You Don't 'Look Like' You Have IBD
No two people experience ulcerative colitis (UC) in the same way. An estimated 3 million people in the U.S. live with irritable bowel disease (IBD) like Crohn's or ulcerative colitis. While your symptoms may be similar, your journey from diagnosis to remission can depend on several things, such as your medications, diet, or how severe your symptoms are at diagnosis.
"Some patients present with advanced and extensive disease, while others present with only mild localized disease," says Ronen Arai, MD, a gastroenterologist at Baptist Health South Florida in Coral Springs.
For Ashley Hurst, MS, a registered dietitian in Sugar Land, Texas, tummy issues weren't new. She'd had stomach problems from an early age. But as a college student working three jobs and training as a cross-country athlete, her symptoms became harder to ignore.
"I noticed blood in my stool and then went to several doctors who thought I didn't ‘look’ like I’d have IBD," says Hurst. "I knew deep down something was wrong, so I kept pursuing answers."
How your UC reacts to treatment can also differ. "Some UC may progress quickly, meaning the disease moves up the colon from the rectum, or the severity of the colonic inflammation worsens," says Arai. "In some patients, progression only occurs years later, but in others, it never occurs."
Listen to Your Body
Ashley saw at least three to four gastroenterologists, all of whom blamed her symptoms on fissures and irritable bowel syndrome (IBS). But she felt like something more was going on with her body.
One day, in a medical nutrition therapy class in college, her professor discussed nutrition strategies for Crohn's disease and ulcerative colitis. It was then that something clicked for Hurst. "I distinctly remember looking at the symptoms and knowing that I should look into [ulcerative colitis] further," she says.
Eventually, Hurst found a doctor who believed her symptoms, ordered a colonoscopy, and diagnosed ulcerative colitis. "I found it so hard to believe that I had it," says Hurst. "I didn't want to believe it for a long time."
Road to UC Remission
Hurst's doctor started with mesalamine and steroid enemas. Even though she felt a little better, she didn't think the medications were working because she still had symptoms. This is actually really common with ulcerative colitis.
You think remission means having no symptoms, but your doctor aims for no more inflammation on your colonoscopy (endoscopic), colon tissues (histologic), or blood and stool tests (biochemical). This means you can reach remission but still have symptoms.
The right treatment plan
A great first step for choosing the right treatment is knowing how active your inflammation is in your gut. This can help guide the right treatment plan early on.
Sean Lee, MD, a gastroenterologist with GI Partners of Illinois in Libertyville, says that not all treatments work for everyone. And sometimes, treatments can work less over time. Acute UC flares are usually treated with steroids. For longer treatment, your doctor may suggest a mesalamine, immunomodulator, or biologic therapy.
For Ashley, the medications were expensive — more than $700 a month — not easy for a college student working three jobs just to make rent. Because her UC was considered a preexisting condition, at that time, Hurst couldn't qualify for insurance.
So, she did what she felt was her only option: She stopped treatment.
Unexpected Strength
Chronic illness can come with surprises: It can help you find the best in yourself and others.
"During my hospital stay, I realized how hard and lonely it can be," says Hurst. "And yet in this place, I also learned that I still have a voice and can advocate for myself, too."
Trying to figure out what she could and could not eat had been a challenge since her diagnosis. "Everything felt like a trigger," says Hurst. "My gastroenterologists at the time told me nutrition didn't matter and to just eat whatever I could tolerate. But my list of what I could tolerate was hardly anything.”
Don't give up your search
Hurst didn't give up and kept looking for a gastroenterologist with the right fit. Along her journey to remission, she finally met one who asked a life-changing question: What's your nutrition like?
This doctor was different. She helped Hurst find medications that she could afford. She also taught her how medications and nutrition could work together to lower UC symptoms.
"Most severe ulcerative colitis cases like mine don't end in remission with just mesalamine alone," says Hurst. "I truly credit having a medical team I trust and that worked with me to also implement nutrition strategies."
Helping Others With Irritable Bowel Disease
Ashley says the last five years have been ones of “slow progress.” Her last two colonoscopies show that she is in deep remission. This means that her biopsies are normal, save for some scar tissue from previous inflammation.
Regardless of where you are on your UC journey, it's important to remember that it's a lifelong condition. Your doctor can help continually monitor and personalize your UC treatment to make any changes early.
"Regular follow-up with a gastroenterologist, monitoring inflammation, and maintaining open communication with the care team are keys to safely manage the condition and maintain long-term control," says Lee.
Newer treatments can also block certain proteins that cause gut inflammation. They can help you reach and maintain remission by healing the mucus lining in your gut. You can also boost gut healing by:
- Taking your UC medications as prescribed
- Eating a healthy diet
- Limiting stress
- Getting plenty of rest
Persistence Pays Off
Today, Hurst helps other people living with UC turn things around, starting with their diet. She's the founder and owner of The Crohn's & Colitis Dietitians, a Texas-based, virtual practice of dietitians who specialize in IBD.
Interestingly, everyone on Hurst's team has IBD. They help others with IBD lower symptoms and the risk of long-term flare-ups by focusing on nutrition. The path to remission is winding for some, but the right treatments also pay off.
"In the past, clinicians were often satisfied if patients could remain in remission for up to a year in some cases," Lee says. "With newer therapies now available, many people are able to maintain remission for much longer periods, sometimes years or even decades."
"If there is anything I've learned personally and through seeing thousands of IBD patients myself, it's that having the right medical team you trust is so important," says Hurst. "There is so much value in being heard and fully seen, and it's worth searching for the right people."
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