‘Superliving’ with my ostomy

15 March 2024
‘Superliving’ with my ostomy

Damaris Morais talks about how her life experiences have only become more fulfilling since getting her ostomy

My life after the age of 28 can be defined in two distinct phases: Before Ostomy (B.O.) and After Ostomy (A.O.). B.O. was marked by years of illness, pain and debilitating diarrhoea. Despite these challenges, I managed to work as a teacher during the brief periods of remission, but I was constantly plagued by fear and discomfort. A.O, which began at the age of 35 and has continued for 22 years, has been a period of not just survival but of ‘superliving,’ as I like to call it. These years have been filled with both hard work and joyful experiences. Most importantly, I am filled with deep gratitude for the expertise of doctors and the life-altering procedure of ostomy, which has allowed me to thrive despite the ongoing presence of inflammatory bowel disease (IBD).

Damaris and friends

I learned from all this that I have almost no control over anything in this life – now, not even my bowel movements, and that it frees me up to be happier.

My experiences have taught me that I have far less control over life than I ever imagined – even my bowel movements. This realisation has set me free and allowed me to cultivate a greater sense of happiness. As soon as I made a recovery from my surgery, I began volunteering with the Goiás Ostomates Association (AOG), helping to rehabilitate new ostomates. Two years on, I started visiting ostomy patients at the local cancer hospital, where I could listen to their thoughts and worries, as well as share my own experiences. I'm also an advocate for the rights of people with disabilities, emphasising that disability doesn't equate to inefficiency. Rather, it simply means managing the need to evacuate (or urinate) differently and requiring specific equipment for this purpose.

I'm constantly expanding my horizons. I have no dietary restrictions (apart from chewing well and avoiding excessive fibre). Due to my illness, I was granted disability retirement at the age of 35. However, following my ostomy, I regained such vitality that in 2015, I embarked on a psychology degree and re-entered the workforce. I'm an avid traveller and enjoy nature-based sports like hiking and mountain biking. I travel a lot and I love sports that take me closer to nature, like hiking and mountain biking. 15 years ago I switched from a car to a bicycle and I love the freedom that it now gives me.

Today, at the age of 52, I am a clinical and health psychologist at the Federal University of Goiás, having embarked on a new career. Embracing academia and working at a university has been a rejuvenating experience for me. Most of my colleagues are much younger, digital natives and I've had to play catch-up in terms of technology. In 2021, I decided to further my education and enrolled in a specialisation program in Health and Hospital Psychology.

At the age of 56, I commenced my master's degree in Public Health, focusing on Health Promotion and Education. I've had the privilege of researching the coping strategies of ostomy patients at the cancer hospital in my city, where I've been a dedicated volunteer for 20 years. I've already interviewed 205 patients and am currently analysing the data to complete my dissertation. Among all my endeavours, what brings me the most joy is volunteering. I often say that I am a psychologist by profession and a volunteer by vocation.

When people ask me how I've managed to adapt so well, I emphasise that there's no single formula for success. I've observed that understanding and appreciating our bodies and our histories while avoiding projecting pre-existing problems onto the ostomy, has helped me face this new reality without great suffering.

Damaris in Serra Dourada, Goiás, Brazil

Ostomy does impose limitations on certain types of work, particularly those that require significant physical exertion, due to the risk of hernia or prolapse. Additionally, high-impact abdominal exercises are not recommended. However, activities that do not involve intense physical exertion are generally safe for ostomates. Abdominal exercises can and should be practiced under the guidance of a qualified physical educator.

Ostomy is not a cause of weight gain. Like everyone else, if we consume more calories than we expend, we will gain weight. Ostomy does not preclude sexual activity, but certain treatment sequelae may restrict specific positions or even penetration. In such cases, it's crucial for the individual to recognize that sex encompasses far more than just physical intimacy and that our entire body is a source of sensuality. Adapting to life with an ostomy requires a balance between hygiene and vanity. With a successful surgery, high-quality ostomy supplies, and proper guidance, ostomates can achieve a high quality of life.

My mission in studying and working with this topic is to empower ostomates to perceive ostomy as a life-saving intervention. Ostomy is not a curse in my journey; it is a profound blessing, for this, I am deeply grateful for my faith.

Damaris Morais is a volunteer who has had a stoma for 23 years. She has a Master’s in Public health
Instagram: @ostoviver