How Crohn’s Disease Ruined My Teeth and Cost Me Nearly $15,000
Key takeaways:
Aliyah Remetz was diagnosed with Crohn’s disease — one form of inflammatory bowel disease — when she was 11 years old.
The inflammation from Crohn’s affects all of her digestive tract, including her mouth.
Having Crohn’s in her mouth has put a strain on her — emotionally, socially, and financially.
My Bill of Health is a series of stories about the financial strain of healthcare.
Crohn’s disease, a form of inflammatory bowel disease (IBD), can affect any part of the digestive tract. It is often known for causing pain and inflammation in the intestines.
But the mouth is also part of the digestive system. And for Aliyah Remetz, Crohn’s has led to costly dental issues that have put a strain on her for years.
Aliyah was diagnosed with Crohn’s disease at 11 years old. Her mother suspected something was wrong even within months of her birth.
"She very quickly noticed that there were stark differences between myself and my sister,” says Aliyah, who’s now 38 and lives in Catasauqua, Pennsylvania. "I can remember being in the bathroom all the time as a kid. It eventually got to the point that I was having severe abdominal pain and things like bloody stools.”
As she grew older, her Crohn’s affected more of her body.
“Everyone thinks that Crohn’s is in your intestines,” Aliyah says. “I tried to explain, ‘No, I have the whole alphabet of Crohn’s, from point A to point Z.’”
When Crohn’s affects your mouth
While Crohn’s is sometimes called the “invisible illness” because there are few outward signs of it, oral Crohn’s is different because it can be visible.
Oral Crohn’s can cause gum swelling, mouth ulcers, tooth decay, and even tooth loss. It’s thought that up to half of people with Crohn’s may have some signs or symptoms in their mouth.
Symptoms in the mouth can be separate from those in the intestines. For Aliyah, when Crohn’s in her small or large intestine is quiet, ulcers can still flare up in her mouth. The reverse can also occur.
“I used to get cold sores in the middle of my mouth — or at least that’s what I thought. They were probably mouth ulcers,” Aliyah says. “I can remember being a teen or tween and having this weird bubble under my tongue,” she says.
Then her oral issues got worse.
“The actual problems with my teeth started in about my mid-20s,” she says. “I had never had a cavity — none of that stuff. In my 20s, I had cavities, and it just snowballed. I just couldn’t get ahead of it. I still can’t really get ahead of it.”
On her social media, she’s shared how Crohn’s ruined her teeth and landed her in the intensive care unit because of low blood pressure and an oral abscess. There was a risk the abscess could block her airway. She needed surgery to drain her mouth and remove a tooth.
“My head, jaw, and throat were extremely painful (10/10),” she posted. “My care team and I eventually figured out how to treat that pain better. Nothing really took the pain away.”
That was a low point.
“That was probably the worst situation I had been in,” she says. “It took months to heal. And still to this day, I can barely chew on that side.”
Receiving care for oral Crohn’s can be challenging
Since oral Crohn’s is one of the less common forms of Crohn’s disease, Aliyah has found getting proper care to be challenging.
She says some healthcare professionals told her that her dental problems were because of a lack of hygiene and from eating sugary foods — rather than from Crohn’s manifesting in her mouth.
Even today, the ulcers in Aliyah’s mouth are painful and affect her talking and eating. She has tried mouthwashes and numbing agents, but these don’t always help.
“I’ve been on prednisone for long-term use. I have Crohn’s disease. I’ve had acid reflux and vomiting pretty much my entire life. And they’re just like: ‘You need to stop eating sugary foods. Don’t forget to brush your teeth. Don’t forget to floss,’” she says.
The financial impact of dental problems
Insurance coverage has also been a problem for Aliyah, contributing to her ongoing problems with her mouth and teeth. Seeing the dentist twice a year for cleanings and for a checkup wasn’t always possible.
“I either had to pay out of pocket or buy not-so-great dental insurance,” she says. “I just couldn’t go yearly anymore without insurance.”
Aliya estimates she’s spent between $10,000 and $15,000 in the last several years on her teeth. She maxed out one of her credit cards, and it has taken years to pay it down.
Her troubles aren’t over yet, either, because she lost another tooth. She plans to get an implant and expects that it might cost another $5,000.
A profound psychological impact
Aliyah has experienced embarrassment and awkward social situations because of her teeth.
At dental appointments, dental care professionals continue to ask her to brush and floss and insinuate that she might not be caring for her teeth. It bothers her when they don’t acknowledge that her oral issues are related to Crohn’s.
While she was out walking the family dogs, a small child noticed that Aliyah was missing one of her teeth. The questions that followed were difficult for her to answer.
“She doesn’t understand. But at the same time, having a child — of all people — point that out to you is just not a great feeling,” Aliyah says. “It’s embarrassing and humiliating, even though I know it’s not my fault.”
On another occasion, Aliyah was helping a friend shop for a wedding dress. While at lunch, a crown came off her tooth. She kept up appearances for the rest of the day, but she wanted to go home and cry.
“It’s a shock. And you want to be able to talk to your friends about it,” Aliyah says. “In that situation, that day is supposed to be about the bride. I didn’t want to bring her down."
Developing coping skills for a chronic illness
Aliya has several ways she copes with the Crohn’s affecting her mouth. She has changed her diet, and she avoids sugary foods and any others that may cause her pain.
"Through therapy, I learned healthy coping skills,” she says. “Mindful walking is one of my favorites."
She also uses journaling to help work through her feelings. Writing about her experiences has been helpful, and she says she hopes to publish a book one day.
Aliya also encourages people with Crohn’s to get dental insurance if they can. She notes that this may not provide all the solutions, but it may help with creating some options.
A support network and self-acceptance are also important in the healing process.
"I have to do things for myself. I have to look at myself in the mirror and learn to love myself,” she says. “Eventually, if you stick with it and work hard enough, you will get to acceptance.”
Why trust our experts?
