Ostomy Journals: Introduction
Ostomy surgery is a complex medical procedure. Ostomies are performed due to conditions, such as bowel obstruction, inflammatory bowel disease, rectal cancer, infections, and severe traumas. Although ostomies can save lives, many patients report further physical complications, poor quality of life, and decreased social interactions. Therefore, ostomy journals must be implemented in practice to assess and improve patients’ well-being.
Since a large number of facilities and professionals are turning to digital solutions to engage patients, electronic ostomy journals become essential tools in the assessment and monitoring of ostomy patients. In fact, with advanced processing and storage capabilities, digital tools such as online surveys, mHealth apps, and discrete wearables have the potential to improve health outcomes worldwide.
Types of Ostomy Procedures and Patient Outcomes
Assessing and monitoring ostomy patients can be daunting. Ostomy journals must cover a wide range of medical conditions, surgical procedures, and types of ostomies. Ostomy procedures, as explained above, can be performed to treat numerous conditions, such as cancer and acute diverticulitis. There are several types of ostomies. Colostomy, for instance, is when a part of the colon is connected to the abdominal wall, waste is passed through the stoma (the surgically created opening in the body), and collected into an appliance (an ostomy bag) (Dabirian et al., 2011). Ileostomy, on the other hand, is the procedure in which the small intestine is brought to the abdominal wall. There are also urostomies – or when urine is diverted away from a diseased bladder. Procedures can be temporary or permanent. Note that there’s also a multi-step surgery known as J-pouch which involves a temporary stoma and the creation of an internal reservoir inside the abdomen (“The Most Specific Types of Ostomies”).
While ostomies prevent fatal outcomes, with more than 100,000 people undergoing an ostomy surgery only in the US (Sheetz et al., 2014), there are numerous physical complications and emotional difficulties patients may experience after the surgery, especially in terms of quality of life. In fact, data shows that more than 80% of ostomy patients experience psychological and physical complications (Pittman et al., 2014). Interestingly, a systematic review conducted by Sprangers and colleagues revealed that in cancer patients, those with a stoma experience more difficulties in life. High mortality rates are also warning. As a result of the complexity of the problem, researchers worldwide have started to implement ostomy journals to identify symptoms and improve patient health outcomes.
Ostomy Assessments and Stoma-QOL Questionnaires
While addressing different psychosocial needs is crucial, evidence suggests there are no valid and reliable stoma-specific tools (Simmons et al. , 2009). One of the few valid tools to measure both the incidence and severity of patient outcomes is the Pittman Ostomy Complication Severity Index (OCSI). The survey is easy-to-use and time-effective. Another valid and reliable ostomy-specific tool is the Ostomy Adjustment Inventory (OAI) – 23. Simmons and colleagues assessed 570 ostomy patients and measured the psychometric characteristic of their inventory. The team reported a positive correlation (r=0.72) between OAI-23 and Felton’s Acceptance of Illness Scale. The Stoma Acceptance Questionnaire (SAQ), on the other hand, is another effective tool designed to measure ostomy acceptance and community outreach. Note that Bagnasco and colleagues used Mokken scaling techniques to assess ostomy acceptance and resumption of normal activities (Bagnasco et al., 2017). The Ostomates’ Self-Adjustment Scale (OSAS) also assesses acceptance, but the diagnostic utility of this 30-item scale needs to be explored in detail (Simmons et al., 2009). Interestingly, other scales that have been used in research are the Psychosocial Adjustment to Illness Scale (PAIS) to measure vocational impairment and family dynamics, and the Present State Examination to detect mental disorders. These scales, however, are not ostomy-specific.
