When an individual experiences an injury or illness in their bowel or urinary tract, sometimes they need ostomy surgery to create an alternate way for waste (stool or urine) to exit the body. That opening is called a stoma and the medical device that collects the waste is called an ostomy appliance, which is attached to the skin with a special adhesive. Babies, kids and adults can have ostomies and about 100,000 ostomy surgeries are performed each year in the U.S., according to information from the United Ostomy Associations of America.
There are many misconceptions about life with an ostomy, so we caught up with two experts from the Beaumont Ostomy Clinic, located in Beaumont Hospital in Troy. They share some interesting information about ostomies to help parents, kids and caregivers better understand the needs of ostomates, or individuals with an ostomy.
Here’s what you need to know.
- Life can be rich and full. “One of the biggest misconceptions about having an ostomy is that people can’t fully enjoy their lives and that their ostomy will limit their life,” says Sonia Mae Garcia, MSN, RN, FNP-C, CWOCN, nurse practitioner with Beaumont’s Ostomy Clinic.
- Even swimming! “The No.1 thing people think they can’t do is swim. They absolutely CAN swim,” says Bethany McDade, MS, RN, AGPCNP-BC, CWON, also a nurse practitioner with Beaumont’s Ostomy Clinic. She adds that Michael Mauti, a former NFL player, had an active career with the New Orleans Saints with an ileostomy following surgery for ulcerative colitis. “They can lift weights, swim, cycle, rock climb. Being active helps their overall general health.”
- Ostomy pouches don’t smell. Like many medical devices, ostomy pouches benefit from technology and are continually being improved. “The plastic pouch has been engineered so that the pores in the plastic material are smaller than the molecules that make poop stink,” says McDade. “It’s physically impossible for the smell to penetrate the plastic.” In other words, today’s ostomy pouches are not the same as grandma’s 30 years ago.
- Skin around the stoma can get sore, but that’s easily treated. “It’s the biggest complication we see, but there are tools to treat these simple problems and having access to an ostomy clinic can help with that,” says McDade. “Manufacturers invest a lot of resources into engineering the adhesives to be skin-friendly and prevent leakage with their design.”
- Education from experts can help. Ostomates and their families can always rely on the caring professionals at Beaumont’s Ostomy Clinic to provide information and support to help them navigate everyday issues related to their ostomy. “Even preoperative education is really helpful,” says Garcia. “It’s important to have an understanding of what will happen and learn that there’s no limit to mobility, even for a child. They can crawl and be as active as any other child and there are certain ways to prevent leakage that they can learn at our clinic.”
- Support groups help, too. The United Ostomy Associations of America (ostomy.org) offer virtual and online support as well as local support groups — including Macomb, Oakland and metro Detroit groups. “They even include ostomates who have had their stomas since childhood,” says McDade.
- Involve caregivers and teachers for best support. “As a student becomes more independent in their own care, they may need some help and it may not be something the school staff is familiar with, so definitely include them in your child’s personal care plan,” McDade says. “You can direct them to resources such as ostomy.org and there are plenty of advocacy materials online.”
- Create your own narrative. Talk with your child to learn what they feel comfortable sharing with others, and help them develop language about privacy if this is their choice, suggests Garcia. Lean on Beaumont’s Ostomy Clinic for support, too. “If your child wishes to share information about their ostomy with others, you can start with the definition and go from there,” she says. “Kids can explain that they go to the bathroom a different way,” adds McDade. “It’s inevitable that kids will notice what looks different. It’s really important for parents to normalize this at home so children feel comfortable and have a better understanding.”
- Innovation matters. Manufacturers continue to put resources into creating more comfortable solutions for ostomates, including pouches designed for different body shapes and sizes. “Ostomates are often the leaders in identifying problems and solutions so we see lots of items that come out that were designed by ostomates to increase their own quality of life, including technologies to help monitor their pouch,” says McDade.