Need an ostomy? Here’s what to expect

If you need an ostomy as a part of your cancer treatment, you probably have a lot of questions. 

To learn more about who needs these surgical procedures, how they work and what to expect after you’ve had one, we checked in with colorectal cancer surgeon Matthew Tillman, M.D., and three nurses who work regularly with ostomy patients: Jeanine Hanohano, Alice Hung and Helen Trinh.  

What is an ostomy?

Tillman: An ostomy is a surgically created connection between an internal system — such as the digestive or urinary tract — and the skin. Some provide a new way for the body to pass waste. Examples include a colostomy and an ileostomy. Other ostomies give patients a new way to nourish themselves. Examples include a gastrostomy or a jejunostomy.  

A few very specialized procedures create new internal structures using existing tissues that act as reservoirs for waste. 

What are the most common types of ostomies?

Tillman: The most common types of ostomies are: 

• Colostomies/ileostomies: These divert stool from the small/large intestine. 
• Urostomies: This is when a patient’s bladder is removed, and their ureters are rerouted to drain into a piece of the small intestine that’s been connected to the skin.  

An ostomy could be located on one of a few areas along the large intestine. Words like “right,” “left” or “transverse” indicate the ostomy is located on the right side of the large intestine, on the left side or on the part of the intestine that stretches across the abdomen horizontally. 

Why are ostomies necessary? 

Tillman: Whatever comes in as food or drink must eventually go out as solid or liquid waste. But if there’s a blockage in the pipeline somewhere, such as from a tumor, we can use an ostomy to bypass that area.  

An ostomy might also be needed if the system can’t be hooked back together for some reason. That could be because the anus was removed or some tissue in the digestive tract is damaged or unhealthy and needs time to heal. An ostomy is simply the new end of the plumbing road — whether it’s temporary or permanent. 

Are ostomies usually permanent?

Tillman: That depends on the patient and their reason for needing an ostomy. You can’t remove an anus and connect the colon to anything, so the ostomy needs to be permanent if the anus is gone. But an ostomy is usually temporary if it’s used to protect a new connection or give it time to heal.  

The expected timeline for an ostomy is decided before surgery. Sometimes temporary ostomies end up becoming permanent. But most temporary ostomies can be reversed. 

Which cancer patients need an ostomy?

Tillman: Patients with certain colorectal and genitourinary cancers, most commonly. So do some head and neck cancer patients who have trouble swallowing. 

How often does an ostomy bag need to be emptied or replaced?

Hanohano: Patients generally have to replace their bags — which we call pouches or appliances — more frequently right after surgery than at any other time. This is because the stoma, or surgically created hole, shrinks during the first few months. So, the size of their appliance has to change accordingly.  

Once the stoma stabilizes and the pouch is sitting well, the average number of pouch changes is about two a week, or once every three or four days. Every patient is different, of course, but most people drain their appliances two or three times a day. 

Are ostomies visible through clothing? Will everyone know you have one?

Hung: Most ostomies aren’t visible. Generally, nobody even knows you have one unless you tell them. We also make recommendations for the placement of stomas before surgery. We take into account the person’s lifestyle, body shape, and the way their clothing fits, to make sure the ostomy is both as accessible and as discreet as possible. 

Do ostomy bags leak?

Hung: Ostomy bags leak sometimes, but that’s not considered normal. So, if your pouch is leaking, let your care team know right away. We want you to have the best quality of life possible, and that means making sure you have the right pouch for you. 

Trinh: The pouch you get when you leave the hospital might not end up being the right one for you long-term. If you lose or gain a lot of weight, for instance, you may need a different pouch. So, if you’re having a lot of leakage issues, let us know, and we can reevaluate you to find a solution. Finding the right pouch is a process of trial and error. 

How do you maintain an ostomy bag?

Hanohano: There’s nothing special to do. Check it every day to make sure: 

• the skin around the ostomy bag looks normal,  
  
• there’s no burning sensation beneath the appliance, and  
• the color of the stoma itself is still bright red or pink.  

Taken together, these things demonstrate that the ostomy is functioning properly, you have good circulation at the stoma site, and there’s no leakage or anything else causing skin irritation. 

Can you still go swimming and exercise with an ostomy?

Hanohano: Absolutely. I even have patients who go scuba diving and participate in triathlons.  

Hung: A lot of patients worry that their lives will be over if they get an ostomy. They don’t believe they’ll ever be able to leave the house. But that’s not true. You can travel, play sports and participate in all your favorite activities with an ostomy. 

Can you have sex with an ostomy bag?

Hung: Sure. Just keep extra pouches on hand, and empty your current pouch before getting intimate. There are also cute, sexy wraps and underwear products on the market that can conceal appliances if you’re self-conscious. 

How do you shower with an ostomy bag?

Hanohano: You can either leave it on or take it off. It’s up to you.  

What happens when patients have gas?

Hung: Some pouches have valves to release gas. Others have charcoal filters to disguise odors. And, sometimes, patients can “burp” their pouches discreetly when they go to a restroom. But normally, the only thing people might hear around someone with an ostomy is what sounds like their stomach gurgling. 

Where can patients get ostomy supplies?

Hung: You usually can’t find ostomy supplies at a neighborhood pharmacy. So, we educate patients on what supplies they need and how to order them from medical supply distributors before they leave the hospital. Often, ostomy supplies are covered by insurance. But if you’re in a bind and can’t wait, you can usually find them online. 

Anything else people should know about ostomies?

Hanohano: We do a good job of educating our patients, both before and after their ostomy procedures. We want to empower them to be as self-sufficient as possible, so we make sure they can both empty their pouches and replace them on their own before they leave the hospital. And, we follow up to make sure that they’re doing well. 

Request an appointment at MD Anderson online or by calling 1-877-632-6789.