10 Most Common Ostomy Patient Questions

Ostomy Lifestyle Specialist and fellow ostomate Laura Cox shares her most frequently asked ostomy patient questions (and she gives you the answers, too).

Editor’s note: in her blog series, Ostomy Lifestyle Specialist Laura Cox, Shield HeatlhCare, shares lifestyle tips and information with fellow ostomates. After being diagnosed with Ulcerative Colitis at the age of eighteen, Cox underwent ileostomy surgery in 2011. Today, you can find her one-on-one advice, support and insights at her OstomyLife blog, and on other Shield HealthCare social media sites.

In my experience working with a variety of healthcare professionals and patients, I continuously field a variety of questions about ostomies, some of which I hear again and again. And I’m always happy to answer them.

For clinicians working with ostomy surgery patients, it’s important to be armed with helpful information that can be shared in order to help them learn to be more comfortable and confident after surgery. That’s why I’ve compiled the ten most common questions that ostomy patients ask – along with my answers from personal experience. By sharing them within your facility, you can help your patients feel more confident as they heal and regain their independence.

1. When should I change the ostomy pouch?

Each person’s schedule will be unique to them, however many ostomy patients – including myself – prefer to change the pouch approximately 30-45 minutes after waking up. My personal schedule involves taking Imodium® right away when I wake up (but please remember to always check with a doctor before taking or administering new medications). I typically walk around a little bit before changing the pouch, and then wait until after the pouch is changed before eating or drinking. If you would like to watch a video on how to change an ostomy pouch, you can find them online. Or check out my own personal video on the Shield Healthcare YouTube channel.

2. Can I travel with an ostomy?

Yes! Traveling with an ostomy is not difficult, it just requires a little forethought. My advice is to precut some wafers, keep your ostomy supplies in your carry on, and take twice the amount of supplies that you think you will need. Try to empty your pouch before security screening to minimize any bulge the TSA might consider suspicious. If you don’t want to verbally explain your ostomy, bring a note or card that explains it. If security does notice the ostomy pouch, they will simply have you pat down your abdomen and test your hands. You can find more information about traveling with an ostomy in Shield HealthCare’s video.

3. What does a stoma look like?

A stoma is a bright red, shiny bit of intestine that protrudes slightly out of the abdomen and diverts output (urine or stool) into an external pouch. The size of the stoma can vary depending on the ostomy type. Urostomies tend to be smaller than ileostomies or colostomies, and several other factors can affect the size as well. The type of output, and frequency of output, will also vary according to the ostomy type.

4. How often is the pouch emptied? How do you empty it?

I empty my ileostomy pouch six to 10 times per day, when it gets about 1/3 to 1/2 full. The frequency will vary for different types of ostomies. Urostomy pouches are emptied around every two to four hours, while colostomy pouches are generally emptied less frequently; this is because the stool has mostly formed by the time it reaches the large intestine, so there are breaks between bowel movements. The number of times I empty my ileostomy pouch depends on what medications I am currently taking (Imodium® causes less output). It can also change based on my diet, hydration, and the order in which I eat and drink.

The pouch can be emptied while sitting or standing over the toilet. If it is a drainable pouch, you unclasp the bottom, unroll over the toilet and wait for gravity to empty the pouch. If necessary, you can gently squeeze any remaining content out with your hands flat and pressed together on the outside of the pouch. Clean the opening with toilet paper, then roll and clasp it back up. If you are using disposable pouches, you can detach the pouch from the barrier, throw it away in a discreet pouch, and attach a new one.

5. How do you shower and swim with an ostomy?

There are many products on the market that make this a very easy and secure process, such as waterproof barriers, paste and more. There are even special swimsuits designed for ostomates who don’t want their pouch to show. You can find more information about showering with an ostomy here, and more information about swimming with an ostomy in this article or this video.

6. Can you control when your ostomy output goes into the pouch?

For myself and other ileostomates, the timing is not something that can be controlled. This will be the same for urostomates. However, some people with colostomies can control their timing by irrigation. If you are interested in irrigation, please consult with a doctor or a clinician with specialty training in ostomy, such as an Ostomy Management Specialist® (OMS).

7. Is it difficult to choose outfits with an ostomy?

I still wear everything that I used to wear before my ostomy. Wearing patterns and darker colors will also help keep the pouch less noticeable. I often will wear Spanx® under my clothes to help conceal my stoma and pouch, and prevent bulges in fitted clothing. If you want to learn more about dressing with an ostomy, check out this blog post.

8. What are you able to eat with an ostomy?

Every person is different, but I can eat everything that I used to, with the exclusion of vegetables and some fruits (all of which must be skinned). I also have to chew all foods very thoroughly. Diet can make a big difference in the life of an ostomate, and it can really depend on the person and their body. When learning what you can eat after ostomy surgery, carefully introduce one new food at a time. I recommend starting with just a few bites, chewing very well, and drinking lots of water. Starting new foods with only a small amount can help avoid a potential intestinal blockage. For more information, see my video on nutrition with an ostomy, Shield HealthCare’s Registered Dietitian’s video, or read this article.

9. Can you have an intimate relationship or get pregnant with an ostomy?

Yes, you can absolutely have intimate relationships with an ostomy. An ostomy doesn’t put limitations on sexual intercourse, although sometimes they may be difficult to navigate socially. I’ve shared a few pointers and dating tips in this article “Intimacy and Ostomies.”

An ostomy also does not change your ability to get pregnant, though sometimes women with ostomies do have trouble conceiving due to scar tissue buildup after having ostomy surgery. For ostomates experiencing difficulty conceiving, in-vitro fertilization can help. If you are interested in this topic, check out Stephanie of the Stolen Colon to learn more about her successful pregnancy in 2015.

10. How do you bring up your ostomy with someone who doesn’t know?

Talking about your ostomy, though a little intimidating at first, can be a great way to build awareness of ostomies and help people understand life from your point of view. I find it’s best to tell the story of my illness first. Once people understand how sick I was, it is much easier for them to feel as positively as I do about my ostomy. Then I go on to explain that I had surgery to remove my colon and it not only saved my life, it improved the quality of my life, and I’m now very happy to have it.

If the person doesn’t know what an ostomy is, I give a brief clinical overview of what the surgery does, and then I explain that I have a pouch outside my abdomen because my colon was removed. If they are curious, I will discuss in it in greater detail. If they seem uncomfortable, I will leave it there. I always make sure to mention how much I love my ostomy, and that it has given me a second chance at life. If you want to find out more about having conversations with others about your ostomy, read this  article or watch this video.

What ostomy patient questions do you have?

Although these are the ten most frequent questions I am asked, I know there are always more. What questions do your ostomy patients ask you the most, and how do you typically answer? Are there any ostomy topics you’d like to know more about? Please leave your comments or additional questions below.

Wound Care Education Institute® provides online and onsite courses in the fields of Skin, Wound, Diabetic and Ostomy Management. Health care professionals who meet the eligibility requirements may sit for the prestigious WCC®, DWC® and OMS national board certification examinations through the National Alliance of Wound Care and Ostomy® (NAWCO®). For more information see wcei.net.