Eliminating Recreational Barriers for Patients With an Ostomy

Ostomy surgery comes with a huge spectrum of mixed emotions, with the pervasive theme, “Will I be able to live a ‘normal’ life?” When it comes to recreational and other everyday activities, the answer is, “Yes!”

“Can I swim?”

“Will I be able to travel? Camp? Participate in martial arts?”

“Yes, yes, yes, and yes!”

An ostomy should not keep anyone from the activities they would otherwise be able to do. However, education and access to extra resources are critical for patients to participate confidently in their preferred recreational endeavors.

Simply knowing that an activity is possible for others is not good enough. After my 8-year-old daughter’s ostomy surgery, we read that swimming with her appliance should not be an issue and it would be no more likely to leak underwater than it would anywhere else. However, after less than an hour of playing in the river, she would always come out covered in poo. Luckily, a very informative support group discussion helped us realize that air inside her pouch was causing it to act as a flotation device, pulling the appliance away from her skin and forming a leak. Without this timely advice, we may have avoided public pools indefinitely. Instead, it marked a critical transition into figuring out how to keep the stool inside her bag no matter what she wants to do.

Common concerns related to recreation with an ostomy fall into three main categories, each with its own adaptive considerations. Educating patients about potential solutions and resources within these categories can go a long way toward eliminating barriers and improving their confidence, competence, and overall quality of life.

LEAKAGE

The first and most perturbing concern includes situations in which ostomy leakage is more likely or especially important to be avoided. This includes swimming, especially in public pools, as well as high-impact physical activities such as gymnastics, martial arts, and CrossFit. I have yet to talk to an ostomy parent who has not had nightmares about their child’s appliance coming loose in a public swimming pool, and many new ostomates wait months or even years before taking their first plunge. However, many activities that do involve an increased risk of leakage offer social and emotional fulfillment as well as the added benefit of physical activity.

Proven tactics for reducing leakage include reinforcing the edges of the appliance with barrier extenders or waterproof tape, changing the appliance at least 12 hours before the activity, securing the appliance with an ostomy belt or wrap, and emptying the pouch of air and stool. Participants may also want to check the area around their ostomy often, allowing them to take care of any leakage before it becomes enough to be obvious to others. More information about swimming with an ostomy and how to maintain a good seal on the appliance and can be found on the Frequently Asked Questions page on the United Ostomy Associations of America (UOAA) website.

ACCESS TO FACILITIES

A second important challenge is access to appropriate bathroom facilities. Many recreational activities include commercial travel and/or a significant distance from the nearest available toilet. In addition, restrooms are sometimes not available for the public to use even in well-developed community areas. To help combat this, the UOAA recently launched a set of webpages addressing the need for accessible restrooms to be available to the public. This includes information on how to communicate with business owners and the “We Can’t Wait” restroom access app that can help patients locate open facilities in their vicinity.

Just because a bathroom is available does not mean it is accessible. I recall a particularly bumpy airplane ride when my daughter’s bag filled, and we had no choice except to change it mid-flight. Despite a very curious look from the stewardess, my daughter and I both piled into the tiny stall that everyone knows is not really big enough for even one person. With her head and shoulders banging against the slanted ceiling, my daughter stood on top of the closed toilet seat while I comically maneuvered supplies and tried not to knock her down or turn the sink on while we worked together to perform the change. It felt a little crazy, but we made it work!

A few important things to consider when planning for awkward bathroom situations are to pay attention to where accessible facilities may be found, time bag empties for when you have access to the best facilities possible, and order extra supplies ahead of time. Extra garbage bags are essential for travel and ostomy care in public. Flushable, compostable pouch liners are also an option to facilitate easier and faster empties and may be especially helpful in tight quarters, such as those found in airplanes, trains, outhouses, and portable toilets. The UOAA’s travel communication card can also be carried in a wallet and presented to help patients gain access to restrooms that might be otherwise unavailable.

Wilderness-based activities such as camping, hiking, and boat travel can be a concern when they leave ostomates without a bathroom facility of any sort. In this case, biodegradable liners and ostomy output may be buried using standard leave-no-trace principles, but durable supplies must be packed out with other garbage. We have found that this makes for stinky garbage but, overall, the process actually goes more smoothly with an ostomy than not because it is easier to get waste into the hole!

PHYSICAL IMPACT

A third major consideration is protecting the ostomy from potential damage due to impact or abrasion of the abdominal area.

The first question my daughter had for health care providers after recovering from her surgery was, “Can I run and play and do whatever I want?” To her, this meant rock climbing, duct tape wars, ninja warrior class, paintball, and gymnastics. When she asked about these activities and was told that she could not do anything that might involve an impact to the stoma, it brought her to tears.

“But I thought I was going to get to have a normal life,” she said.

Despite the challenge, we have yet to find a worthwhile activity that she cannot participate in safely.

Many different options for stoma protection, including custom vests designed for martial arts, are available commercially. Most often, an ostomy cover or wrap offers sufficient protection from abrasion by seat belts, pets, or stray branches. However, a protective guard can be used for activities with increased trauma potential. Guards fit over the ostomy appliance and are placed either inside a wrap or attached using a belt around the waist. These can also be constructed at home using thick cardboard, closed-cell foam, or a three-dimensional printer.

CONCLUSION

Wholesome recreation is an essential part of any healthy lifestyle, and people with ostomies need not be limited in what they can do. However, many will impose limits on themselves because of insufficient resources, education, or problem-solving skills. Health care providers play a vital role in revealing possibilities to their patients by informing them about potential solutions to challenges related to leakage, access to facilities, and physical impact in the recreational setting. With the right support and a healthy dose of creativity, anything is possible!

Ms Smith is a recreation therapist. Please send inquiries to advocacy@ostomy.org. Information in this article was provided by the United Ostomy Associations of America. UOAA does not endorse particular products, manufacturers, providers, or other sellers of ostomy products. This column was not subject to the Wound Management & Prevention peer-review process.