Finding the Silver Lining as a Teenage Crohn's Patient
Life With Crohn's: Should You See a Stomal Therapist?
Learn more about how these certified nurses can teach patients about stoma care.
By Ashley Welch
Medically Reviewed by Kathryn Keegan, MD
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At some point in the course of living with an IBD like Crohn's disease, some people may need a stoma. This typically occurs when various other Crohn's treatment options have proved ineffective.
A stoma, which can be temporary or permanent, is a surgically created opening through the abdomen for expelling waste. A pouch is then fitted over the stoma to collect feces.
Life with a stoma is very different and requires an adjustment period. Some people look to a stomal therapist or a certified wound, ostomy, and continence nurse for guidance. These healthcare professionals undergo specific training in all aspects of care associated with a stoma and can provide education on what you should expect before and after the procedure.
“We see patients before surgery and go over all the practical things with them: how to manage it, how to live with it, how to deal with it day to day,” says Terri Cobb, a board certified wound, ostomy, and continence nurse at the Cleveland Clinic in Ohio. “Our main goal is to get the patients to a level where they are back to their normal lives as seamlessly as possible before they had the stoma.”
Help With Stoma Care
One of the most important things stomal therapists will discuss with you is how to care for and change ostomy bags.
“The key to doing well with an ostomy is to have a good fitting system over the stoma so that there’s no odor and nothing leaks,” says Marjorie Lebo, a nurse practitioner in the division of colorectal surgery at the Penn State Health Milton S. Hershey Medical Center.
Before surgery at Penn State Health, patients attend a one-hour education session where they speak directly with an ostomy nurse about the basics of care and watch informational videos. Individuals are also given a take-home kit with a pouching system in it so they can practice.
Stomal therapists also provide diet and nutritional counseling and answer practical questions, including whether patients can shower and swim with an ostomy bag on. The answer to both is yes.
“There are very few restrictions with a stoma,” Cobb says, “Probably the biggest one is heavy weight lifting. Within the first six weeks of surgery doctors don’t want patients lifting anything heavier than a gallon of milk. After that you can increase your activity and get back to an exercise routine.”
Dealing With the Emotional Impact of a Stoma
For many people, a stoma comes with a number of emotional concerns, including how it may affect their daily activities, social life, and intimate relationships.
“A big role of ours is to almost be like a coach,” Cobb says. “Patients have a lot of fears about what their lives are going to be like with a stoma. We reassure them that their fears and anxieties are normal and encourage them to talk about it. We also let them know that their stoma will become part of their daily routine. It’s just bathroom hygiene.”
No matter how patients feel about their stoma, they can continue see their ostomy nurse as a resource for any questions that may arise before and after surgery.
Other resources for stoma support include:
There are many other resources online and support groups with chat rooms.
“A lot of our patients come to us very educated about what an ostomy is,” Lebo says.
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