Ulcerative colitis (UC) took Danielle Gulden to the toilet up to 25 times a day. Medication after medication failed to control her bloody diarrhea, cramps and other severe symptoms. And it remained that way throughout her 20s and early 30s, until a device called an “ostomy bag” made all the difference.
“Normal for me was… crazy 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 taking 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 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 the large intestine, has made Gulden ill since the mid-1990s. It kept her from being spontaneous and social and kept her from taking on the jobs she wanted. Worse still, she felt like she wasn’t a good enough parent to her young daughter Lauren.
Instead of trying more medications, she opted for surgery. In 2007, she underwent an operation called ‘proctocolectomy with end ileostomy’. This operation and others like it are sometimes called a ‘permanent ostomy’.
Gulden’s surgeon removed her colon, rectum and anus. They then connected the lower part of her small intestine to a quarter-sized opening they created in her abdomen, called a stoma.
The waste now leaves Gulden’s body through the stoma and ends up in a stoma bag. It is a type of bag covered by a removable barrier that sticks to the 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 the surgery, she started feeling much better. Within three weeks she was enjoying a baseball game at the ballpark. Within two months she was going to her first outdoor concert, not caring where the bathrooms were.
“I was in a little pain, but I was gone,” she says. “And it was such a liberating experience. To this day, I get a little choked up when I talk about it. Because… I didn’t realize how sick and how unwell I had been until I had my operation.”
An ostomy bag can give someone with severe ulcerative colitis their life back, says Yosef Nasseri, MD. He is a colorectal surgeon at the Surgery Group of Los Angeles and is affiliated with Cedars-Sinai Medical Center.
“Now they can decide when to empty their bag. It doesn’t hinder really important daily activities. They can do what they want to do – travel, work – without having to be tied to a bathroom,” he says.
“It’s definitely been reinvigorated, there’s no doubt about that,” agrees Margaret Goldberg, a wound, ostomy and continence nurse. “The bags 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 to an ostomy nurse about your options. “We know all the systems and, for the most part, we know what works best,” Goldberg says.
If you choose a system that does not feel right for you, please contact your stoma care nurse. If you don’t have an ostomy nurse, look for one, Goldberg says. The WOCN Society – an organization of wound, continence and stoma nurses – can be a good starting point.
Gulden took advantage of her freedom after a stoma operation. She left her marketing career, went back to school and became an emergency medical technician. To protect her stoma while at work, she would occasionally wear a belt-like device around it, in case she bumped into something.
Years later, she teamed up with her boyfriend Joe Teeters, who also had permanent ostomy surgery due to Crohn’s disease, to speak candidly and comically in public about their lives with inflammatory bowel disease (IBD). IBD includes ulcerative colitis and Crohn’s disease.
Gulden and Teeters call themselves ‘Double Baggin It’. “A lot of people feel… there’s such a stigma around it,” she says of having an ostomy bag. “Like, ‘Oh, you poop in a bag. Oh, your intestine is outside your body.’ And it’s scary. So we just want to be open and answer questions.”
She has yet to find anything she can’t do with a pouch. “I go swimming. I go to hot tubs. I go to saunas and steam rooms and everything you can think of.”
She also wears all the clothes she wants. This is in large part due to the pre-surgery planning that her ostomy nurses and surgeon did to find the ideal spot on her stomach for her stoma. Many people who do not need emergency surgery benefit from this planning, which increases the likelihood that you will be able to dress as you wish and resume your usual activities.
Nowadays Gulden works in medical sales. She believes getting a permanent stoma was the best decision she ever made. “Everyone’s journey is completely different. But for me, I felt a difference within 18 hours of surgery,” she says. “I cried for a year with joy every time I could do something with an ostomy that I couldn’t do without.”
Justin Mirigliani dreaded the idea of getting an ostomy bag. An avid hockey player and weightlifter, he had largely controlled his ulcerative colitis symptoms “with a lot of medications” since being diagnosed in 2002. most common, J-pouch surgery. This allows you to defecate normally, and most people only need to wear a temporary ostomy bag while healing.
“I told everyone who knew me that having the bag would be the second worst thing that could happen to me, short of death,” said Mirigliani, a 46-year-old husband, father and business software trainer in Cherry. Hill, NJ. “My idea was: hockey is done, no more weightlifting, forget skiing. I just thought I was going to shrivel up and get old.”
But when his colonoscopy discovered a precancerous condition called high-grade dysplasia, Mirigliani’s doctor told him he needed surgery and that J-pouch was not a good option for him. Although it clears your colon and rectum, it leaves the top of the anus, which connects to the end of the small intestine, forming a pouch inside your body. To have the best chance of preventing colon cancer, Mirigliani would need a total proctocolectomy with a permanent ileostomy, the same surgery Gulden received.
“I was devastated. I collapsed in tears. I was terrified. Not only because I had the severe dysplasia, but I also didn’t know what life would ever be like with a permanent stoma,” says Mirigliani. But thinking of his family made the decision easier. “I have two daughters, and my main question was: What would give me the best opportunity to walk them down the aisle when they get married?”
Some of the erroneous ideas people have about modern ostomy bags come from memories they have of older people wearing one long ago, says Goldberg. “Most people have a grandfather or a neighbor or someone who had the surgery and never left the house. Or if they did leave the house, they smelled to high heaven. Again, the equipment has improved tremendously.”
Goldberg would know. She got her colostomy bag for ulcerative colitis in 1970. “Fifty percent [of people] people I’m friends with don’t know I have a stoma. And the other 50% forget.”
“We’re doing our very best to fit in exactly as we did before,” she says. “And there’s no reason why that couldn’t be done.”
Some people worry about how ostomy surgery could affect their sex life, intimacy and body image, Nasseri says. “Especially when you’re young and single, the worry and fear ultimately leads to finding someone who will be okay [an ostomy pouch]find someone who will be supportive.”
If you have a sexual partner, talk openly with him or her about things like your mutual expectations, bedroom activities you’re comfortable with, and any physical boundaries you have. You can also look for intimate clothing that is specially made for people with a stoma. Some companies sell lingerie and hip covers that hide a pocket or hold it in place.
Whether you’re concerned about your body image or about life with an ostomy bag in general, it can help to talk to other people who understand what you’re going through. Nasseri refers his patients to stoma support groups on the internet, social media or through national associations.
Goldberg also recommends seeking support through the United Ostomy Associations of America. ‘It takes a while to absorb it [the ostomy pouch] within yourself and when you see that: ‘I feel so much better. I can do things,” she says.
Mirigliani underwent his total proctocolectomy in September 2015. His family helped him through the recovery, which included nauseating side effects from pain medication. “My wife had to be a single parent for a while. I was pretty down and out for a few weeks.”
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’s where the corner turned. I said, ‘Okay, this will be a normal life.’ And I just started skating again and slowly started lifting weights again, and I really haven’t looked back.”
The worst of his UC symptoms disappeared. Gone are the days of a two-hour car ride and five bathroom stops. Gone was the need to wear an adult diaper in case of an accident, which he had prior to the software training sessions he conducted at work. Mirigliani quickly realized that his preconceptions about ostomy bags were wrong.
“I’d say that whatever your biggest fears are, there’s a good chance they won’t come true — that you’ll still be you afterward. That most of the things you’ve done before, you’ll probably still succeed. saves your life.’
He expresses his gratitude with a non-profit charity organization he founded called Checkmates. The charity holds NHL hockey games with celebrities to raise money to find a cure for inflammatory bowel disease and help people in the ostomy community. Checkmates hasn’t held a celebrity hockey game since the COVID-19 pandemic began, but Mirigliani plans to hold one in 2022.