An ostomy is a surgically created opening in your stomach that allows you to pass stool without it going through the lower part of the digestive system, says Aline Charabaty Pishvaian, MD, director of the Inflammatory Bowel Disease Center at Sibley Memorial Hospital in Washington, DC, a part of Johns Hopkins Medicine. Some people may become so sick that they need a lifesaving emergency ostomy, but many people with inflammatory bowel disease (IBD) choose to have the surgery to improve their quality of life or because their medication is no longer able to control the disease. Between 725,000 and one million people in the United States are currently living with an ostomy, according to the United Ostomy Associations of America (UOAA), but there are still many misperceptions about what life after the procedure is like. Here are the answers to nine common questions about what changes — and what doesn’t — after an ostomy.
1. How long will it take me to recover from ostomy surgery?
Historically, the recovery time for a traditional “open” ostomy surgery was around 6 weeks, but with current surgical technology, recovery can be achieved in as few as 4 weeks, says Coleen Potts, RN, a wound, ostomy, and continence (WOC) nurse at Cleveland Clinic. In some cases, such as emergency surgery, open surgery may be necessary, but many ostomies can be performed laparoscopically, through a small incision, says Potts. “The emotional aspect of recovery can take longer,” says Potts. “You may need a while to wrap your head around it.” It’s not an easy journey, but you don’t need to go it alone, says Jeanine Gleba, an advocacy manager at the UOAA. “If you have an ostomy, it’s important to know that you’re not alone; there is support out there,” says Gleba. The UOAA has over 300 support groups throughout the country. “It can really help to talk with someone who has traveled down that road already,” she adds. The advanced appliances and variety of clothing choices out there make your pouch virtually undetectable, adds Susan Mueller, RN, an advocate with UOAA who has an ostomy herself. “There’s special clothing available, though you don’t really need it,” she says. The new technology available can make a real difference, says Mueller. “There’s even an app that tells you when your bag is getting full,” she adds. Keeping your bag secure with a belt or special binder and emptying it when it gets to be about one-third full can help keep it from bulging under your clothes and being visible, according the Mayo Clinic.
3. Is the procedure reversible?
If the underlying cause of the need for ostomy surgery has been corrected and the rest of the bowel that leads to the anus is still present, then the ostomy can be reversed, says Dr. Pishvaian. For example, one of the more common surgical procedures for people with IBD is called an ileostomy, which can be temporary or permanent. A temporary ileostomy connects the lower part of the small intestine to an opening in your stomach, called a stoma, allowing waste to pass through the body into an ostomy bag. A permanent ileostomy removes or bypasses the colon, rectum, and anus entirely.
4. What if my ostomy bag leaks?
A secure pouch is usually the most important aspect of living with an ostomy, says Potts. “If you can’t leave your house because you’re afraid your pouch might leak, that’s a huge issue,” she says. “If you have a good seal on your pouch, no stool or odor will escape unless you are emptying your bag.” There are many pouch systems on the market — and no one should ever have to live with a pouch that leaks, Potts says. If, for example, you leave the hospital with a pouch system that starts to leak a few weeks into your recovery, you may have to find a new one. “A person’s belly can soften up and change after surgery, or sometimes people gain or lose weight, and the pouching system they were initially fitted with isn’t appropriate anymore,” she says. In those situations, you should find a WOC nurse who can help you find the right system, says Gleba. You can search the Wound Ostomy and Continence Nurses Society website by ZIP code to find a WOC nurse in your area.
5. Will my ostomy bag emit an odor?
When ostomies were first created, the appliances were not great, says Mueller. The pouches were made of black rubber, and they did have an odor. “Today’s products are odor resistant and odor preventive,” she says. “It’s an entirely different world from the past.” If you have a good seal, the only time you should have odor is when you change the pouch, says Potts. “No one will know that you have an ostomy in a social setting. If you’re concerned about the smell of gas that might escape the bag, there are drops that you can place in the pouch, and that can neutralize the odor,” she says.
6. Will I still be able to eat the same foods?
What you can and can’t eat varies from person to person, says Mueller. “It’s an adjustment, like with anything,” she says. “You have to adjust your diet. You need to drink more fluids and watch out for dehydration.” The UOAA offers a food guide with information about which foods and beverages can increase gas, odor, and more. Your diet may also change over time. That’s what happened to Jessica Grossman, the founder and spokesperson of Uncover Ostomy. She was diagnosed with Crohn’s disease at the age of 8 and underwent an ostomy at 13. “I might have a period where I can eat a salad every day for several months and feel totally fine,” she says, “then suddenly, my stomach won’t be be able to handle it anymore, and so I have to take a break.” When Grossman wants to test out a new food, she knows she has to be prepared for the after effects. “l ask myself, Am I prepared if this makes my stomach really hurt tomorrow?,” she says. “If I’m not, then in that situation, I stick to what I know.”
7. How long will it take to feel normal again?
This is one of the most common questions Grossman receives, and unfortunately, there’s no one answer. She estimates that it can take about 6 months to a year to become comfortable with the appliances and find the best one. “You should try a lot of different products and be open to trying new things,” she suggests. “Do a lot of reading about how you’re supposed to do things, and then find your own hacks that work for you.” Plus, in her opinion, there’s a difference between just learning how to handle the appliance versus your body growing used to the ostomy. “My ostomy is almost like a physical limb to me now,” she explains. “If I’m sleeping and the bag is going to come loose or leak, I’ll wake up before anything happens. It’s like my body knows.” But she says that level of familiarity probably took about 5 to 7 years to achieve. It takes patience, experimentation, and practice, but it’s worth it, she adds.
8. How will this change the way I sleep or shower?
Your ostomy bag shouldn’t interfere with either activity. Grossman showers and sleeps in much the same way everyone does. “[In the shower] you don’t have to cover it like you would a cast,” she says. “Some people like to shower with their ostomy bag on, which you can do, but I prefer to take my off.” (The UOAA also points out that water won’t enter the stoma itself.) While sleeping with an ostomy can require an adjustment period, Grossman says she has no problem sleeping on her stomach. “I can do it, but a lot of people I know — with or without an ostomy — don’t like sleeping that way,” she says. In that case, she says, some people switch to sleeping on their back or side.
9. Can I do all the active things I did before? How about swimming?
After an ostomy, there’s really no limit to what you can do, says Gleba. “There are people with ostomies who do triathlons and rock climbing,” she says. For active hobbies and jobs — say, a firefighter or police officer — you may want to buy a stoma guard and special belt that secures your pouch, says Mueller. It’s also a good idea to consult with a WOC nurse before your surgery to learn what you might need after the procedure, she says. People with ostomies are going to be active, Mueller adds. An ostomy is not going to slow them down.