That said, assessing the impact ostomy surgeries have on patients’ quality of life has become essential. The Stoma-QOL questionnaire is one of the most significant surveys implemented in research and practice. The Stoma-QOL is a patient-reported outcome (PRO) used to asses quality of life in patients, especially in those with ileostomy and colostomy. The tool consists of 20 questions across four domains: sleep patterns, activity, and daily routines, family interactions, and general social interactions. Scores vary between 0 and 100 (Erwin-Toth et al., 2012). Note that demographic differences (e.g., age, sex, social status) and their impact on patient-reported outcomes should be explored (Lai et al., 2018). Interestingly, gender bias can become an obstacle for the effective treatment of ostomy patients and their readjustment. As women, especially in developing countries, have various roles (e.g., cleaning and cooking, managing home and work, and taking care of children and older adults), ostomy procedures can affect female patients significantly (Gautam & Poudel, 2016).
Ostomy Journals and Digital Health
Since the need for adequate ostomy measurements is eminent, ostomy journals can only help exerts identify complications, assess the quality of life, and improve patients’ well-being. Digital ostomy journals become an inseparable part of digital healthcare practices, giving patients the opportunity to report both physical and psychological outcomes, such as:
- Irritant dermatitis and skin damage: Skin irritation can lead to extreme levels of pain and distress. In fact, a study conducted by Dabirian and colleagues revealed that skin problems are among the most severe physical complications that can lead to poor quality of life. Therefore, ostomy journals can help patients report the severity of skin irritation as well as the size of the stoma. Visuals, such as charts and images, can help patients monitor their stoma.
- Stoma pain and discomfort: Pain is a leading cause of the poor quality of life. In ostomy patients, in particular, specific care is needed soon after the surgery. As the abdomen will feel sore and colic pain may occur, ostomy journals can help people report types of pain, severity, frequency, duration, and location. This information can be used to improve pain relief options. In addition, reminders or text messages can help people comply with medications.
- Severe conditions, such as stoma bleeding, retraction, infection, and necrosis: Serious physical complications, such as stoma bleeding, need immediate consideration. Since digital tools improve patient-doctor communication and help patients and professionals exchange data in real time, digital ostomy journals and ostomy wound management apps can facilitate data exchange 24/7, which can save lives.
- Pouch leakage and dietary changes: Pouch leakage is a major factor to consider. In fact, it affects patients’ well-being in 62% of cases (Dabirian et al., 2011). Note that experts claim that having a good seal around the stoma, even while it’s shrinking, can prevent pouch leakage and pain. As it takes some time for the stoma to work – with the output being hectic in the beginning – digital ostomy journals can help patients track the effect of their diet and lifestyle. Since human beings can’t digest certain foods in the small intestine, professionals reveal that short-term food restrictions are associated more with ileostomies than with colostomies. Online libraries can provide healthy suggestions on nutrients and recipes. Note that ostomy sensors and app notifications can help patients track how full their appliances are.
- Body image and quality of life: Body image, defined as the perception of physical appearance, is one of the biggest challenges which ostomy patients face. Many people report struggling with poor body image. Interestingly, Pittman and colleagues concluded that stoma site marketing and education are important factors to help patients accept their stoma and new lifestyle. Experts should focus specifically on people’s emotional needs. Digital ostomy journals can monitor people’s body image in relation to time since surgery and assess their support system.
- Adjustment to living and behavioral changes: Adjustment to living is another aspect that needs special consideration. It involves both physical and psychological levels. Various factors, such as preoperative care and employment, may affect further adjustment. Although determined patients with skills in self-care can regain independence within a month after the procedure, the transition from the hospital to their homes is vital. Behavioral changes and social outcomes can be easily recorded in a digital ostomy journal. Note that many patients experience social anxiety related to unwanted odor and gas. Research shows that with appropriate training and support, such problems gradually disappear. Online forums, Facebook pages, hotlines, and chat options can help patients find people who have experienced similar complications and get social support.
