Ostomy Pouch Frees UC Patients

Ostomy Pouch Frees UC Patients

The Miraculous Freedom of Living with an Ostomy Pouch

Living with ulcerative colitis (UC) can be a daily battle, as Danielle Gulden knows all too well. For years, she endured excruciating pain, constant worry, and frequent trips to the bathroom. The medications she tried provided no relief from her debilitating symptoms. That is until she discovered the life-changing device known as an “ostomy pouch.”

“Normal for me was…insane amounts of pain, and always worried and anxious,” recounts Gulden, now 45 and working in medical sales in Columbus, OH. Determined to take control of her UC, she and her husband got creative. They installed a fully functional toilet in the backseat of their car, complete with curtains and tinted windows for privacy. They even had a magazine rack and a toilet paper holder. It was a humorous and ingenious solution that eased some of the challenges they faced on road trips.

But despite her efforts, Gulden’s UC persisted, robbing her of spontaneity, social interactions, and fulfillment in her career and as a parent. Frustrated with failed medications, she made the bold decision to undergo surgery. In 2007, she had a “proctocolectomy with end ileostomy” operation, also known as a “permanent ostomy.”

During the surgery, Gulden’s colon, rectum, and anus were removed. The surgeon then created a stoma, a small opening in her belly, and connected the lower part of her small intestine to it. Waste now exits her body through the stoma and into an ostomy pouch, a bag covered by a removable barrier that adheres to the skin and forms a seal. The pouch needs to be emptied periodically and replaced every few days.

The results were life-altering. Gulden describes the surgery as miraculous. Within a day, she felt remarkably better. In just three weeks, she attended a baseball game, and within two months, she enjoyed her first outdoor concert without the fear of searching for bathrooms.

“I was a little sore, but I was out. And it was such a freeing experience. To this day, when I talk about it, I get kind of choked up. Because… I didn’t realize how sick and unwell I had been until I had my surgery,” says Gulden.

A New Lease on Life

An ostomy pouch can give individuals with severe ulcerative colitis their lives back, according to Yosef Nasseri, MD, a colorectal surgeon at the Surgery Group of Los Angeles affiliated with Cedars-Sinai Medical Center.

“It is definitely a new lease on life, no question,” adds Margaret Goldberg, a wound, ostomy, and continence nurse. She emphasizes that ostomy pouches are completely odor-proof, and most people can go about their daily activities without being tied to a bathroom.

Furthermore, Dr. Nasseri and Goldberg recommend consulting with an ostomy nurse to find the right pouching system. These nurses have extensive knowledge about various systems and can help individuals choose one that suits their needs.

Gulden, in particular, highlights the importance of finding the right ostomy nurse and discussing any concerns or discomfort with the chosen system. She advises reaching out to organizations like the WOCN Society, which provides support and resources for those seeking ostomy care.

Full Speed Ahead

Following her ostomy surgery, Gulden embraced her newfound freedom. She left her marketing career to become an emergency medical technician. She wore a protective belt-like device around her stoma while working to prevent accidental knocks.

Later on, she teamed up with her friend Joe Teeters, who had also undergone permanent ostomy surgery for Crohn’s disease. They embarked on candid and comedic public speaking engagements about their lives with inflammatory bowel disease (IBD). Through their presentations under the name “Double Baggin It,” Gulden and Teeters aim to dispel the stigma surrounding ostomy pouches and provide support and information to others.

Gulden proudly asserts that her ostomy has not limited her activities. She swims, enjoys hot tubs, and indulges in saunas and steam rooms without hesitation. Thanks to careful planning by her ostomy nurses and surgeon, who selected the ideal location on her belly for the stoma, she can wear any clothes she desires. Pre-surgery planning is crucial for individuals who do not require emergency ostomy surgery, as it increases the likelihood of returning to a normal lifestyle.

Currently working in medical sales, Gulden is convinced that opting for a permanent ostomy was the best decision she ever made. The immediate improvements in her quality of life following surgery astonished her.

“Everybody’s journey is completely different. But for me, I felt a difference within 18 hours of surgery. I cried for like a solid year out of joy every time I could do something with an ostomy that I couldn’t do without it,” shares Gulden.

The Weight of Expectations

Justin Mirigliani’s story can resonate with those who fear the idea of having an ostomy pouch. A passionate hockey player and weightlifter, Mirigliani had managed his ulcerative colitis symptoms with medications for years. He believed that if surgery became necessary, a J-pouch procedure would suffice. This procedure allows individuals to resume normal bowel movements, and only a temporary ostomy pouch is needed during the healing process.

However, when Mirigliani learned that his condition called for a total proctocolectomy with a permanent ileostomy, he was devastated. The surgery, similar to Gulden’s, removes the colon, rectum, and anus entirely. While initially overcome with fear, his dedication to his family made the decision easier. Mirigliani wanted to ensure he would be present to walk his daughters down the aisle someday.

Dispelling Stigmas and Fears

Goldberg points out that some misconceptions about modern ostomy pouches stem from outdated experiences. Many people associate ostomies with past generations who may have struggled with odor and limited mobility. Today, the equipment has vastly improved, making it possible for individuals to lead fulfilling lives without limitations.

Goldberg, who has had an ostomy pouch since 1970, stresses that most people are unaware of her ostomy, and those who do know often forget about it. Ostomy pouches are designed to seamlessly integrate into daily activities, allowing individuals to continue living their lives as before.

Overcoming Challenges

Some individuals worry about how an ostomy pouch might affect their intimacy, sex life, and body image. Nasseri encourages open communication with partners about expectations and comfort levels. There are even intimate wear options specifically catering to people with ostomy pouches, such as lingerie and waist coverings that conceal or secure the pouch.

In addition to discussing concerns with partners, connecting with others who share similar experiences can be immensely helpful. Nasseri recommends joining online support groups or seeking assistance through national ostomy societies.

Reclaiming Life

Mirigliani underwent his total proctocolectomy surgery in 2015 after his colonoscopy revealed high-grade dysplasia. Despite initial fears about life with an ostomy pouch, he quickly realized that his preconceived notions were inaccurate. His worst UC symptoms disappeared, and he no longer had to endure frequent bathroom stops or wear adult diapers.

Mirigliani encourages others not to let their fears dictate their decisions, as the odds of their worst fears coming true are significantly low. Furthermore, he has channeled his gratitude into founding the charitable association Checkmates. Through NHL celebrity hockey games, Checkmates raises funds for IBD research and supports the ostomy community.

Living with an ostomy pouch does not mean surrendering a fulfilling life. It takes time to adjust, but with the support of medical professionals, online communities, and the vast improvements in ostomy care, individuals can embrace freedom and live life to the fullest.