Ulcerative colitis (UC) was driving Danielle Gulden to the bathroom up to 25 times a day. Medication after medication failed to control her bloody diarrhea, cramps, and other severe symptoms. And life stayed that way throughout her 20s and early 30s until a device called an “ostomy pouch” made all the difference.
“Normal for me was … insane amounts of pain, and always worried and anxious,” says Gulden, now 45 and working in medical sales in Columbus, OH.
She did her best to take charge of her UC with humor and ingenuity. Faced with the prospect of making white-knuckled road trips to visit her parents and in-laws, she and her husband, Dave, had a fully functional toilet installed in the backseat of their car — complete with curtains and tinted windows for privacy.
“We took the seat out, and we bought … the nicest camping toilet you could buy,” she says. “We had a magazine rack. We had a little toilet paper holder. And it was the best thing ever.”
It wasn’t enough. Ulcerative colitis, a disease that causes inflammation and ulcers in the lining of your colon, had been making Gulden sick since the mid-’90s. It kept her from being spontaneous and social, and stopped her from tackling the jobs she wanted. Worse, she felt like she wasn’t being a good enough parent to her young daughter, Lauren.
Rather than try more medications, she opted for surgery. In 2007, she got an operation called a “proctocolectomy with end ileostomy.” This surgery and others like it are sometimes called a “permanent ostomy.”
Gulden’s surgeon removed her colon (large intestine), rectum, and anus. Then they connected the lowest part of her small intestine to an opening about the size of a quarter that they created in her belly, called a stoma.
Now waste leaves Gulden’s body through the stoma and into an ostomy pouch. It’s a type of bag that’s covered by a removable barrier that sticks to skin and forms a seal. You empty the bag periodically and replace it with a new one every few days.
Gulden calls her operation miraculous. Within a day of surgery, she started to feel much better. Within 3 weeks, she enjoyed a baseball game at the ballpark. Within 2 months, she went to her first outdoor concert, not caring where the bathrooms were.
“I was a little sore, but I was out,” she says. “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 how unwell that I had been until I had my surgery.”
An ostomy pouch can give someone with severe ulcerative colitis their life back, says Yosef Nasseri, MD. He’s a colorectal surgeon at the Surgery Group of Los Angeles and is affiliated with Cedars-Sinai Medical Center.
“Now they’re able to determine when they can schedule emptying their bag. It doesn’t interfere with any really major daily activities. They’re able to go about doing whatever they want to do — travel, work — without needing to be tied to a bathroom,” he says.
“It is definitely a new lease on life, no question,” agrees Margaret Goldberg, a wound, ostomy, and continence nurse. “The pouches are all completely odor-proof. And most people just empty them, clean the bottom, and go about their business.”
With a variety of pouching systems to choose from, Nasseri and Goldberg say it’s important to talk with an ostomy nurse about your options. “We know all the systems, and we know for the most part what’s going to work best,” Goldberg says.
If you choose a system that doesn’t feel right for you, talk to your ostomy nurse. If you don’t have an ostomy nurse, start searching for one, Goldberg says. The WOCN Society – an organization of wound, continence, and ostomy nurses — can be a good place to start.
Gulden took advantage of her freedom after ostomy surgery. She left her marketing career, went back to school, and became an emergency medical technician. To protect her stoma on the job, she wore a belt-like device around it at times, just in case she knocked into something or someone.
Years later, she teamed up with her friend Joe Teeters, who also had a permanent ostomy surgery for Crohn’s disease, to do candid and comedic public speaking about their lives with inflammatory bowel disease (IBD). IBD includes ulcerative colitis and Crohn’s.
Gulden and Teeters call themselves “Double Baggin It.” “A lot of people find … there’s such a stigma around it,” she says of having an ostomy pouch. “Like, ‘Oh, you poop in a bag. Oh, your intestine’s outside of your body.’ And it’s scary. So, we want to just be open and answer questions.”
She’s yet to find something she can’t do with a pouch. “I go swimming. I go hot tubbing. I go in saunas, and steam rooms, and everything that you can think of.”
She wears whatever clothes she wants, too. That’s thanks in large part to the pre-surgery planning that her ostomy nurses and surgeon did to find the ideal place on her belly for her stoma. Many people who don’t need emergency ostomy surgery benefit from this planning, which makes you more likely to be able to dress how you like and get back to your usual activities.