- Decreased pleasurable activities and sexual problems: One of the most common problems is a decrease in physical and pleasurable activities. Sexual problems and body image issues, in particular, are common in ostomy patients. Patients with stoma experience problems with their relationships, with half of the patients being inactive after the surgery (Symms et al., 2008). Such role limitations are linked to various aspects; changes in clothing and spiritual beliefs can also contribute to the problem. Digital ostomy journals can be used to explore similar problems and to improve doctor-patient communication.
- Depression and suicidal thoughts: Ostomy procedures are complicated. Apart from all the physical complications, ostomies can lead to stress, anxiety, shame, and poor quality of life. Patients feel isolated from the rest of the world, including their families. Many experience high levels of alienation, loneliness, and depression. Note that poor adjustment may affect survival time. Patients need to cope not only with the ostomy but the condition which led to the procedure. In cancer patients, for instance, fear of death significantly impacts the quality of life. Ostomy journals can help patients monitor emotional changes and suicidal thoughts and receive the social support they need.
Ostomy Journals: Conclusion
Although ostomy surgeries are live-saving procedures which reduce disease burden, many ostomy patients report poor quality of life. Common complications are leakage, pain, changes in lifestyle, and social anxiety.
That said, recent studies have shown that technological advancements can improve patient outcomes. Apps that focus on the cleaning of the ostomy bag, for instance, are beneficial tools (Rouholiman et al., 2018). Digital ostomy journals, in particular, can help patients monitor and report psychical and emotional complications. They can improve doctor-patient communication, practice, and research, as well as reduce costs and time spent as an inpatient. From tracking dietary changes to assessing pain severity, Qolty supports the effective implementation of ostomy journals in practice to improve patient outcomes.
Bagnasco, A., Watson, R., Zanini, M., Catania, G., Aleo, G., & Sasso, L. (2017). Developing a Stoma Acceptance Questionnaire to improve motivation to adhere to enterostoma self-care. JPMH, 58 (2).
Dabirian, A., Yaghmaei, F., Rassouli, M., & Tafreshi, M. (2011). Quality of life in ostomy patients: a qualitative study. Patient Preference and Adherence.
Erwin-Toth, P., Thompson, S., & Davis, J. (2012). Factors Impacting the Quality of Life of People With an Ostomy in North America: Results From the Dialogue Study. Journal of Wound, Ostomy and Continence Nursing, 39 (4).
Gautam, S., & Poudel, A. (2016). Effect of gender on psychosocial adjustment of colorectal cancer survivors with ostomy. Journal of Gastrointestinal Oncology, 7 (6), p. 938-945.
Lai, E., Peterson, A., Liu, G., Karimuddin, A., Crump, R., & Sutherland, J. (2018). Psychometric validation of the Stoma-QOL questionnaire in a Canadian cross-sectional sample of colostomy and ileostomy patients. Scandinavian Journal of Gastroenterology, 53 (6).
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Rouholiman, D., Gamble, J., Dobrota, S., Encisco, E., Shah, A., Grajales, F., Kin, R., & Chu, L. (2018). Improving Health-Related Quality of Life of Patients With an Ostomy Using a Novel Digital Wearable Device: Protocol for a Pilot Study. JMIR Research Protocols.
Simmons, K., Smith, J., & Maekawa, A. (2009). Development and Psychometric Evaluation of the Ostomy Adjustment Inventory-23. Journal of Wound, Ostomy and Continence Nursing, 36 (1), p. 69-76.
Sheetz, K., Waits, S., Krell, R., Morris, A., Englesbe, M., Mullard, A., Campbell, D., & Hendren, S. (2014). Complication Rates of Ostomy Surgery Are High and Vary Significantly Between Hospitals. Diseases of the Colon and Rectum.
Symms, M., Rawl, S., Grant, M., Wendel, C., Coons, S., Hickey, S., Baldwin, C., Krouse, R. et al. (2009). Sexual health and quality of life among male veterans with intestinal ostomies. Clinical Nurse Specialist.
The Most Specific Types of Ostomies. Retrieved from https://www.ostomy.org/what-is-an-ostomy/