New Year, New...Stoma?

For patients, undergoing stoma creation can be challenging and overwhelming. Helping patients navigate this part of their journey with inflammatory bowel disease is pivotal to their experience as well as maintaining the therapeutic patient/provider relationship. Stoma creation yields a multifaceted utility in inflammatory bowel disease. Often times stomas are created to allow perianal disease to improve, due to dysplastic changes, or because disease has become refractory to medical therapy. Starting the conversation with patients about the utility of fecal diversion can be tricky to navigate. Many patients have preconceived notions that are a reflection of the stigma that can be felt by many ostomates due to inaccurate representation in popular culture, ignorance or indifference by others, or even the language and attitude we, as healthcare providers, use when talking about stomas. Shared decision making is paramount to any conversation regarding stoma creation. Each conversation about the potential benefits to stoma creation are individualized to the etiology of the recommendation as well as the patients' understanding of life with a stoma. When having these conversations I like to engage the toolkit below:

1. All feelings about stoma creation are valid. For some patients it is a relief, for others it is a tragedy, for many it is fear of the unknown. Giving space for patients to process the recommendation of stoma creation allows them to have a deep understanding of why their team is recommending a stoma and what benefits it could offer them.
2. Be clear. Sometimes fecal diversion is temporary and sometimes it is not. Do not be vague in an effort to avoid a hard conversation. If the stoma will likely be permanent then say that. Have a frank conversation about the likelihood of reversal and what objective benchmarks need to be met in order to consider reversal.
3. Talk about the nitty gritty. Life with a new stoma comes with a litany of questions and concerns. I like to talk about what living an entire day from morning to night looks like for many ostomates. Setting expectations for pouch emptying, effluent titration, dietary modifications, wear time, and concealment set the patient up for success postoperatively.
4. Check your language. A resounding sentiment I hear in my practice from ostomates is that language matters. When the healthcare team talks about stoma creation in a negative way it impacts their relationship with the stoma. For many patients, stoma creation is the best choice to restore their quality of life. We need to support patients not only through referring them to an expert IBD surgeon but also by being mindful of the way we talk about the process. Stomas are lifesavers, let the language reflect that.
5. Resources are gamechangers. Meeting with a certified ostomy specialist is pivotal to the patient being prepared for the journey of stoma creation. Many ostomy specialists are aware of the local resources that will benefit patients. Ensuring patients are aware of their resources helps ensure they have access to them! The United Ostomy Associates of America website is a bounty of information for patients as is the Crohn's and Colitis Foundation. Many chapters have local support groups. There are also many groups online who meet virtually. Meeting with other ostomates and other patients with inflammatory bowel disease can provide solidarity and a shared experience.

-Marita Kametas, IBD APN and ostomy specialist

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