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Rethinking the needs of ostomates

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Dr Avanish Saklani, professor -colorectal /robotic, Tata Memorial Hospital, Mumbai believes that a fresh perspective that involves digital solutions like apps to enhance communication between ostomates and healthcare providers is required

Creation of stoma (colostomy/orostomy) is a life-saving procedure for patients with bowel/bladder cancer or sever inflammatory bowel disease like ulcerative colitis and Crohn’s disease. As much as 20 per cent patients refuse treatment as they are not comfortable with idea of living with stoma. Religious beliefs, social stigma, congested accommodation and concerns about interpersonal relationships may cause patients to default treatment. This leads to cancer related death and lower 5 year survival.

The life-saving ostomy surgery is a big step taken by the patients The surgery is often challenging, but if tackled with minimal invasive surgery ( laparoscopy or robotic ) can have an early recovery and a better body image when perceived by patients . The healthcare community plays a significant role in ensuring a quality physical and mental well-being of the ostomates. Preoperative counselling, marking stomas and providing literature (written/ digital) as well as patient testimonials help. Ostomy associations play a major role in this,

Let me share some details regarding the challenges faced by ostomates. Post an ostomy surgery, the patient uses a prosthetic device such as a pouch or an ostomy bag which provides a means for the collection of human waste from a surgically diverted biological system and the creation of a stoma. While using this, ostomates face few physical issues such as – sensation of the pouch getting filled, problems to the skin by stool or urine leakage or the changing of adhesives, creating noise which is not comfortable in social gatherings-flatulence, odour from the pouch, and many more. Healthcare community primarily works towards educating and making the patients understand the ostomy surgery and the care it requires. Surgeons must provide patients with thorough understanding of the personal risks, the risks of the surgery, the potential complications, and the benefits of the surgery.

Medical professionals also need to focus on various facets of ostomy surgeries to help patients. The challenges faced by patients vary and the doctor has to be available and provide the necessary resources to them. People have their own ways of coming to terms with their body undergoing ostomy surgery, as some are just not able to accept it. To some patients, the procedure comes as a natural way of living. A large number of patients worry about how they are going to cope with their daily activities and wonder how they can keep up with their social commitments, carrying their stoma along.

The best way to create awareness among the patients regarding the various aspects of ostomy is, by encouraging them to interact with other patients who have undergone this surgery. It helps the new patient feel at ease with the surgery and become aware of all the issues that he/she may face with the new development on the body.

The initial interaction helps new patients understand the process in its complete entity – the surgical procedure, the duration of recuperation and the body’s acceptance to this change. A crucial step is making the patient mentally prepared for what is going to happen. The post-surgery phase takes a toll on the patient’s mental health due to their inability to perform daily activities in the normal way.

Along with the patients, their families need to be counselled on how to manage the stoma and provide support for ostomates. Here again, interaction with the existing patients and their families can help them come to terms with the current situation.

Counselling the family on the appropriate pre-operative and post-operative measures can make the family more sensitive about the issue, which in turn makes them provide proper support- physically and mentally to the patient. Surgeons should make the patient understand and get to know the stoma, give tips regarding the skin care routine that should be followed, right fit of ostomy pouch, the right diet, and further motivate them towards starting their new life.

Ostomy surgeries are associated with stigma and causes immense stress to the patients. They are often scared or embarrassed to seek help. Discussions on these topics make it easy for new patients to understand the situation and take control over their life. It is important for healthcare community to build avenues- which are safe and inclusive, to help reduce the mental stress of patients and generate awareness.

The digitally connected eco-system can play a major role in providing timely assistance for patients with stoma. A robust and consistent support care strategy would entail a digital infrastructure, capable of linking the patient to doctors, medical assistants and other patients. Imagine a mobile app dedicated for Ostomy community. This will enable 24 hours assistance for patients.

Apart from that, patients can also get access to product demonstration videos, videos on self-care habits, nutritional advice and personal experience of other patients with ostomy. Such digital solutions will help improve the patient-healthcare provider communication.

A fresh perspective that involves digital solutions to enhance the communication between patients and healthcare providers is required. Surgeons are already working on trying to provide resources to help patients cope mentally and physically post-surgery. In clinical settings, health professionals must strive to elevate patient experience by using state-of-the-art solutions that can ensure a holistic approach, preparing the patient well in advance for the surgery and its consequences.

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