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Everyday Life with an Ostomy Bag

Embrace the freedom it offers, not the restrictions it brings.

“… having a bag or pouch attached to their body is a huge emotional adjustment. It might feel odd or even scary at first. Those are completely normal feelings.”

- Colorectal Surgeon, Amy Lightner, Cleveland Clinic Main Campus.

The impact of living with a stoma bag is tough on every patient, especially when there is greater likelihood that he or she will have to live with it long term and will participate in activities that could make the bag visible. Going to the beach or playing sports can be difficult to handle, but know that you can be active, wear fashionable clothes and live a full life with a stoma bag.

In my last blog I wrote about nutrition and the stoma bag. This blog focuses on the other aspects of your life that can be impacted by the ostomy site and how you can navigate the change. When everything is functioning properly your activities of daily living may not be impacted at all but there can be problems such as excessive time related to ostomy care, fecal leakage, skin irritation, clothing issues, stigma, and social embarrassment.

While these may seem like restrictions, the idea is to get them out of the way, so that you can begin enjoying a better quality of life in spite and despite the bag. Here are a few things you should keep in mind to begin with.

Yes, you can exercise!

Just do not lift anything greater than 10 pounds for 6 weeks after surgery. Always use good body mechanics. Do not lift with your abdomen to avoid a hernia around the stoma.

You should be able to play sports and do other physical activities that you were able to do before your surgery. Just ask your doctor before you play contact sports, such as football or soccer. Keep in mind that sweat may loosen the adhesive on your pouch. If you do a lot of sweat-inducing physical activities, you may want to consider a pouch system designed for that. A stoma guard may be a good idea for some contact sports. Swimming and hot tubs are fine as long as you make sure to empty the pouch before you get in the water, and use waterproof tape.

Yes, you can shower or bathe just as you always did!

If you choose to bathe without your pouch, you don’t have to worry. Normal exposure to air or water will not harm the stoma, and water does not enter the opening. Choose a time for bathing when the bowel is less active. Avoid oil-based soaps, moisturizing soaps, lotions and moisturizers in the area where you attach the skin barrier which can make your skin greasy and keep the barrier from adhering. Strong chemicals or perfumed soaps may irritate the delicate peristomal skin. If you have hair around your stoma, you may need to keep it shaved so the pouch will stick properly.

Yes, you can control the timing of your output. Think Colostomy irrigation.

A colostomy irrigation is like an enema given through the stoma. It allows you to control the timing of your output. You empty the colon once a day or every other day so that you do not have to have stool output the rest of the day. This doesn’t work for everyone and some people don’t want to do this. An irrigation takes about an hour a day to perform. You can begin irrigating after you are passing stool once or twice a day or about two months after surgery. Ask your nurse or ostomy nurse about how to perform a colostomy irrigation.

Yes, sex and intimacy will remain very much part of life!

Sexual relationships and intimacy are important aspects of your life. Communication is critical to re-establishing your sexual relationship. The time around surgery and recovery can be very emotional, so sharing your experiences with each other is important. Your attitude is a key factor in re-establishing sexual expression and intimacy. Being open and honest can help you feel more secure and prepared for sex after your surgery. A period of adjustment after surgery is to be expected. Sexual function in women is usually not impaired. A gradual approach to the resumption of sexual activity may help you and your significant other to feel more comfortable and confident with each other. Physical contact during sex does not hurt the stoma. While you might need to change positions to make sure that the ostomy pouch isn’t actively in the way, it should not harm your ostomy.

Yes, you can have a normal and uncomplicated pregnancy!

Most women with ostomies do very well during their pregnancy and experience no complications before or after the birth. For women seeking to become pregnant their ability to conceive does not change. The changes to the stoma and the peristomal skin can be quite dramatic as the pregnancy progresses, so being aware and prepared is key. If you are thinking about becoming pregnant, you should consult with your cancer care team and ostomy nurse to determine which products are best suited to your needs throughout the pregnancy.

Yes, you can stay worry-free about medications!

The majority of medication absorption occurs in the upper small intestine, whereas the large intestine is responsible for absorption of slow-release medications. Some medications that are taken by mouth may not be as effective in people with a colostomy or ileostomy. This is because the medications take longer to absorb. A liquid medication can be absorbed faster and may work better. Many medications can affect the frequency of your bowel movements. Pain meds can cause constipation while some antibiotics and antacids may cause diarrhea.

Yes, you can be stress-free about pouch overfill!

As you get used to your ostomy, it helps to plan food and liquid intake so that your pouch doesn’t fill during a long meeting or trip. Plan to empty your pouch frequently. It’s best to do so before it’s half-full. You’ll also want to keep your ostomy supplies with you at all times. You never know when you will need them in case of a leak or other accident.

Yes, you can travel extensively!

Many people with ostomies travel extensively, from camping trips to cruises to airplane excursions around the world. Take double the supplies you think you need to last the entire trip. Carry an extra pouching system and other supplies on the plane with you in case your checked luggage is delayed or lost. You can print a travel card from the United Ostomy Associations website to show the TSA agent to make them aware that you have an ostomy. When traveling by car, keep your supplies in the coolest part, and avoid the trunk or back window ledge. Seat belts will not harm the stoma when adjusted comfortably.

Yes, an ostomy is ok while you are on other cancer treatment!

Some people with cancer may need an ostomy while they are receiving other cancer treatments. You may need help caring for your ostomy if you are too tired or sick after a treatment. If you are receiving radiation therapy in the area of your ostomy, you may need to remove the pouch during treatment. Radiation therapy may also cause skin changes near your ostomy. Ask your cancer care team about any special precautions you should take to care for your ostomy during cancer treatment.

Yes, you can choose a pouch that makes your life comfortable.

The type of pouching system that was used in the hospital may need to be changed as the healing process takes place. Your stoma may shrink and will require decreasing the opening size of your pouch to match your stoma. Your personal lifestyle or peristomal skin sensitivities may require you to try another pouching system after a recuperative period. There are a wide variety of pouches that you can choose from so make an appointment with your ostomy nurse to evaluate your management system.

“This topic (ostomy pouch) doesn’t get a lot of attention because it’s very private and people do not want to talk about poop, stool or gas,” Dr. Lightner says.

But the very fact that its real for you means, you should talk about it as extensively as you need to with your doctors and healthcare team. There is no shame in it. It’s a fact of life, like many others.

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Reason to Hope

There is new research from Brigham and Women’s Hospital that indicates a Western-style diet that is rich in red and processed meat, sugar and refined grains/carbohydrates is tied to higher risk of colorectal cancer through the intestinal microbiota.  Gastroenterology, 2022;DOI:10.1053/j.gastro.2022.06.054 

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