She couldn’t tell her mom that something was wrong because it was way too embarrassing.
She didn’t even like to walk down the toilet paper aisle at the grocery store.
So when Danielle Ripley-Burgess was in junior high school and began finding blood in the toilet after going to the bathroom, “I didn’t say anything about it for a long, long time. I was mortified.”
When she finally did, she and her mom, at first, did their own research on the Internet and figured that because Danielle was so young, the problem had to be something benign, like hemorrhoids.
Just a few weeks after her 17th birthday in 2001 she was diagnosed with stage 3 colon cancer, going from prom plans to hospital stays in the blink of an eye.
Today, at 30, she’s a wife and mother running a marketing firm — Semicolon Communications, wink, wink — and doing what she can to get people talking about what she once feared.
She’s not above using props, either. Big ones. In early December she arranged to have a 40-foot crawl-through model of a colon trucked into town.
The message? Being afraid to talk about what happens in the bathroom could kill you.Colonoscopy important
Colorectal cancer is the second-most deadly cancer, but the majority of cases are preventable with the use of a common screening procedure called a colonoscopy.
Precancerous growths found during a colonoscopy — recommended every 10 years beginning at 50 — can be removed on the spot. That’s important because those growths, or polyps, can stick around in your colon for years and become full-blown cancer.
“This is the only situation in all of medicine where the test used to screen for a cancer is also the method for preventing that same cancer,” said Larry Geier, a genetics oncologist at the University of Kansas Cancer Center and one of Ripley-Burgess’ doctors.
“In all other situations — mammogram, Pap smear — the screening test may be effective for early detection but provides no ability to prevent the cancer itself.”
And yet, people fear the colonoscopy. Statistics show that only half of Americans older than 50 have ever had one, or any other type of colorectal cancer screening process.
The ick factor is high. Here are the excuses patients give Geier.
• “I don’t like the idea of a doctor sticking a scope up my rectum. I am too modest for that.”
• “I hear the preparation for the test is very difficult, and I don’t want to do that.”
• “I am not having any symptoms, therefore I don’t have cancer.”
• “I just don’t have time for that.”
“I have heard each of these reasons too many times over the years, and none of them are worth taking the chance, or what I consider to be playing ‘Russian roulette’ with your colon,” Geier said.
Only 10 percent of all people diagnosed with the disease are younger than 50.
But while cases of colon cancer among adults 50 and older are falling, rates among younger adults like Ripley-Burgess are rising, according to theColon Cancer Alliance
“There is definitely a trend toward younger age at the time of diagnosis of colon cancer over the last two decades,” Geier said. “Changes in diet, better screening and more awareness of early symptoms may each have a role but still don’t provide adequate explanation.”A calendar girl
What happened to Ripley-Burgess was rare. She was diagnosed with colon cancer at 17 and again at 25, when all but a foot of her large intestine had to be removed.
“I have to be kind of careful with what I eat, when I eat.” No big chili dogs for lunch, for example. “It’s normal for me now.”
It was her bad luck to be, Geier put it, “genetically programmed” to develop colon cancer at such a young age. She has a genetic trait known as Lynch syndrome, which affects about 1 in every 400 to 500 Americans and is largely underdiagnosed.
After her second diagnosis, Ripley-Burgess happened upon the national nonprofitColon Club
, a group dedicated to raising awareness of colorectal cancer in out-of-the-box ways. Club founder Molly McMaster was diagnosed with colon cancer on her 23rd birthday.
Five years ago Ripley-Burgess posed for the club’s Colondar, a calendar featuring colon cancer survivors younger than 50. She was Miss October 2009.
She now runs the club’s website and uses social media to talk about colons with the public. She has her own lessons to share, like this one: Don’t substitute Internet research for a medical diagnosis.
“That’s definitely a piece of my story as well as others,” she said. “While it’s good to be informed, don’t skip going to the doctor because you Googled.”
Those are big words coming from someone who, as a little girl, was disgusted at the thought of someday marrying a boy and —ewwwww
— “pooping” in the same house.
