get back to school without interruptions. “I know it’s hard to believe, but I miss my classes and the work. Not seeing my friends and not knowing what’s going on with everyone has been one of the hardest parts of having Crohn’s; I feel like I’ve missed so much of what is supposed to be the best year in high school.”

      Santin’s friends shared these sentiments. “Before her diagnosis, Alie’s life was much more easy-going. She lived every day the way she wanted and loved every minute of it,” said Leitz. “I don’t think anything could have prepared her for this outcome once she started feeling different. After she was diagnosed with Crohn’s disease, it became obvious that her whole life had been flipped upside-down.”

      Edwin San Juan (‘19), another close friend of Santin’s, touched upon how he has seen Crohn’s Disease impact her social life, saying, “the hardest thing I imagine she has to face is constantly being separated from her friends due to hospital visits and pain from Crohn’s.” San Juan also noted that despite this, Santin’s friends are hopeful for the future. “Prior to her surgery, our friend group was very limited in what we could do and for how long, and I’d always be worried about if she was in pain or not. Now that she’s basically able to eat what she wants again, I’m looking forward to having Alie get her freedom back.”

       Despite the uncertainties of her situation, one thing is clear: Santin has remained optimistic through all odds.

      “Even with her illness she’s never failed to put a smile on our faces and brighten up our days,” said San Juan. “Her life has been much more difficult and she’s faced many hard times, but she never fails to bring a smile to our faces.”

      Leitz agreed, adding, “I can’t begin to describe how amazingly Alie has handled her entire situation. She has always been a positive person, which is one of the many reasons why people love her. But her disease turned her positivity into not just one of her qualities, but one of her strengths,” she said. “There were so many moments where she could have let the world know how she was feeling and complain, but instead she focused on the positive things in her life, even if they were so little.”

      Santin described these little things as, “being able to call friends while in the hospital,” and, “getting to help residents learn at the teaching hospital during rounds.” Now that she is back at home and recovering, Santin continues to find happiness in successes like climbing the stairs without feeling tired and driving herself to Panera Bread for lunch with her friends.

      Though the results of Santin’s long-term fight against Crohn’s Disease may not be predictable, she is hoping to use her current experiences to help others in the future. “I want to major in Psychology in college with an end-goal of being a therapist,” explained Santin. “Since I’ve seen the effects chronic illness can have on a person, I want to help people realize that there is support and that they’re not battling their disease alone.”