Sydney Morgan’s Ulcerative Colitis Diagnosis
Most would call him a typical teen. She had a plan to run track and field in college.
Life had other plans.
Morgan had a strange symptom that seemed like a stomach bug. Her recurring symptoms, like fatigue, low energy, and frequent trips to the bathroom, pointed to something else.
Morgan experienced symptoms for 4 months.
“She was on a road trip with a friend and they were going to be in the car for 10 hours. I didn’t eat the day before because I didn’t want to stop to go to the bathroom I said I need to do something about it.”
Morgan had been doing web research to help her understand her symptoms. Her research led her to an article on ulcerative colitis.
She sent her mom a picture of the article. She confessed that she had this.
Morgan went to the doctor and emergency room for a number of appointments that led to her diagnosis.
“She says she was embarrassed to talk about her symptoms at the first doctor’s office. I said I wanted to see a female doctor.”
An ER merry-go-round
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.
“She says she was going to the bathroom 30 times a day. I couldn’t leave my house. I was in pain all the time.”
Morgan went back 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.
Arriving at a diagnosis
The news was 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.”
“The bowel is affected by both Crohn’s disease and ulcerative colitis.”
Morgan had a doctor that was supportive.
“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.”
Finding the right treatment
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. She shares that there was a lot of weight gain and facial swelling. I was embarrassed to go to school because I didn’t want to explain what I was going through to them. They 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 is no way to know what medicines will work for different people. There is still a lot of research being done. Steroids worked for me, but I hated them and they can’t be used for 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 to see my doctor and the surgeon and thought it was a consultation. I was told that I had a cancellation and that I should get my colon out the next day.
Morgan was in the hospital for 2 months due to post surgery problems.
She says it was hard. There was a lot happening and I had to have wound care around the clock.
Morgan found support from her nurse during the stress.
She says that Jen Jones was her wound care nurse. She shared her love of makeup and that helped me forget about my medical issues, which were pretty severe at the time. She 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.
Morgan is free of her ostomy bag and can have more agency in her day-to-day life, though she is still getting used to it.
She says that she is the closest to cured since they took out all of her colon.
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.
“She says that she can’t keep up with people who are healthy and have a colon. I have to take more breaks. It is hard.”
“Morgan doesn’t let it get her down.”
“I didn’t let it consume me. She says she lives in the present and takes things one day at a time.”
She turned to her family, her medical team, and hobbies for support.
“I didn’t let it consume me. I live in the present and take things one day at a time.”
Morgan spent time in the hospital looking for silver linings.
She says she got at least one dog every day to come and say hi to her. My mom would buy my dogs toys and treats so they would come to my room, which helped me through diagnosis.
David Anderson was a new friend for Morgan through the therapy dog program.
“Even if he wasn’t assigned to my wing, he would bring his dogs Anna and Clarence to my hospital room to say hello. They were the highlight of my day and always made me happy.”
Morgan was inspired by the experience.
She plans to train her own dog to be a therapy animal and volunteer at hospitals.
Morgan was able to return to his passion for art because of the amount of downtime.
“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.”
“Morgan didn’t expect to become a makeup artist, model, and advocate after returning to her artistic side.”
Diving into makeup
She says she started taking pictures and videos after she was diagnosed with cancer.
The rest of the nurses at the hospital supported Morgan.
She says that the makeup palette she wanted was going to sell out quickly. The nurses were in my room refreshing the page because they were so excited to get the new palette in Australia.
The team worked well. She excitedly says she did get it.
Morgan said she had no advice for others embarking on a diagnosis journey.
Find a hobby or passion
Morgan says that having a hobby gave him something to do and helped him feel productive during his time in the hospital.
Remember your feelings are valid
She emphasizes that finding a balance between staying positive and being positive about your treatment is important.
She says to stay positive. You will get to the bottom of it and all your feelings are valid.
Talk with someone
Morgan also emphasizes the need to have someone to talk with. This can be a loved one, a community member, or a therapist.
She shared that she was seeing a behavioral health professional while she was in the hospital to help her get the ostomy bag. Having someone to talk to is important.
Lean on family and community
She suggests befriending your chronic illness community.
She says she found a lot of her friends through the foundation. It is good to have a community and it is nice to talk to people that have gone through the same thing.
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.
“She says that people don’t talk aboutulcerative colitis as much as they should. I am an advocate for it because when I was doing my research there was 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.
Morgan is focused on the present and not the future.
She says she is taking things day by day. I want to do it all. I like being creative and I will continue to do that.
“I think that all of that made me want to do what makes me happy. She wants to enjoy every minute because she doesn’t know how much you have. It gave me the confidence and the fire to pursue my dreams and ultimately led me to where I am now.”
“Morgan doesn’t look back when it comes to what could have been.”
“She says she would be in college running track and field if she hadn’t been diagnosed with UC. People ask if you wish you never got a diagnosis because of the pain, or if you would change it.”
Her answer is definitely not.
She says she is grateful that she can share her story with others. I believe that everything happens for a reason and that things end up the way they are 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.