- July 15, 2022
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- 18 minutes read
Sydney Morgan Tells Her Ulcerative Colitis Story – Healthline
Sydney Morgan might have been what most would call a “typical” teen. Halfway through high school, she had plans of running track and field in college.
Life had other plans.
Morgan began to have unexplainable symptoms that seemed like a stomach bug at first blush. However, her recurring symptoms, like fatigue, low energy, and frequent trips to the bathroom, pointed to something else.
After 4 months of experiencing symptoms, Morgan reached a turning point.
“I was on a road trip with a friend and we were going to be in the car for 10 hours,” she explains. “I didn’t eat the day before because I didn’t want to have to stop to go to the bathroom. I finally said, OK, I need to do something about this.”
Morgan had been doing web research to help her understand her symptoms. Her research led her to an article on ulcerative colitis.
From the car, she texted her mom a screenshot of the article. “I think I have this,” she confessed.
After that, Morgan started the whirlwind of doctor’s appointments and emergency room visits that led her to a diagnosis.
“The first time I went to the doctor, I was embarrassed to talk about my symptoms,” she recalls. “I said, ‘I want to see a female doctor, not my normal male doctor.’”
Morgan was sent to the ER for testing for 2 days. When the ER doctors told her she wouldn’t be able to get a colonoscopy for 2 months, she was discharged without treatment or answers.
“Meanwhile, I was going to the bathroom 30 times a day,” she says. “I couldn’t leave my house. I was in pain constantly.”
After another week, Morgan returned to the ER for testing.
“I was in there for 2 weeks doing lots of bloodwork testing, colonoscopy, endoscopy, lots of scopes. They came to my room and told me I have UC (ulcerative colitis),” she says.
The news came as a shock.
“For them to come in and tell me this is something you’re going to be dealing with for the rest of your life was really overwhelming, very scary,” Morgan shares. “Until that point, I had never heard of Crohn’s disease [or] ulcerative colitis.”
Both Crohn’s disease and ulcerative colitis affect the bowel but in different ways.
Luckily, Morgan had a supportive doctor.
“Dr. Sapana Shah was my pediatric gastroenterologist and has been with me since Day 1 of my diagnosis and throughout the duration of my colitis journey,” Morgan shares. “She went above and beyond as my doctor, but as time went on she became a friend.”
After that, Morgan began a series of trial-and-error treatments to find what worked best for her, starting with high doses of steroids.
“Those have very rough side effects, especially for a 16-year-old girl. Lots of weight gain and facial swelling,” she shares. “I was very embarrassed to go to school because not everyone knew what I was going through, and I didn’t want to explain it to them. They just knew that I looked different.”
When it comes to Crohn’s and colitis, there’s no uniform treatment. Morgan tried numerous medications to see if any might help her symptoms and get her into remission.
“There’s no way to know what medicines will work on different people. There’s still a lot of research being done,” she says. “Nothing really worked for me except the steroids — and I hated them — and you can’t be on them long-term.”
After a year of medication-hopping, Morgan went in for another diagnostic exam that turned into emergency surgery to remove her large intestine.
“I went in to see my doctor and the surgeon and I thought it was just a consultation. He said, ‘I had a cancellation, do you want to get your colon out tomorrow?’ and I replied, ‘Oh my god, I’m not ready,’ but I did end up getting it taken out the next day.”
Due to postsurgery complications, Morgan was in the hospital for 2 months.
“It was really hard,” she says. “I had to have around-the-clock wound care and there was just a lot happening.”
In the midst of the stress, Morgan found support from her nurse.
“Jen Jones was my wound care nurse,” she shares. “She shared my love of makeup, and talking about that with her helped take my mind off my medical issues, which were pretty severe at the time. She even brought me makeup and hair products to the hospital to cheer me up.”
After she recovered from surgery, Morgan wore an ostomy bag, a small pouch to expel waste from the body, for about a year. She then underwent two more surgeries.
The first was a J-pouch surgery, a procedure that utilizes the remaining small intestine to form a pouch that functions in place of a colon. Next was a reconnective surgery to remove the ostomy bag and connect the J-pouch to the rest of the digestive tract.
Now, Morgan is free of her ostomy bag and able to have more agency in her day-to-day life, though there are changes she’s still getting used to.
“I still deal with some symptoms, but I’m pretty much the closest there is to cured now since they took out all of that diseased part of my colon,” she says.
She still experiences fatigue and notes that she has to stay on top of drinking water and taking nutritional supplements since she can’t absorb nutrients as well without a colon.
“It’s hard for me to realize that I can’t keep up 100 percent with people who are healthy and have a colon,” she shares. “I just have to take breaks more often. It’s hard.”
Still, Morgan doesn’t let it get her down.
“I didn’t let it consume me. I live in the present and take things one day at a time,” she says.
