How will my ostomy affect my life?

Let us be the first to welcome you as an ostomate — our word for those going on the ostomy journey. You may be wondering how your ostomy is going to affect your daily activities and quality of life. The great news is… not too much!

Following ostomy surgery, everyone has an adjustment period ranging from several weeks to months. During this time, you get used to managing your ostomy, figure out what to safely eat and drink, and adjust to pooping in a new way! Once people have gotten used to their ostomies, most people report that they’re able to go about their daily activities the same way they did before. Some patients find they need to eliminate or restrict some foods from their diets, but others are able to eat more or less the same way they did before their surgery.

Here are some common questions answered and tips and tricks to help you during your adjustment period and beyond.

What kind of ostomies are there?

Simply put, an ostomy is a way of redirecting bodily waste — like poop — from the usual exit site to a new surgically-created hole (called a stoma).

There are many different types of ostomies. Colorectal cancer patients commonly have colostomies (an opening from the colon to the outside of the body) or ileostomies (an opening from the ileum, or end of the small intestine, to outside of the body).

Some patients may have a urostomy (ostomy for urine drainage) or a nephrostomy (ostomy for kidney drainage). This section mostly pertains to colostomies or ileostomies. If you have questions about other types of ostomies, join COLONTOWN and ask our community!

Do I have to limit my regular activities?

Fortunately, the short answer to this question is no. In the COLONTOWN community, we have ostomates traveling the world, riding horses, climbing mountains, skiing, surfing, swimming, skydiving, and any other crazy thing you can imagine. As one COLONTOWN community member put it, “The only thing we can’t do is poop in the normal way.” That said, there may be some restrictions on diet and exercise you may need to follow while recovering from surgery.

What can I eat?

It depends. Immediately after surgery, you will probably be advised to follow a liquid diet until your bowels wake up and you are getting output (poop) from your stoma.

After that, you’ll probably be asked to follow a low-residue diet for the first 4-6 weeks while your body adapts to a new way of going to the bathroom. Low-residue means avoiding high-fiber foods, such as raw fruits and vegetables, whole grains, beans and legumes. Some low-residue foods include white bread, pasta, rice, cheese, yogurt, eggs, lean meats, nut butters, well-cooked veggies, canned and peeled fruits. Although it might sound unhealthy to some people, it’s important to follow your team’s dietary recommendations. This low-fiber diet will help prevent blockages in your first few weeks after surgery, and will slow down digestion so you’re less likely to experience dehydration or an electrolyte imbalance.

After you have recovered from surgery, you can start to reintroduce fiber to your diet. However, all bodies are different, so food tolerance can vary a lot person to person. Some ostomates have found that they need to cut out things like raw veggies, fruit with skin (like apples) and nuts. Others find they can eat what they want, as long as they make sure to chew it well before swallowing. It may take some time to figure out what works for you.

A good strategy is keeping a food journal and introducing a new food every couple days. If you end up with a blockage, or some other problem, you will know what caused it and be able to avoid that food in the future.

Another thing to mention is sometimes ostomates find whole capsules of medications or vitamin supplements in their pouch. If you have an ileostomy, it’s important to avoid “enteric coated” tablets, as those are meant to pass through the stomach undigested. You can speak to your team about finding another form of medications that you can digest and absorb more easily.

Read more about diet here.

Want to learn more about ostomy nutrition?

Read this guide from the United Ostomy Associations of America.

Can I exercise?

Yes! After surgery, it’s important to follow your team’s advice when it comes to exercise. The general recommendation is to avoid lifting anything heavier than a gallon of milk for a while after surgery to avoid hernias. Talk to your oncologist to figure out how long that period is for you.

When you’re given the all-clear to start exercising again, it’s important to build up gradually. Even if you were an Olympic runner, after taking time off for surgery, you should start slow and listen to your body. Physical therapy can be very helpful. You should be able to get a referral from your surgeon if you are interested.

Over time, you should be able to build back your strength and mobility and gradually return to your normal exercise routine.

Read more about exercise here.

Can I wear my normal clothes?

Yup, no problem. You should be able to wear all the same clothes you wore before your surgery. Some people like to use an ostomy cover or swim belt to help secure the pouch into place. COLONTOWNies recommend Ostomy Secrets and Stealthbelt, but feel free to find what works best for you. Check out Stomaplex, Ostomy Armor and NuHope for other products as well.

Can I shower, bathe, swim, etc?

Yes, your pouch should be completely waterproof, so any water activities should be fine to do. Some people feel more secure wearing an ostomy belt in the swimming pool, but it isn’t necessary.

It’s important to keep in mind that some pouch systems are more sensitive to getting wet than others. Some seals may loosen if they are submerged in water for a long time, like in a bath or swimming pool. This doesn’t mean you have to change your pouch after just a swim, it just means that you may need to change your pouch more frequently if you swim regularly or take lots of baths.

Can I travel?

Yes of course! In COLONTOWN, we have ostomates traveling the world. There are some basic precautions you may want to think about, but an ostomy should not restrict your ability to travel in any way.

Before traveling, make sure to pack enough supplies for your trip (plus a few extra, just in case). Make sure to take a list of your products and product numbers, in case you need to make an emergency trip to a medical supply store. Make sure to keep two sets of supplies in your carry-on bag in case there are any delays, or your luggage gets lost. Also, if your bags need cutting, you may want to pre-cut holes to avoid having to travel with scissors.