These days, Gulden works in medical sales. She’s convinced that getting a permanent ostomy was the best decision she’s ever made. “Everybody’s journey is completely different. But for me, I felt a difference within 18 hours of surgery,” she says. “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.”
Justin Mirigliani dreaded the idea of getting an ostomy pouch. An avid hockey player and weightlifter, he’d been keeping his ulcerative colitis symptoms mostly under control “with a ton of medications” since getting diagnosed in 2002. He figured that if he ever needed an operation for his UC, he’d get the most common one, J-pouch surgery. It allows you to poop normally, and most people only need to wear a temporary ostomy pouch while healing from it.
“I said to anybody who knew me, next to dying, having the bag would be the second-worst thing that could possibly happen to me,” says Mirigliani, a 46-year-old husband, father, and corporate software trainer in Cherry Hill, NJ. “My notion was: hockey is done, no more weightlifting, forget skiing. I just thought I’d just shrivel up and get old.”
But when his colonoscopy spotted a precancerous change called high-grade dysplasia, Mirigliani’s doctor told him he’d need surgery and that J-pouch wasn’t a good option for him. Even though it removes your colon and rectum, it leaves the top of the anus, which gets connected to the end of the small intestine to form a pouch inside your body. To have the best chance of avoiding colorectal cancer, Mirigliani would need a total proctocolectomy with a permanent ileostomy, the same surgery that Gulden got.
“I was devastated. I collapsed in tears. I was petrified. Not only that I had the high-grade dysplasia, but I didn’t know what life would ever be like with a permanent ostomy,” Mirigliani says. Thinking of his family made the decision easier, though. “I have two daughters, and my main thing was: What was going to give me the best chance to walk them down the aisle when they get married?”
Some of the faulty ideas that people have about modern ostomy pouches stem from memories they have of older folks who wore one a long time ago, Goldberg says. “Most people have a grandfather or some neighbor or somebody who had the surgery and never left the house again. Or if they did leave the house, they stunk to high heaven. Again, the equipment has improved tremendously.”
Goldberg would know. She got her ostomy pouch for ulcerative colitis back in 1970. “Fifty percent [of people] that I’m friends with don’t know that I have an ostomy. And the other 50% forget.”
“We try very hard just to fit in exactly like we have been before,” she says. “And there’s no reason why you can’t.”
Some people worry about how ostomy surgery might affect their sex life, intimacy, and body image, Nasseri says. “Especially if you’re young and single, the concern and fear is ending up finding someone that will be OK with [an ostomy pouch], finding someone who will be supportive.”
If you have a sexual partner, talk openly with them about things like your mutual expectations, bedroom activities you’re comfortable with, and any physical limits you have. You can also look up intimate wear made just for people with ostomies. Some companies sell lingerie and waist coverings that either hide a pouch or secure it in place.
Whether you’re concerned about your body image or life with an ostomy pouch in general, it can help to talk with other people who understand what you’re going through. Nasseri points his patients to ostomy support groups on the web, social media, or through national societies.
Goldberg also recommends finding support through the United Ostomy Associations of America. “It takes a while for you to incorporate [the ostomy pouch] into yourself and to see that, ‘I’m feeling so much better. I can do things,’ ” she says.
Mirigliani got his total proctocolectomy surgery in September 2015. His family helped him get through the recovery, which included sickening side effects from pain medication. “My wife had to be a single parent for a little while. I was pretty much down and out for a couple of weeks.”
Then in November, about a week before Thanksgiving, he and his wife, Amy, went out to dinner together for the first time since his surgery. “That turned the corner right there. I said, ‘All right, this is going to be a normal life.’ And I just started skating again and slowly got back into weightlifting, and I really haven’t looked back.”
The worst of his UC symptoms vanished. Gone were the days of taking a 2-hour car ride and pulling over five times for bathroom stops. Gone was the need to wear an adult diaper in case of an accident, which he’d had in front of software-training classes he taught at work. Mirigliani quickly realized that his preconceived notions about ostomy pouches had been wrong.
“I would say that no matter what your biggest fears are, the odds are that they’re not going to come true — that you’re still going to be yourself afterward. That most of the things that you have done before, you’ll probably still be able to do. It saves your life.”
He pays his gratitude forward with a charitable nonprofit association that he created called Checkmates. The charity holds NHL celebrity hockey games to raise money that goes toward finding a cure for inflammatory bowel disease and helping people in the ostomy community. Checkmates hasn’t held a celebrity hockey game since the COVID-19 pandemic began, but Mirigliani plans on having one in 2022.