If you need an ostomy as 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 them, we sat down with colorectal cancer surgeon Matthew Tillman, MD, and three nurses who regularly treat ostomy patients: Janine Hanohano, Alice. Hung and Helen Treen.
What is a stoma?
Tillman: A stoma is a surgically created connection between an internal system such as the digestive or urinary tract and the skin. Some provide the body with a new way to eliminate waste. Examples include colostomy and ileostomy. Other ostomies give patients a new way to eat. Examples include gastrostomy or jejunostomy.
Several very specialized procedures create new internal structures using existing tissues that act as waste reservoirs.
What are the most common types of stoma?
Tillman: The most common types of ostomy are:
- Colostomy/ileostomy: move stool away from the small/large intestine.
- Urostomy: This is when the patient’s bladder is removed and their ureters are redirected to drain into the part of the small intestine that has been connected to the skin.
The stoma may be located at one of several sites along the colon. Words such as “right”, “left”, or “transverse” indicate that the stoma is located on the right side of the colon, on the left side, or on that part of the intestine that runs horizontally through the abdomen.
Why are ostomies needed?
Tillman: Everything that comes in as food or drink must eventually come out as solid or liquid waste. But if there is a blockage somewhere in the tubing, for example due to a tumor, we can use a stoma to bypass that area.
A stoma may also be needed if, for whatever reason, the system cannot be connected together. This may be because the anus has been removed, or some tissue in the digestive tract is damaged or unhealthy and needs time to heal. A stoma is simply the new end of a waterway—either temporary or permanent.
Are ostomies usually permanent?
TillmanA: It depends on the patient and the reason they need an ostomy. You cannot remove the anus and connect the colon to anything, so the stoma must be permanent if there is no anus. But a stoma is usually temporary if it is used to protect a new joint or to give it time to heal.
The expected timing of the stoma is determined prior to surgery. Sometimes temporary stomas become permanent. But most temporary stomas can be turned out.
Which cancer patients need a stoma?
Tillman: most often in patients with certain types of colorectal and genitourinary cancer. The same thing happens with some head and neck cancer patients who have trouble swallowing.
How often should the ostomy bag be emptied or replaced?
Hanohano: As a rule, patients have to change their bags, which we call bags or devices, more often immediately after surgery than at any other time. This is because the stoma, or surgically created opening, shrinks during the first few months. So their device size should change accordingly.
Once the stoma is stabilized and the bag fits well, the average number of bag changes is about two per week, or once every three or four days. Of course, every patient is different, but most people empty their appliances two or three times a day.
Are stomas visible through clothing? Will everyone know that you have it?
Hung: Most stomas are not visible. As a rule, no one even knows that you have it until you tell them. We also give advice on stoma placement before surgery. We take into account the lifestyle of the person, their physique and how their clothes fit, so that the stoma is as accessible and inconspicuous as possible.
Do ostomy bags leak?
Hung: Ostomy bags sometimes leak, but this is not considered normal. So, if your bag is leaking, report it to your care team immediately. We want you to have the best possible quality of life, which means making sure you have the right bag for you.
Trin: The package you receive when you leave the hospital may not be right for you in the long run. For example, if you have lost or gained a lot of weight, you may need a different bag. So, if you have a lot of leaking issues, let us know and we can re-evaluate you to find a solution. Finding the right bag is a trial and error process.
How to care for an ostomy bag?
Hanohano: There is nothing special to do. Check it every day to make sure:
- the skin around the stoma bag looks normal,
- there is no burning sensation under the device, and
- the color of the stoma itself is still bright red or pink.
Taken together, this indicates that the stoma is functioning properly, you have good circulation at the stoma site, and there is no leakage or anything else that causes skin irritation.
Can you still swim and play sports with an ostomy?
Hanohano: Absolutely. I even have patients who go in for scuba diving and triathlons.
Hung: Many patients worry that their life will be over if they get an ostomy. They do not believe that they will ever be able to leave the house. But it’s not. You can travel, play sports and participate in all your favorite activities with an ostomy.
Can you have sex with a pouch?
Hung: Of course. Just keep extra pouches on hand and empty your current pouches before intimacy. There are also cute, sexy capes and lingerie on the market that can hide appliances if you’re shy.
How to shower with a pouch?
Hanohano: You can either leave it enabled or disable it. You will decide.
What happens when patients have gas?
Hung: Some packages have valves to release gas. Others have carbon filters to mask odors. And sometimes patients can quietly “burp” their bags when they go to the toilet. But usually, the only thing people can hear near the stoma is something like a gurgling in the stomach.
Where can patients get ostomy supplies?
Hung: You usually can’t find ostomy supplies at your local pharmacy. In this way, we inform patients about 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 at a stalemate and can’t wait, you can usually find them online.
What else should people know about stoma?
Hanohano: We do a good job of educating our patients both before and after the ostomy procedure. We want to empower them to be as self-sufficient as possible, so we make sure they can both empty their bags and change them themselves before leaving the hospital. And we’re monitoring to make sure they’re doing well.
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