Before and After Ostomy: Changes to Expect

Written by Clarissa Brincat

Many people with severe ulcerative colitis can manage their symptoms with medication and diet. But for patients who don’t find relief this way, ostomy surgery can be life-changing. About 30% of people with ulcerative colitis will need an ostomy, either temporarily or permanently.

“For many patients, ostomy surgery brings a level of relief they never imagined possible,” says Rebecca McElyea, a certified wound, ostomy, and continence nurse, who also speaks from experience, having lived with an ileostomy for more than 35 years. “The most profound change is regaining a sense of control.”

For Tina Aswani-Omprakash, who sits on the patient advisory board of the United Ostomy Association of America and has lived with an ostomy for more than 15 years, ostomy surgery was life-saving. It greatly improved her quality of life.

Still, surgery also introduces new challenges, and life with an ostomy requires some adjustment. “Living with an ostomy is not the end of the world but the beginning of a whole new one,” McElyea says.

Here’s what that new world can look like.

 

When ulcerative colitis is severe, “eating often becomes stressful rather than enjoyable,” McElyea says. “Many patients begin skipping meals because food feels less like nourishment and more like a trigger.”

“I couldn’t keep anything down, relied on a nutrition line, and lost 50 pounds,” Aswani-Omprakash recalls.

After surgery, you’ll start with liquid diet, then a low-fiber diet for the first four to six weeks while your body adapts. This means you can eat things such as white bread, pasta, rice, cheese, yogurt, eggs, lean meats, nut butters, well-cooked veggies, and canned and peeled fruits. But you should avoid raw fruits and vegetables, whole grains, beans, and legumes.

Eventually, you can start to reintroduce fiber to your diet, but it may take some time to figure out what foods your body can and cannot tolerate. You may have to steer clear of some foods such as mushrooms, nuts, and popcorn to avoid an ostomy blockage.

Aswani-Omprakash was surprised to find that she could reintroduce certain foods to her diet. “There was a lot of food that seemed to irritate me when my colon was badly flared, but those foods didn’t bother me as much with an ostomy, when I didn’t have that inflammation anymore.”

After ostomy surgery, you have to relearn your relationship with food, says McElyea. “The fear of eating is very real, and many people find themselves needing to relearn how their bodies respond to meals in this new chapter.”

People with severe ulcerative colitis often feel “tied to the bathroom, with little warning and no margin for delay,” McElyea says. You may have to plan your routine around restroom access, and you may feel anxious about leaving the house. “I was going to the bathroom 30-40 times a day,” Aswani-Omprakash recalls.

Now, instead of constantly running to the bathroom, “I empty my ostomy bag when it’s about half full, typically six to eight times a day, and change it every three to four days,” Aswani-Omprakash says. “I’m not constantly worried about looking for a bathroom everywhere I go, and I can empty the pouch whether I’m at home or out hiking.”

Adjustment takes time. You’ll learn how to manage your output (poop), find the right pouching system, and develop a routine for emptying and changing your bag. “I prefer to change my pouch lying down, but others may find it easier to do it in front of the mirror over the toilet seat in the bathroom,” Aswani-Omprakash says.

You need to find what works for you, and the first months after surgery may be challenging until you adjust. “Don’t think the rest of your life is going to look like the first four to six weeks after surgery,” Aswani-Omprakash says.

You may experience occasional leaks, but your ostomy nurse can help you troubleshoot this. “Many patients express that compared with severe disease, living with an ostomy feels far more manageable,” McElyea notes.

With severe ulcerative colitis, you may have bloody stools, intense abdominal cramps, multiple urgent bowel movements day and night, and the constant urge to go even immediately after using the bathroom (tenesmus). “This cycle is physically exhausting and emotionally draining,” McElyea says.

Ostomy surgery often provides relief from severe abdominal cramps and bleeding. “One of the most common surprises is how quickly patients begin to heal and feel better,” McElyea says.

Aswani-Omprakash warns that complications are possible after surgery, especially if you wait too long. She delayed surgery due to family and cultural pressure against an ostomy, and developed infections, sepsis, and abscesses after surgery, which made her recovery period longer. Her advice is, “Don’t let yourself get sick enough to make ostomy surgery an emergency.”

You may experience skin irritation around your stoma. This can be managed with guidance from your ostomy nurse.

Ulcerative colitis can cause severe tiredness. The combination of “chronic inflammation, poor sleep, anemia, dehydration, and malnutrition can leave patients feeling depleted,” McElyea says.

After your ostomy operation, it’s normal to feel tired and weak for the first two to three months. Rest when you need to, but try not to spend long periods in bed during the day. Energy and strength gradually return.

Within the first four to six weeks after her ostomy surgery, “I began to eat more foods and regain strength,” Aswani-Omprakash says. “Slowly, I had the stamina to do things like cooking and cleaning. It took me a few months to start exercising, doing things like the elliptical or walking on the treadmill, going for long walks outside.”