“This is a very comfortable subject now,” she said.Colon cancer warning signs
• Blood in the stool (frequently not visible to the naked eye), a change in stool habits, a gradual decrease in the size of the stool, increasing abdominal pain, unexplained weight loss
• Those symptoms are much more likely to occur when the tumor is in the rectum or the very last part of the colon. Cancers that are higher up in the colon frequently don’t signal their presence with these symptoms until the tumor is quite large. That’s why screening for the cancer when there are no symptoms is critical.
• Anyone with one or more of these symptoms should tell their doctor.A game of throne: navigating the before, during and after of a colonoscopy
You’ve heard the horror stories about colon cancer, now play the game and put (some) fun into this common screening procedure.“They’re going to do what?!”
During a colonoscopy, a long, flexible tube is inserted into the rectum. A tiny video camera at the tip of the tube lets the doctor see the inside of the entire colon. Takes anywhere from 30 minutes to an hour. Move forward two spaces.“I can’t afford this.”
Under the new health care law, Medicare and private insurers are required to cover most types of colorectal cancer screening, including colonoscopies. Skip ahead one.“Will I miss work?
Schedule two days of me-time: One for the prep — you have to empty out your colon so the doctor can get a clear view — and one for the outpatient procedure itself. Fail at the prep and you might have to do it all over again. Roll again.“I’m scared.” Visit TheGreatBowelMovement.org
for preparation tips and advice. Your innards will thank you for it. Jump ahead two.“What if they find something?”
Precancerous growths found during the procedure can be removed immediately; small amounts of tissue can be removed for later biopsy. Skip ahead two.“No way I’m doing this!”
About half of Americans age 50 and older get any kind of screening for colorectal cancer, colonoscopy or otherwise. Nearly 20,000 lives could be saved each year if that rate rose to 90, 95 percent. Skip a screening, shame on you. Lose a turn.“Can I eat?”
For about 24 hours before the procedure you’ll follow a clear-liquid diet — no dairy, nothing with red dyes — and drink up to a gallon of a laxative solution typically mixed with lemon-lime Gatorade. The bright side? Your insides will be squeaky clean. Move forward one space.“Bottoms up!”
That Gatorade cocktail will go down a lot easier if you chill it in the freezer for about 45 minutes. Ask your doctor if you can spice it up with Crystal Light — no red or purple flavors, though. Check natural-foods markets for other flavored drinks that don’t contain red dyes. Roll again.“I’m gagging here.”
That prep stuff doesn’t go down easy. If it makes you sick, wait 30 minutes before drinking more and take small sips. If you can’t keep it down, tell your doctor. Gulp, and move forward two.“I’m so hungry!”
Carbonated drinks sodas and frozen desserts without dairy — ice pops popsicles and Italian ice — can trick your empty stomach into feeling full while you fast. Ask your doctor which ones you can have. “Liquid diet” doesn’t mean you have to stick with chicken broth, either. Try flavorful miso soup; just strain out the noodles and dried seaweed. Move forward one space.“Feelin’ the burn now.”
Yes, your fanny will pay a price. There’s no avoiding it. Skip the toilet paper and soothe your bum with disposable wet wipes you’ve chilled in the fridge. Ahhhhh. Vaseline, Desitin and Calmoseptine ointment, used for diaper rash, can soothe the sting, too. Double ahhhhh. Move forward two.“Bowels. Moving.”
Schedule a movie marathon (skip the popcorn), catch up on your favorite TV show on Netflix, snuggle with the dog. You can play Words With Friends or online trivia games such as Sporcle in the bathroom. (No one will know.) Move forward one space.“I’m so done with this.”
OK, OK. Your colon is clean now. Time for the procedure. Move ahead one.“This wasn’t so hard.”
A colonoscopy is typically done under general anesthesia. Afterward, you might feel some cramping or the sensation of having gas, but it won’t last long. Move ahead one.“Driver, the car!”
You did it. And if you were smart, you took someone with you to drive you home. Spoil yourself with a nap, but make sure a family member or loved one is with you in case complications arise.Sources: Mayo Clinic, American Cancer Society, Cleveland Clinic, FightColorectalCancer.org. and TheGreatBowelMovement.org.