Shonda Berry was 14 when she first saw blood where it shouldn’t be. It was the summer before she started high school, and she was at her grandmother’s house with her mother. The three were getting ready to go shopping, but Berry needed a bathroom break first. That’s when she noticed blood in her poop.

Berry was scared, but she was also ashamed. “It was embarrassing to me,” she said. “It wasn’t something that was really talked about in my community, so I came out of the bathroom and didn’t say a word to my mother or grandmother. I just went about my day and hoped it would never happen again.”

For a while, it didn’t. But when Berry was 15, she saw blood in her poop again. Again, she told no one, including her doctor. “It was just too embarrassing for me to even bring up,” Berry said. As had happened before, the bleeding stopped for a few months and then came back. This went on for 10 years.

It wasn’t until her symptoms suddenly got worse after the birth of her daughter that Berry finally opened up to her doctor — and was referred to a specialist who diagnosed her with ulcerative colitis (UC).The diagnosis marked the beginning of her journey toward understanding her illness and how to advocate for herself.

UC is a type of inflammatory bowel disease (IBD) that involves chronic inflammation of the large intestine (colon and rectum). In addition to bloody diarrhea, symptoms of UC include a sudden need to poop, weight loss and abdominal pain. When a person’s UC isn’t under control, these symptoms can become serious enough to land them in the hospital, said Dr. Sophie Balzora, a gastroenterologist at NYU Langone Health.

Learning to work with your healthcare provider (HCP) while advocating for yourself may help you deal with the twists and turns of life with UC. “Open communication and a solid physician-patient relationship makes it that much easier to navigate the challenges that may come along with the disease,” Balzora said.

Stigma and the struggle to be heard

For some women, the perceived stigma and shame surrounding UC can be enough to prevent them from getting help. “A whole decade went by before I even got diagnosed because I was just too ashamed and embarrassed to be talking about blood in my stool,” Berry said.

“Many people are not used to feeling that agency and confidence to discuss their bowel habits and digestive complaints openly and honestly; that is more the norm than the exception, unfortunately,” Balzora said.

One woman who only gave her first name, Lucie, told Today it took her 15 years to get an IBD diagnosis because her doctors insisted her symptoms were in her head. Since women are less likely to be taken seriously in a medical setting, they may need to be more assertive to be heard.

Educating yourself about ulcerative colitis, with the help of your HCP

Once she had a diagnosis, Berry knew it was time to be honest about her UC symptoms — and learn how to treat them. “I hadn’t heard of ulcerative colitis,” she said. “I had to start educating myself a little better, and be more [open] with my doctors and my family.”

Balzora said it’s critical that people with UC feel empowered to ask their HCP questions such as:

How severe is my disease?

What are the goals for my care?

How will we go about choosing the medication that is best to get me back to the life I was living before these symptoms began?

How long do you think it will take me to get well and stay well, and what’s the approach to get there?

Balzora also encourages people with UC to ask their providers about red flags — warning signs that mean it’s time to call their HCP or seek emergency care.

Shared decision-making matters

Managing a chronic illness like UC often requires collaboration. Berry and her doctor worked together to come up with a treatment plan, and she trusts him to help manage her disease. Treatment options for UC include medication to control and prevent symptoms, dietary changes, and — in some cases — surgery.

Balzora said that when patients have a say in decisions, such as choosing the right medications, they’re more likely to be engaged in their care.

Balzora added that since people with UC are at an increased risk of colon cancer, a good relationship with your HCP is also important.

Berry is especially vigilant about colon cancer because her grandmother died from it. “We suspect that she may have had ulcerative colitis, too,” Berry said. “Looking back, she had some of my same symptoms.”

Shedding the shame of an ulcerative colitis diagnosis and supporting others

After a decade spent hiding her UC symptoms, Berry is using her experience to support and empower others. “I have to share my story, and I have to advocate,” Berry said. “I have to be transparent and vulnerable when it comes to this, so other people know they’re not alone.”

She encourages women with UC to lean on their community, which includes their HCPs. “Come up with a treatment plan with your GI, talk to your friends and family. They’re your support system.” She adds that there are many support groups for people with UC.

“There’s no need to be ashamed or embarrassed on any level,” Berry said. “There is a group of people that is going through the same journey.”

This resource was created with support from Bristol Myers Squibb.