Home » «Adenocarcinoma: this is how the stoma saved my life. But there is still a lot of ignorance on this topic, even in hospitals”

«Adenocarcinoma: this is how the stoma saved my life. But there is still a lot of ignorance on this topic, even in hospitals”

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«Adenocarcinoma: this is how the stoma saved my life.  But there is still a lot of ignorance on this topic, even in hospitals”

diRuggiero Corcella

For nine years Rossella Guzzi has lived with a hole in her belly and a bag. A condition that is little talked about due to the strong taboos that are still present. The information campaign “We are a work of art” by Fais aims to help overcome them

Living with a stoma is no walk in the park. What is a stoma? An opening created with surgery on the abdomen that allows feces or urine to escape if the digestive or urinary system is unable to perform these functions independently. For those who have to do it it is not a walk in the park either from a physical or psychological point of view.

As Rossella Guzzi, 66 years old from Cernusco sul Naviglio (Milan), says: «Many ostomate patients are ashamed of the device, they don’t speak, they hide their new condition even from friends and relatives and leave the task of everyday life to their caregiver. This is because they don’t accept stomas. I, on the other hand, immediately faced the path with extreme serenity and calm: I discovered that I had incredible strength. There was no shortage of difficulties, accidents, embarrassing situations and yet I was able to look forward and sometimes laugh about it. I have discovered new people, nor have I pushed others away, but the important thing for me is to be alive and we celebrate every anniversary of the date of my surgery in my family.”

Now retired, he worked in the marketing of the beauty sector, moving from trichology to cosmetics, make-up and fragrances. «A job that has always fascinated me», she says. She has been married for over forty years, she has a lawyer daughter and in her free time she loves sailing, reading and gardening.

The discovery of the disease

The disease took her by surprise in April 2014: «Thinking I had hemorrhoids, I went to a proctologist who immediately told me that it was something much more serious. The diagnosis was adenocarcinoma of the anus-rectal junction. After an adjuvant treatment of radiotherapy and chemotherapy, on 28 August of the same year you underwent elective surgery according to Miles, with the creation of a definitive colostomy. Immediately after a further cycle of chemotherapy.”

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Nine years have passed since that distant 2014 and, as strange as it may seem, Rossella’s life has not changed: «I have an orifice on my belly, I evacuate differently, but the rest is identical to before. The stoma was my lifesaver, after all I had no choice.”

The hospital experience

In addition to her character, Rossella was lucky enough to have a positive hospital experience, dictated by having met an exceptional surgeon: «He looked after me as I never would have believed, but I admit that this is not the case for everyone. Knowledge about the stoma is zero, there is so much ignorance. Only those who have come into contact directly or through third parties know what it is. General nurses, for example, don’t know how to change a bag.”

Volunteering

Which is why since 2017 Rossella has been an active volunteer for ALSI – Lombard Association of Ostomates and Incontinents. «As ALSI we are present at the European Institute of Oncology and once a month we give a course on stomas with a theoretical and practical part for nurses. Furthermore, we have agreements with hospitals and we fight to make them understand how important the presence of an ostomate in the clinic is and even more so in the initial phase, when the surgeon tells you that you have to have an ostomy. Patients ask you the most disparate questions, they need to be listened to and telling them about our experience helps them.”

Through ALSI Rossella met DO it, of which he is now a member of the Board of Directors: «Joining forces helps us, the road is uphill but we persevere. I really believe in the “We are a work of art” campaign. As I always say, the bag is noticed the first time, then it becomes an integral part of the person. The stoma is my body, for this reason we must feel like works of art: we may not like it, we may not be understood, but we have more strength than those who have not had this experience.”

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Masterpieces revisited

From classical art to pop art, passing through Art Nouveau. A journey of reinterpretations and inspirations characterizes «We are a work of art», the awareness campaign promoted by FAIS, the Federation of Incontinent and Ostomate Associations. Artistic masterpieces which, thanks to the technique of visual art, wear or re-propose incontinence and stoma aids.

To the six masterpieces of classical art – Birth of Venus (Sandro Botticelli); Perseus with the head of Medusa (Benvenuto Cellini); Venus of Urbino (Tiziano Vecellio); Myron’s Discus Thrower; Temptation of Adam and Eve (Masolino da Panicale); Cupid and Psyche (Antonio Canova) – presented last year, three new works are now added: Motherhood (Gustav Klimt) and two inspired by Campbell’s Soup Cans and Shot Marilyns (Andy Warhol). An exhibition that does not intend to stop, but which already looks towards new masterpieces.

Selected works, revisited but still unique. The message is loud and clear: just as a masterpiece of art remains such even if revised with a medical device, so the person’s identity is not affected if an ostomy bag, a catheter or a diaper is used.

A topic that is still taboo in Italy

«Talking about incontinence and stoma in Italy is still a taboo: shame, fear, embarrassment in fact generate prejudices that often strongly influence the lives of the most fragile people and their families. This is why last year we created this campaign, to shine, even provocatively, a spotlight on a condition that is rarely talked about, but which significantly affects the lives of the people concerned, and often also the caregivers. With these new works the campaign evolves: from the affirmation of individual identity it comes to deal with specific themes such as motherhood, well represented in Klimt’s work, but also those inspired by Warhol allow us to reach a wider audience who knows little or nothing on these issues” underlines Pier Raffaele Spena, FAIS president.

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«The search for new works was arduous, classical art lends itself better than others to revisiting. However, we believe the choice of pop art, specifically of two icons like those of Andy Warhol, can be successful in raising awareness among an increasingly wider audience about the daily life of people with stomas and incontinence” declared Mattia Zucca, Head of Healthcare Strategy & Communication of MCO International Group, the agency that collaborated on the creation of the campaign.
The exhibition can be visited virtually: thanks to 3D technology the viewer can immerse himself in the museum environment and observe the works.

Visit Who the virtual exhibition.

7 million Italians suffer from it

In Italy there are over 7 million aged 18 to 70 who suffer from urinary or fecal incontinence. Incontinence represents a significant socio-health problem: the onset, in fact, increases with age, but does not spare the youngest. For non-hospitalized subjects over the age of sixty, the prevalence of urinary incontinence varies from 15% to 35%; over 70% after the age of 80 in both sexes.

There are more than 75,000 people with stomas, equally distributed between men and women; the condition has a national average incidence of approximately 0.13% of the population. Also the bladder catheterizationand in particular the intermittent one, has an incidence of approximately 0.5% on the Italian population.
Those who are subjected to this practice often suffer from urinary tract infections which can even lead to hospitalization in the most serious cases. Serious numbers aggravated by poor patient information, the lack of targeted institutional communication and the purchasing procedures for devices that are not suitable for providing people with the most appropriate device.

March 2, 2024

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