I receive many messages a week with questions related to living with an ostomy from food to lifestyle and everything inbetween, so I thought I would sit down and answer some of the questions I see most often! I hope you find this helpful and please know that I am always, always willing to answer any questions that you may have. I am still learning to navigate life with an ostomy myself and I am more than willing to share the tips and tricks that I pick up along the way. Let's go!
What is an ostomy?
This is a question that it took me lots of lengthy explanations from doctors and research on my own to fully understand. I grasped the general concept of an ostomy, but really understanding how it worked took some time! First off, it is important to note that there are multiple kinds of ostomies. The three most common are colostomies- which are derived from the colon, ileostomies- which are derived from the small intestine, and urostomies- which are derived from the urinary system. With an ostomy, patients are given what is called a "stoma," which is an opening that allows waste to leave the body. Patients with ostomies wear ostomy bags, which must be emptied throughout the day.
For more information on the different kinds of ostomies and how they work, the United Ostomy Association of America, Inc. has many resources available here.
Does it hurt?
Nope! The stoma itself has no feeling. You may feel light pressure if your stoma is active, but there should not be pain. With that being said, there can be pain if you have skin irritation around the base of your stoma, ulcers, or sores. If there is irritation, when the stoma moves naturally, you will sometimes feel a little pain from the sensitive skin. Ensuring that you utilize skin barrier and have the correct size of bag is very important to help prevent skin irritation.
Can you swim with an ostomy?
Absolutely! Ostomy bags are waterproof, meaning that you can enjoy a day at the pool and still have confidence that your bag is in place. Some patients with ostomies even prefer bathing or showering without their ostomy bags to help give their skin a break. Having an ostomy will not limit your fun in the water! I would recommend, however, to bring extra supplies with you just in case. I always make sure I have extra supplies whether I am going to the post office or on a day trip to the lake.
What can you eat with an ostomy?
The short answer: almost anything! One of the greatest benefits of my ostomy has been the freedom that it has given me when it comes to food. For the first 4-6 weeks after your surgery, your surgeon will have you follow a low residue diet (low fiber, easily digestible foods) in order to allow the swelling from surgery to subside and ease your body into food again. Once you are cleared by your surgeon, you will be free to slowly introduce new foods into your diet, which can be both exciting and a little scary at the same time! Almost 10 months post-op, I enjoy leafy greens, fruits- almost anything my little heart desires! I am still slowly introducing new foods into my diet as I tolerate them.
With that being said, many ostomates are careful around foods with tough skins or that do not break down easily, as they will most likely come out as they go in and can cause a blockage. Corn, beans, mushrooms, and apple peelings are a few of the foods that I am cautious around. If in doubt, chew, chew, chew!
How do I feel confident again with an ostomy?
I am not going to sit here and tell you that gaining confidence with an ostomy is a walk in the park. The process of gaining confidence in your body with an ostomy begins with the process of acceptence. Do not feel pressured to come out of surgery and automatically accept your ostomy! It is 100% OK to take time to process what has happened and begin adjusting to your new life. One of my favorite ways to not only build confidence, but learn to love my ostomy is to remind myself of the many ways in which my life has improved because of my ostomy. In my case, my ostomy saved my life. So when I am feeling low self-confidence surrounding my ostomy, I remind myself that my ostomy is not just an appliance on my side; it is a symbol of an incredibly challenging battle that I fought and came out of ALIVE.
Healing, both physically and emotionally, takes time. You are doing amazing!
I am a family member or friend: how can I support a loved one going through this?
Surgery of any type can be a very emotional process. As a patient, you are feeling scared, frustrated, defeated, and often times misunderstood. During this time, the support of family and friends is so important and truly means the world to us. Sometimes this means talking through our feelings or sometimes it is simply a hug and a listening ear. It is important to understand, as a family member or friend, that we are going through a very challenging period in our life and at times, this can cause us to appear angry, frustrated, or reclusive. Please do not become frustrated or hurt by this. These are the moments when we need you the most.
What can I wear with an ostomy?
Navigating what to wear after receiving your ostomy can seem like a daunting process, but you have more options than you realize! High-waisted shorts, jeans, leggings, and swim suits have become staples in my wardrobe as they provide great coverage and support to your ostomy (not to mention how cute they look). Maxi dresses and skirts are also great for concealing an ostomy. If you are wearing tighter fitting clothing, there are many options for bands, belts, and high-waisted undergarments ranging in price to help create a seamless look. Believe it or not, maternity bands are a great way to help conceal your ostomy! Most major department stores will carry these for a decent price as well. Here are a few options!
- A maternity band for easily, inexpensive coverage and support.
- High-waisted SPANX provide excellent coverage and comfort.
- The Stealthbelt was created by Collin Jarvis, an ostomate and marathon runner. It is customized to your size, shape, and ostomy bag, creating an excellent fit at very high quality.
I encourage all ostomates to experiement with different clothing items and find pieces that make you feel comfortable and beautiful. An ostomy is nothing to be embarrased of.
Can you exercise with an ostomy?
Absolutely! An ostomy will not stop you from walking, running, swimming, biking, or hiking. With that being said, when exercising, I always make sure to wear some kind of belt or support band to eliminate the impact on my ostomy and keep the ostomy bag from moving around. I am also very cautious with core exercises, as hernias can happen to ostomate due to our compromised core muscles. Bottom line: enjoy exercising, but use caution and listen to what your body is telling you!
I truly hope that this helps answer a few of the questions that you may be having going into ostomy surgery or helping a family member or friend through. These surgeries are not easy, but having an ostomy does not have to mean the end of living a happy, fulfilled life. My ostomy has given me my life back and so much more and I am so passionate about helping others find the same peace and happiness with their ostomy.
Do you have a question that I have not answered here? Let me know!