Learning to Be More Than Her Crohn’s
By Jill Waldbieser
Nicole Watson was diagnosed with a lifelong, life-changing illness at the same age most kids are getting their driver’s license.
“There was no one for me to relate to,” she says of her diagnosis with Crohn’s disease, an inflammatory bowel disease. “I used to think I was the only Black person with Crohn’s,” which at the time was thought to be most prevalent among the Jewish community and older people.
Nicole has dealt with countless medication changes and failed treatments, continuing complications from her disease, emergency room visits, and 10 surgeries in 27 years. She has also had to face health care disparities, including what she calls “uncomfortable situations with obtaining pain medication.” And she was devastated when an unsympathetic doctor told her she would never have children due to the severity and complexity of her disease.
Today, Nicole, 43, is a mother, and an advocate for herself and others. A resident of Columbia, Maryland, she works as a mentor, blogger, and certified mental wellness advocate. “Once I found my voice, I never wanted to lose it again,” she says. “That’s why I’ve been so passionate about being an advocate.”
Nicole stays active in groups and organizations such as Color of Crohn’s and Chronic Illness (COCCI), IBDMoms, Patients Rising, Ostomy Stylzz, and Green Heart University. She encourages others to be proactive in their own care.
“As patients, we are often reluctant to question medical professionals on their decisions, and we shouldn’t be,” she says. “Living with a chronic disease is hard enough, and we are all looking for relief. I share my journey to inspire, impact, and improve the disparities, stigmas, invisible challenges, and unspoken conversations in our communities.”
A PAINFUL DIAGNOSIS
Nicole first knew something wasn’t right when, at age 15, she began having frequent bouts of diarrhea and vomiting. She lost 50 pounds in three months, and another 50 by the time a specialist diagnosed her with Crohn’s disease about a year later.
Getting a diagnosis didn’t provide much relief, physically or emotionally. Treatment options for Crohn’s disease were not as advanced then as they are today, and as a teenage girl, Nicole didn’t have a lot of resources. She also had to confront the fact that her condition was chronic, that “this is not a scrape you put a Band-Aid on and it’s going to heal. This is something I’m going to have the rest of my life. It was hard to navigate,” she says. “Some days it still is.”
Crohn’s disease can cause chronic fatigue, body aches, bloating, headaches, abdominal pain, diarrhea, fistulas, edema, skin irritation, and several other extraintestinal manifestations on a daily basis.
The embarrassment of being an 11th grader who couldn’t control her bowels was almost as bad as the excruciating pain. Nicole was so worried about having an accident that she stopped participating in activities with her peers and skipped her own junior prom.
Shortly after her diagnosis, she was dealt another blow when her father passed away. “I went into a shell,” she says. “It was a really tough time for me.”
She remained in survival mode, dealing with her symptoms as best she could. The medications and supplements she took to shore up her low-fiber diet would pass right through, so she was constantly malnourished. In college, she recalls, “I was surviving on Oodles of Noodles and pretzels,” her ribs visible.
Anytime she went anywhere, Nicole would have to know where the closest bathroom was, and even that wasn’t foolproof. “By the time I hit my 20s, I was wearing Depends,” she shares. Over the years, she was hospitalized for inflammation, fluid retention, recurring fistulas, and vitamin deficiencies, as well as the sheer severity of the pain of a Crohn’s flare.
When she was 24, Nicole was elated to learn that she was pregnant. “I love children,” she says. “I always wanted to be a mom.”
But four months later, at the appointment where she was supposed to find out the sex of her baby, the nurse couldn’t find a heartbeat. Nicole was crushed to learn that not only had she miscarried, but according to the doctor, “who was blunt and had no empathy,” she would never be able to have children due to her disease and all the medications she had to take.
“This was my first pregnancy, and I didn’t feel any support from the doctor to even ask any further questions to understand why this had happened,” she says.
It wasn’t the first time, and wouldn’t be the last, that Nicole had felt dismissed and looked down on by medical providers. “The depression, anxiety, grief, and insecurities that I masked were tearing me into pieces,” she says.
She put on a strong front, deciding to be an amazing aunt to her nieces and nephews if she couldn’t have kids of her own, but realized: “I was showing up for everyone else except myself.”
Four years later, Nicole was stunned to discover she was once again pregnant. This time, however, her disease went into full remission. She didn’t experience a single flare the entire pregnancy, and in 2008, she gave birth to a boy.
“My son is my miracle,” she says. “There is profound joy in being a mother, especially after going through the grief of losing a child. Being his mom has allowed me to find myself in so many ways, and gave me strength to come out of the shadows of my darkness.”
After simply existing for so long in survival mode, she says, “I promised myself that from that day forward, I would do whatever I could to be there for my son.”
And she has, despite the challenges that life kept throwing her way. “Crohn’s is a beast,” she says. “I can wake up at 8 in the morning and feel perfectly fine, and by noon, feel like I was hit by an 18-wheeler truck.”
For a long time, she managed her symptoms with a low-fiber diet, biologics, compression garments, ointments, anti-inflammatories, antispasmodics, and other pain medications. Then, around 2015, Nicole suddenly began to have trouble going to the bathroom. She remembers being curled up in the fetal position on the bathroom floor from the pain.
Her surgeon said that in order to save her life, she needed emergency ostomy surgery the next day. The procedure created an opening, or stoma, in her abdomen for bodily waste to exit into a bag.
Post-surgery, Nicole took a selfie with her ostomy bag and posted it to social media. “The things that happen in our lives, that try to destroy us, don’t have to define us,” she says. “I am way more than my bag.”
The motivation to share came from a group called The Osto Beauties, a former group of fellow Maryland women living with ostomy bags and raising awareness. “After reading their stories, I wasn’t ashamed anymore,” Nicole says.
“Having an ostomy has its challenges,” she adds. “But it gives me the freedom of being able to enjoy life more and to continue to thrive in my journey.”
PAYING IT FORWARD
Initially, Nicole didn’t know how to navigate life after her diagnosis, and didn’t advocate for herself enough, including when she had her miscarriage. “But thankfully,” she says, “God had other plans.”
Now the mother of a teen who is almost as old as she was when she was first diagnosed, Nicole works hard to make sure others find their voices, too. She finds support in her faith and family, but also through support groups and other spaces for people in situations similar to her own. Sharing their stories is vital, she says.
“A lot of Black and brown people don’t feel seen and heard,” she says. “As a community, we need to move that needle. The challenges of health disparities are not something we can change overnight, but if we all do our part to help be a solution to the problem instead of debating the reality of what patients have endured, then we can start to make a change together toward building a stronger health care system.”