If you’re flying, be aware that your ostomy will probably show up during the security check. You should tell the agent that you have an ostomy. They will probably conduct a manual pat down around the area, but you should not be asked to remove any clothing or expose your ostomy.

If you’re staying in a hotel, AirBNB, or someone else’s house, you may want to take a small waterproof mat (like a puppy pad, or baby changing mat) to sleep on. This will protect the mattress in case of an accidental leak.

Traveling with an ostomy?

Here’s a travel communication card you can print out and show at security checkpoints. You can also use this if you need emergency access to a restroom.

What about public bathrooms?

Once you get used to your ostomy, you’ll become more and more confident getting back into your regular swing of things — including using unfamiliar bathrooms! Depending on the placement of your ostomy, different people have different tricks for using public bathrooms. If you have questions, COLONTOWN’s Stoma City group is the best place to get answers!

If you have a colostomy, you can have some increased control over the timing of your bowel movements through irrigation. Once a day, or once every other day, you can flush the colostomy with warm water. This might not be right for everyone, so chat with your ostomy nurse first. If you want to learn more, check out this article by Saint Luke’s Health System.

Will I smell bad?

Nope. If your ostomy bag is properly sealed to your abdomen, it won’t smell. If you notice an odor, it means that your pouch is starting to leak, so it’s probably time for a bag change. There are powders that can help reduce odor inside the ostomy bag. If you find that the smell bothers you when you empty your bag, this could be a good product to try.

What if I’m struggling with my ostomy?

You’ve now read about COLONTOWNies traveling the world and kicking butt with their ostomies — but what if you’re having problems? First of all, everybody is different, and may respond to surgery in different ways. Be gentle with yourself as you heal and learn how to manage your ostomy.

Chat with your healthcare team about your symptoms, and what you’re experiencing. Ask to speak to an ostomy nurse who specializes in helping patients adjust to their ostomies! Depending on the type of ostomy you have (ileostomy vs colostomy for example) management will look different for you.

If you are having trouble with your bag system, feel free to shop around for other options. Convatec, Coloplast and Hollister are the three largest ostomy supply companies in North America — but there are a lot of different bag systems to use and brands to try. If you are interested in trying new systems, reach out to these companies for free supply samples.

There can be a bit of a learning curve when it comes to reordering bags and other supplies. Order more than you think you need at first, just to make sure you don’t run out. Keep track of how many bags you use, and which activities may lead to you changing your bag more often.

If you are struggling with anything else, or have specific questions, talk to your healthcare team. And remember you can always join COLONTOWN to chat with other ostomates about their experiences!

Want more information about managing your ostomy?

Check out these cancer.org articles on managing colostomies and ileostomies.

Carepartner perspective by Elaine

Diagnosed: April 2018

Disease: Stage IV sigmoid rectal cancer with liver mets, BRAF v6008

If you are frightened about an ostomy, I totally get it. My adult son was absolutely terrified about the possibility, but when he had a bowel blockage, it was his only option. However, he discovered the surgery gave him a newfound quality of life he did not anticipate. Armand had stage IV rectal cancer, with his primary rectal-sigmoid tumor intact. His bowel movements were painful, irregular, and inconsistent, fluctuating between on-set diarrhea and constipation. He spent a lot of time in the bathroom.

After his colostomy surgery, it was a learning curve to get acquainted with a new normal. Looking at his stoma for the first time was rough for both of us. But my son, who was intrigued by science and the human body quickly got over it. The ostomy pouch he went home with after surgery was a two-piece stoma bag that they taught us now to use before he was discharged from the hospital. Once we were home and a couple of weeks after the swelling went down, an ostomy nurse fitted him with a one-piece bag. The new bag made things way easier, convenient, and quicker for him to change it. He only needed my assistance the few times he was very sick from treatment. He managed everything and started living his “best life”.

What he learned was the ostomy gave him freedom. He no longer had to worry where the closest bathroom was when he left the house. Before his surgery, I remember when his cousin planned a big party that he really wanted to attend. He hadn’t seen his friends and family since his cancer diagnosis, and he was emotionally ready, we were ready. I was crushed when he changed his mind about going because his cousin had only one bathroom.

While recovering from the surgery he visited his favorite coffee shops again, took long car drives, and was inspired to plan a “bucket-list” trip to Italy with his daughter, fiancé, dad and me. As a philosophy major it was his greatest wish to show his daughter, Roma, all the places he fell in love with after college. He would not have been able to fulfill that memory for all of us had he not had an ostomy.

Through my volunteer work in the colorectal cancer community, I have met many people (including children) thriving with an ostomy. Most can have it reversed, and the ones that can’t have adjusted extremely well. If you, or your loved one are in the latter group, trust me, you will adapt. As a mom, I have always given my son unconditional love and support. As a primary caregiver that cares for and loves a CRC patient, I think the same holds true. I wish all the best for you.

Want to learn more about ostomies?

Join one of our COLONTOWN support groups:

In Stoma City you’ll find answers to your ostomy questions and lots of stories of ostomates living life to the fullest!

Want to join? Fill out the registration form here.

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