Very often, the compassionate care provided by an enterostomal therapy (ET) nurse can be the crucial difference that can change the life of ostomy patients. On the occasion of International Nurses Day, Asia’s first trained ET nurse Anjali Patwardhan reviews the increasing importance of ET nurses and ostomy care within the country
Imagine your physician telling you that your surgery will reroute your faeces to an opening on your abdominal wall and you have to manage your new stoma by using specially made ostomy pouches for life. It is certainly not a pleasant thought but more than thousands of people in India are living with this reality. Ostomies are created for variety of reasons and can be either temporary or permanent, depending on the disease and the problems involved. So an ostomate has to carry out his day-to-day activities along with stoma and a plastic bag collecting the 24/7 secretion of mucus, stool and urine. Thankfully, state-of-the-art pouches and advanced adhesives in the procedure and ostomy care has made life as normal as possible for ostomy patients.
Ostomy care was an isolated field until 1950s even in developed countries. It was only in 1975, that ostomy care was inaugurated in India at Mumbai by the formation of the Ostomy Association of India. The association was started at Tata Memorial Hospital under the aegis of Indian Cancer Society. Dr. DJ Jussawalla was the Chairman, with Dr. Praful Desai, Hiralal Narang, and Dr. LJ D’esouza as the Vice-Chairmen. The first stoma clinic came into existence in 1978 at Tata Memorial Hospital, Mumbai.
Challenges faced by ostomates
The surgery and lifestyle changes are huge challenges for patients who undergo ostomy and need tremendous emotional strength to combat and adjust to them. It is not easy to adapt to a life where one has to carry around their pouches and studies of patients reveal that most of them go through the psychological adaptation differently with some common reactions like concerns about a negative body image, anxiety to take care of the stoma, and worries about how the stoma will affect their relationships and social life. Ostomates avoid social contacts with friends and even family; they avoid their jobs, social confrontation, and workouts and limit themselves to home and hospitals.
Although each patient goes through the process differently, a study by the United Ostomy Associations of America (UOAA) shows that patients follow a similar path of adjusting to their life-skills, based on the consequences of their surgeries. These phases can be broadly divided into:
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Shock or panic which occurs immediately after learning of the need for an ostomy, or right after surgery in some cases. Patients experience anxiety, become distracted and may have trouble retaining information (including patient teaching) during this phase, which commonly lasts days to weeks
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Defense, retreat, or denial where patient practices avoidance techniques by refusing to participate in stoma care and may even get defensive. This phase may last weeks to months
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Acknowledgement is when the patient starts to accept the reality of living with a stoma. In the beginning, some patients may exhibit lack of interest, sadness, hopelessness, and anxiety. Sometimes they may express their anger by blaming others for their condition
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Adaptation and resolution is the final stage where anger and grief decrease and patients learn to cope with their circumstances constructively but it may take up to two years or more to achieve it
Though these phases are common in most cases, we must remember that patients adjust at their own individual rates and each may experience the phases in a different order, they may skip a phase, or may regress and pass through one or more phases multiple times depending upon their personal attributes, situations, etc. Studies show a patient’s return to full functioning after ostomy surgery depends on the quality and consistency of patient teaching and to provide effective teaching, we need to gauge his or her emotional needs depending upon the phase he/she is in. For instance, a patient who’s angry and in denial isn’t ready to learn the details of stoma management and one in the adaptation and resolution process will need support of the caregivers to help the patient accept body changes and regain the previous quality of life. Only an expert enterostomal therapy (ET) nurse can evaluate the phase that the patient is in and assist him accordingly.
The role of an ET nurse
Ostomy has more a psychological impact than a physiological one and requires compassion and patience from his doctor, nurses and family members to get through. Which is why, ET nurses require special training to cope with their patients. Not only do they need to be proficient in handling the patients’ physical needs, but also their psychological ones. Patients are usually concerned about food, clothing, and their ostomy appliances, which can lead to a consistent need for specially trained clinicians to help them cope with the challenge of living with an ostomy thus making the role of an ET nurse a crucial one for his well being.
An enterostomal therapy nurse, or ET nurse, is a registered nurse (RN) who has specialised training in treating patients with ostomies can prove to be the turning point in the life of an Ostomate especially when he/she is under severe strain and depression. An ET nurse may treat patients before, during, and after their ostomy surgery. From acute care hospitals, outpatient clinics, community, long term care and in independent practice, an ET nurse provides specialised holistic assessment and management as an interprofessional team member to meet the needs of individuals/families with ostomies, acute and chronic wounds and urinary and fecal continence problems.
ET nurses play an important role of educating and counseling patients with compassion. The nurses work along with the patients and surgeons to determine optimal stoma placement, assist with changing the ostomy appliance and stoma and skin care. They also provide emotional support and ongoing rehabilitation care to the patient and family.
There is no arguing about the fact that the life of an ostomate is not an easy one. It has its physical and psychological drawbacks. However, innovations in technology have already taken huge leaps to make life easier for the patients and we can be sure that with time, it will only get better. Trained ET nurses and clinicians’ compassionate care can make a crucial difference that can change the lives of ostomy patients and help them cope with their ailments. As in the words of Friedrich Nietzsche, “He who has the why to live can bear almost any how”. The ostomate needs support from his caregivers, family, friends and community to understand that.
The author is Asia’s first trained ET nurse who received her training on enterostomal therapy at the Cleveland Clinic Foundation Hospital Ohio, US from Norma Gill, known as the ‘Mother of Enterostomal Therapy. She was later positioned at TATA Memorial Hospital, Mumbai as a teacher of the ET course. She has since retired from the institution but still works for the cause by training and providing in-depth knowledge of ostomy care and management