She also worked with a physical therapist to rebuild muscle and strength. Now, Aswani-Omprakash is able to enjoy more intense activities without any problems. “I’ve had no issues going bike riding or playing basketball.” She describes the change as a “complete 180.”

For people living with inflammatory bowel disease, “even clothing choices become a source of anxiety,” McElyea says. “Patients often choose loose-fitting clothing for comfort and wear dark colors, just in case.” You may also have to carry around extra clothing for emergencies.

With an ostomy, you can wear the same clothes as you did before surgery.

Some people find ostomy support belts helpful. They keep the pouch secure, prevent leaks, and support its weight.

Aswani-Omprakash says that with a few thoughtful clothing choices, such as modest swimwear and cover-ups, she can keep her pouch discreet, even while swimming. “I was shocked that I could go swimming with an ostomy bag and that it didn’t fall off in the waves of the ocean. It’s never happened to me, and I go to the beach and pools a lot.”

Severe ulcerative colitis can make everyday tasks, such as work, school, parenting, and basic responsibilities, very hard to manage. “Many patients experience difficulty concentrating, fear of accidents, missed obligations, and a sense that they cannot be relied upon, despite their best efforts,” McElyea says.

“I was on disability — I could not work,” Aswani-Omprakash says.

After surgery, you’ll need time to heal and recover, but you can eventually go back to work or school. You might choose to get back gradually until you feel confident managing your ostomy. If your work involves manual labor or heavy lifting, your doctor can recommend ways to protect your stoma.

After her ostomy and recovery, Aswani-Omprakash returned to a full professional life, which includes running a nonprofit — the Strategic Alliance for Intercultural Advocacy in GI (SAIA) — and travelling frequently to attend conferences and meetings. “With an ostomy, I’m able to do that too,” she says.

When you have severe ulcerative colitis, factors such as pain, fatigue, body insecurity, and fear of urgency during sex can negatively affect intimacy, and some people avoid intimacy altogether as a result, McElyea says.

Aswani-Omprakash faced a lot of pressure from her South Asian family when she was considering getting an ostomy. “We are often told we can’t get married with an ostomy, that people will think it’s disgusting.”

After surgery, Aswani-Omprakash’s actual experience with her partner contradicted those fears: her boyfriend married her despite his family’s resistance. “We have a perfectly normal married life.”

While ostomy surgery reduces pain, fatigue, and urgency, you may experience challenges with body image. Some people with an ostomy report feeling less attractive or desirable. They also report trouble managing their ostomy during sex, concerns about odors, and a drop in intimacy or sexual drive. It’s important to communicate openly with your partner and care team about this.

As symptoms of ulcerative colitis worsen, “social life often becomes nonexistent,” says McElyea. You may find yourself canceling plans often and feeling anxious about leaving home. Travel can feel impossible.

An ostomy removes the constant worry about looking for a bathroom and results in increased confidence in leaving the home, says McElyea. After her surgery, Aswani-Omprakash was able to have an active social life again and has been able to travel all over the world.

While an ostomy does not restrict travel, it does need extra planning. You need to pack enough pouches for your trip and include extras in case of delays. You may also want to take a small waterproof mat to protect bedding in case of an unexpected leak. If you fly, tell the security officer that you have an ostomy pouch before the screening process begins.

“Because so much of this illness is invisible, patients often carry an emotional burden as well,” McElyea says. She says, “If I hear another person say, ‘Well, you look fine,’ I might just cry.” Such comments make people feel “like their experience is being minimized,” she says.

Before surgery, Aswani-Omprakash faced intense fear about her health. “I was afraid that I was going to die if I didn’t do something about it.” At the same time, she was dealing with pressure from her South Asian family to avoid an ostomy, which was viewed as “impure”, adding to her distress.

After surgery, Aswani-Omprakash regained a sense of normalcy and now works to challenge stigma and cultural taboos surrounding ostomies.

McElyea notes that “emotional adjustment often takes longer than physical recovery.” You may feel a mixture of grief and gratitude. “Patients may experience a complex balance of relief and loss as they adapt to a new identity and body image.”

An ostomy isn’t the right path for everyone.

“The decision to pursue ostomy surgery is deeply personal,” McElyea says. She encourages patients to “weigh the pros and cons, and listen to your body.” Ask yourself: Are you living or simply surviving? Have you tried all reasonable medical treatments? Is there anything you haven’t tried?

Aswani-Omprakash urges people to seek information and peer support. “Talk to other ostomates [people who have ostomies]. There’s tons of us on social media. Check out some of our blogs. Talk to your doctors; see if they’ll introduce you to someone [living with an ostomy].”

Be open with your doctor about what is most important to you. This way, they can help you make the choice that aligns with your life.

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