She also turned to hobbies, her medical team, and family for support.
— Sydney Morgan
Morgan used her time in the hospital to look for silver linings.
“I was on the therapy dog list, so I got at least one dog every day to come and say hi to me,” she says. “My mom would buy little dog toys and treats for them so the dogs liked coming to my room, and that helped me a lot through diagnosis.”
Morgan also made a new friend through the therapy dog program, volunteer David Anderson.
“He would bring his dogs Anna and Clarence to my hospital room literally every single day to say hello, even if he wasn’t assigned to my wing that day. They always brightened my mood and were the highlight of my day.”
The experience inspired Morgan.
“I plan to train a dog of my own later in life to be a therapy animal and volunteer at local hospitals,” she says.
Having a lot of downtime also led Morgan back to a lifelong passion for art.
“I did a lot of artwork in the hospital and at home because I couldn’t really go out and do anything,” she says. “I needed a hobby that I could do by myself without too much physical exertion. I had been an artist my whole life, so I really got back into it when I was in the hospital.”
A return to her artistic side along with encouragement from nurses led Morgan to something she didn’t expect: life as a makeup artist, model, influencer, and advocate.
“I had been playing around with makeup and volunteering in my community to do face paint on kids at local events, but I really started taking the pictures and videos after diagnosis,” she says.
The rest of the nurses at the hospital got on board to support Morgan’s budding hobby.
“There was a makeup palette that I really wanted [that] was going to be hard to get because it was going to sell out really quickly,” she recalls. “I probably had 10 nurses in my room all on the website refreshing [the page] because they were like ‘We need Sydney to get this palette!’”
The teamwork paid off. “I did get it!” she shares excitedly.
When asked if she had any advice for others embarking on a diagnosis journey, Morgan had this to say.
Having a hobby “gave me something to do and helped me to feel like I was being productive or creative through that time [in the hospital],” Morgan says.
She also emphasizes that finding a balance between staying positive and validating your feelings about diagnosis, treatment, and anything that comes up as a result of living with a chronic illness is crucial.
“Stay positive through it,” she says. “You’ll get to the bottom of it and all your feelings are valid.”
Morgan also emphasizes the need to have someone to talk with. This can be a loved one, a community member, or a therapist.
“They had me seeing a behavioral health professional while I was inpatient to talk to and help me through getting the ostomy bag because it was a big transition for people my age,” she shares. “I think having someone to talk to is very important.”
She also suggests making friends within your chronic illness community.
“I found a lot of my closest friends through the Crohn’s and colitis foundation,” she says. “It’s just really nice to talk to people that have gone through what you’re going through… and it’s just good to have a community.”
You can find supportive communities for people living with a number of chronic conditions, including ulcerative colitis, on Healthline’s Bezzy platform. Check out Bezzy’s IBD Community here.
Morgan also suggests finding community and quality doctors through the Crohn’s & Colitis Foundation.
These days, Morgan has a major Instagram, TikTok, and YouTube following. She uses her platform to share her makeup creations and her resilient spirit, as well as advocate for others going through similar experiences.
“I feel like people just don’t talk about [ulcerative colitis] as much as they should,” she says. “That’s why I’m such an advocate for it because when I was doing my research there was just not a lot there.”
Morgan currently works with the Crohn’s & Colitis Foundation as a Take Steps National Ambassador. She also actively helps local children’s hospitals that specialize in pediatric treatment for chronic illnesses.
She recently participated in the Los Angeles Take Steps event and spoke at the Pittsburgh Take Steps event.
Morgan both produced and acted in Kindling, an upcoming thriller. A portion of the proceeds from the film will be donated to The Trevor Project and the Crohn’s & Colitis Foundation.
As far as her plans for the future, Morgan is focused on the here and now.
“I’m very much taking things day by day,” she says. “I want to do it all. I like trying everything, so I’m just going to continue being creative.”
“I think going through all of that really just made me want to do what makes me happy in life. You don’t know how much you have so I want to enjoy every minute,” she says. “It gave me the confidence and the fire to pursue my passions and my dreams which ultimately led me to where I am now.”
When it comes to what could have been, Morgan doesn’t look back.
“If I didn’t get diagnosed with UC, I’d be in college somewhere running track and field,” she says. “People ask all the time, ‘Would you change your diagnosis or do you wish you never got it because of all the pain you went through?’”
Her answer is, “Definitely not.”
“I’m so grateful that I get to be an advocate and share my story with others,” she says. “I truly believe that everything happens for a reason and things ended up the way they’re supposed to be.”
Crystal Hoshaw is a mother, writer, and longtime yoga practitioner. She has taught in private studios, gyms, and in one-on-one settings in Los Angeles, Thailand, and the San Francisco Bay Area. She shares mindful strategies for self-care through online courses. You can find her on Instagram.
Last medically reviewed on July 13, 2022
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