The Ostomy Files: Hospital Land versus the Real World

  A quick way to learn what issues are important to individuals living with an ostomy is to visit online ostomy-related bulletin boards and chat rooms. People facing surgery, recovering from surgery, or dealing with the daily struggles of integrating an ostomy into their lives seem to feel comfortable in the virtual presence of others who truly understand what it means to live with a stoma. This level of comfort, safety, and (sometimes) anonymity allows the individual to be frank and open.

  What is impressive are the common threads – two problems reported regardless of age or type of surgery: 1) the emotional devastation of pouch leakage in social or intimate situations and 2) the lack of psychological and emotional support from healthcare professionals.

  Thoughts shared about the first common thread involved a variety of horrifying leakage incidents – tail closure failures and pouches detaching from skin barriers, to name a few. One person shared the mortifying experience of a tail closure becoming dislodged, his feces staining the front of his slacks and coursing into and onto his shoes – all in a restaurant in front of a partner in a new relationship. Another individual described how her pouch leaked all over her boyfriend, his carpet, and his bed while they were having sex. These few examples capture the associated humiliation and shame and how difficult it was to ever again face the person who witnessed the leakage.

  Discussion surrounding the second common thread involved the belief that healthcare professionals do not seem to grasp the psychological and emotional issues associated with living with an ostomy. One group of emails discussed the difference between what were called “Hospital Land” and the “Real World.” In Hospital Land, ostomy surgery is a routine managed nearly every day by health professionals who care for dozens of patients, a series of steps after surgery that eventually leads to discharge home. Everyone in Hospital Land knows about ostomy surgery; elimination into an ostomy pouching system is “socially” acceptable there. Healthcare professionals (referred to as fixers) were accused of “not looking at the whole person” and “believing patients will adjust over time.” Patients felt healthcare professionals regarded the surgery as a “cure” for everything. Clinicians rarely asked, How are you doing with this? or were poorly equipped to answer patient questions related to emotional adjustment.

  The Real World, on the other hand, is where the patient lives – a place where not everyone knows about ostomy surgery and where talk about toilet habits is not socially acceptable. In this world, patients must negotiate barriers and cope with unforeseen events and struggles. In this world, patients must live every day with the “nitty gritty” of their rerouted gastrointestinal or urinary tract with friends, lovers, family, and co-workers. The Real World is not as safe as Hospital Land.

  Some individuals supported their healthcare professionals, saying it is impossible for healthcare professionals to predict how an individual will or will not cope with ostomy surgery. Healthcare professionals receiving the most praise were empathetic and compassionate and spent an adequate amount of time explaining, listening, and answering questions. One woman thought patients could be a part of a healthcare professional’s education by sharing their lived experiences and feelings. She believed such an opportunity would better equip the healthcare professional to help the next ostomy patient.

  If we step back and look at these two issues, they are actually closely aligned. Educating the healthcare professional, as well as the patient, is a major component of improving patient outcomes. If all levels of healthcare professionals (including surgeons) become educated about the psychological and emotional adjustment to ostomy surgery, provide time to teach and listen, and ensure state-of-the-art ostomy products are used correctly, perhaps some of these devastating and emotionally scarring events could be eliminated. Ostomy products have changed dramatically over the years – improved tail closures, “clip-less” tail closures, effective odor filters, more secure pouch-to-skin barrier attachment, customizable moldable skin barriers, and a myriad of other new technologies can have a direct impact on quality of life. However, if patients are not exposed to them or instructed in their proper use, the benefits will never be realized. For persons with an ostomy, Hospital Land and the Real World should not and can no longer exist as parallel universes.

  Ostomy-related online chat rooms and bulletin boards: United Ostomy Associations of America www.stuartonline.com Tuesdays, 9:00 p.m. Eastern Time

Addendums

  With regard to Snow Birding: Traveling with an Ostomy (“The Ostomy Files,” Ostomy Wound Management. 2007;53[2]:12-14), an important source of information was overlooked: www.tsa.gov. Obviously, this will be pertinent to those flying within the US, but surely similar resources are available for those flying outside the US as well.

  The article states quantities “only 3 oz or less are allowed” in carry-on luggage for all liquids, gels and aerosols; this is incorrect. The “3 oz-or-less” rule applies only to non-medically indicated items. The TSA website indicates that all medications, including over-the-counter medications and ice packs and other items necessary to keep meds fresh, are allowed. Any health-related items – eg, prescription medications, over-the-counter medications, vitamins, food, and equipment – are allowed as long as it is clear that the quantity being carried is appropriate to the duration of the time away from home, (a month’s supply for a 1-week trip may be questioned).

  One clinician who travels internationally must carry on items that might give security people pause, including refreeze-able ice packs to keep one of her medications cool. To ensure smooth passage, she obtained a letter from her physician stating what she required (ie, all the medicines, including over-the-counter forms and the ice pack). This is not required by the TSA and so far she has not needed it, but the letter provides her greater peace of mind. For people with conditions that require a lengthy and possibly embarrassing discussion in the middle of a security line, she highly recommends following her example. OWM is grateful to Kate O’Halloran, PT, CWS, for providing the additional information.

The Ostomy Files is made possible through the support of ConvaTec, a Bristol-Myers Squibb Company, Princeton, NJ. This article was not subject to the Ostomy Wound Management peer-review process.