What is a Colostomy?

A colostomy or ileostomy means that part of your intestines are hooked up through the front of your belly, and you go to the bathroom through a bag that attaches to your skin. Some colostomies are large, some small; some are on the left side of the abdomen, some are on the right, others may be in the middle. It all depends on the type of cancer you have and which part of the intestine was removed.

“Any time you have surgery on the intestine you can’t predict how well it’s going to heal. The majority of the time we can put patients back together, we connect one piece of the intestine back to the other. If we are able to do that successfully, they don’t need to have a colostomy bag,” explains Dr. Heather Yeo, a surgical oncologist at Weill Cornell Medicine and a SurvivorNet advisor. “That being said, sometimes people get blockages and need emergency surgery and those patients are more likely to need a temporary colostomy bag. Sometimes people have cancers that are too big to take out, and those people may also need a colostomy bag.”

Colostomy or Ileostomy?

When the large intestine (colon) is brought through this opening in the skin it's called a colostomy. Whereas an ileostomy is when a part of the small intestine (ileum) is attached to the skin. Your bowel movements are usually less solid than they used to be, and ileostomies tend to produce more watery/mushy content, compared to colostomies. You will probably have more bowel movements than you previously had, about 4 to 8 a day (but it's not mandatory to empty the bag every time).

‘I Began to Embrace it’: How One Survivor Learned to Live with a Colostomy Bag

How Will It Impact My Daily Life?

Chances are high that someone you've met or passed in the street is wearing a colostomy bag and you'd never know it. You should be able to live an active and normal life with your colostomy. There are many resources and supplies available that make them discreet. A plastic bag covers the ostomy so it doesn't smell, and if it gets full, you can just go to the bathroom and empty it. The stoma itself is not a source of pain, since there are no nerve endings in the stoma. Indeed, several studies have shown that quality of life in post-ostomy surgery patients is high.

"Once you get over sort of the psychosocial effects, you can lead a totally normal life. It’s not painful. It’s just getting used to a different way," Dr. Daniel Labow, the chief of the Surgical Oncology Division at Mount Sinai, told SurvivorNet in a previous conversation.

Here is guidance on some of the specific scenarios relating to having an ostomy bag.

• Clothes: You do not need to wear special clothes. Other people won’t be able to see your bag under your clothes. And it's good to carry a change of clothes and a change of ostomy equipment for the first months after surgery.
• Baths and showers: You can take a bath or shower with or without your bag on. It’s totally up to you. There are many different resources and supplies available, to cover and protect the stoma if you want.
• Sports: You will probably be able to play most sports. You might want to wear a special belt to protect your bag and keep it in place.
• Swimming: The pouching system is water resistant and is designed not to leak with the proper seal. Water will not harm or enter your stoma. You can swim with your bag on, as long as you are adapted to it. It's important to empty the bag before you swim and to check if the seal is secure.
• Sex: You can have sex. But you might want to wear a special wrap to protect (and cover) your bag during sex.
• Travel: When you travel, be sure to bring extra supplies to manage your colostomy. If you fly, take your supplies in your carry-on luggage.

Most of the time, an ostomy can be reversed. This means you will undergo another surgery two to three months after your cancer operation to remove the bag and put your intestines back together.

“We do it very rarely, actually, for colon cancer, almost never, unless there’s something about the surgery technically or an emergent nature to it that means we can’t safely reconnect,” says Dr. Labow. ” If we do do it for colon cancer, 99 percent of the time almost it’s temporary, could be as short as six to eight weeks, let everything heal, and then reconnect them down below.”

When should I seek assistance?

• Cramps that last more than two hours
• Continuous nausea or throwing up
• Bad or unusual odor for more than a week
• Change in your stoma size or color
• Blocked or bulging stoma
• Bleeding from the stoma opening or in the pouch
• Wound or cut in the stoma
• Serious skin irritation or sores
• Watery stool for more than five hours

Learn more about SurvivorNet's rigorous medical review process.

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