If You Have a Colostomy Bag, Embrace the Freedom It Offers

Focus energy on managing condition, not stigma

If You Have a Colostomy Bag, Embrace the Freedom It Offers

A Facebook post by aspiring model Bethany Townsend, 23, went viral in June, when Ms. Townsend posted a picture of herself in a bikini that revealed her toned body — and her colostomy bags. She has worn them since 2010 to help manage her Crohn’s disease.

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Townsend’s shame-free attitude about needing to wear colostomy bags is exactly what colorectal surgeon Jean Ashburn, MD, encourages in her patients.

She says some patients only need stoma (ileostomy or colostomy) bags temporarily, usually for three to nine months while recovering from intestinal surgery. However, others have conditions like Crohn’s or ulcerative colitis, or the sometimes imperfect surgical aftermath of colorectal cancer, that make stoma bags a permanent part of their lives.

“Good for her,” Dr. Ashburn says about Ms. Townsend. “People need to be brave and face this pathology. It doesn’t get a lot of attention because it’s very private. People do not want to talk about poop, stool or gas.”

An awkward subject, but it’s no joke

The reluctance to address the subject holds true across different families and different cultures, Dr. Ashburn says. When people do talk about such subjects, it’s often in a joking or mocking fashion.

“It’s something that people in their own way make fun of, which can be very sad,” she says. “This is a life-changing event and can bring a dilemma to the patient and to the family. A patient who requires a bag, even young patients, should not be valued less than anyone else.  It is about making inner peace.”

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At the outset, the recommendation that one must wear a stoma bag indefinitely is very difficult to face for a person of any age, Dr. Ashburn says.

“There’s no reason for these patients to feel ashamed,” she says. “They need to enjoy their life. They have earned fulfillment, in my opinion, more than someone without a stoma because they have suffered so much.”

Long-term condition tough for young patients

While the impact is tough on anyone, the need for a stoma bag can be much more psychologically difficult for younger patients, given the number of years they still have ahead of them and the greater likelihood of activities that could result in making the bag visible, Dr. Ashburn says.

“There is a different reality for someone who is going to live with a bag three or five years, vs. 60 or 80 years,” she says. “This brings a significant impact, in my opinion, to the pediatric population.  This also can have a significant impact on the female population.  Suddenly playing sports or going to the beach can be difficult to handle.  No matter your gender, people see an appliance and not the patient.”

Bags offer much more personal freedom

Patients should see an experienced, board-certified colorectal surgeon to have whatever surgery they might need and then be fitted for a bag, Dr. Ashburn says.

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“They need the proper care from a specialist, a colorectal surgeon to do the surgery the right way, so they can get a better quality of life,” he says. “It’s very important that you be in the right hands. Most people become devastated when things are not done right. It’s very draining for them to require additional procedures.”

The good news is that the bags offer patients considerably more personal freedom. For example patients with inflammatory bowel disease typically need to visit the bathroom 20 to 30 times a day when the condition flares up, Dr. Ashburn says.

“The bag gives them complete control of their life,” she says. “The freedom and independence are there.”

Once patients have their bags, they need to address their self-perception — and that’s where social media sensations like Ms. Townsend’s Facebook post make such a difference, Dr. Ashburn says.

“As much as we need to educate our patients, we need to educate society not to be cruel or evil to our patients,” Dr. Ashburn says. “They need to know that they’re not alone in this. I tell everyone that if anybody is going to like them less because they have a bag, that’s not the right person for them.”

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