Living with Ostomy: Personal Stories and Experiences

Although ostomy care has improved significantly in the past decades, some people with ostomy, does still not have access to basic rights, that enable them to live a self-determined and independent life – even in developed countries.

Below patients from around the world share their experiences of being diagnosed and living with ostomy, to ensure the patient voice is heard in efforts to improve ostomy information and care.

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If you want to share your own story, you can share it with us here and we’ll do our best to publish it. Please let us know if you’d like to remain anonymous.

Arta Uka’s Story, Kosovo

My mother have had colon cancer and the surgery ended with an ostomy. Having unrestricted access to a variety of affordable ostomy products is at the top of the list of challenges in my country. Living with a stoma presents an ongoing financial burden that is insupportable for many in Kosovo, where more than 30% of the population lives under the poverty line of €1,3 per day while disposable ostomy bags cost around €3-7 each and are designed to be used for only a couple of days at most, sometimes even just for few hours. The range of products offered in the market is very limited and expensive and often of a very poor quality which often causes skin irritation and gets bloated very fast.

Andrzej’s Story, Poland

In Poland, the situation of ostomates has been stagnating for many years. The refund limits for ostomy appliances have been the same for almost 20 years, and the inflation itself consumed about half of the reimbursement. Only few ostomates can afford buying appliances at full prices. Currently, the reimbursement covers only about 30 one-piece pouches of an average quality per month or less if one needs some additional cosmetics or accessories.

There are also no commonly available stoma clinics, and the nursing care of immobile patients in their homes is practically non-existent. We also receive alarming signals from patients about the deteriorating inpatient and post-hospital care. And the COVID-19 pandemic has worsen these problems, especially in terms of educating new patients and their families.

Myriams’s Story, France

In France, we are lucky to have an excellent social security system that covers most of the medical expenses (hospitalization, nursing care, ostomy appliances, medical transport,…), whether we are French citizens, refugees or awaiting naturalization. In spite of this, there are significant gaps in relation to the Charter of Ostomates’ Rights and reality.

In oncology, the care pathway is individualised and decisions are taken in multidisciplinary consultation. For other causes leading to the creation of an ostomy, this is not the case. Medical deserts and urban/rural disparities in the supply of care are an obstacle to efficient city-hospital coordination. Few trained stoma nurses and few informed and trained private homecare nurses mean that the return home is often chaotic. Primary health care professionals (doctors, pharmacists, etc.) are not trained to take care of ostomate patients either.

Also, health establishments do not open their doors to patients’ associations in many territories. Hence the importance of making the patient experience known and recognised!

Maybin’s story, Zambia

In our culture matters of hygiene are very important and people do not talk about toilet issues, as it is considered a taboo. My mother found it very difficult to nurse a male child, so I had to learn to take care of myself at an early age. I stopped going to school for almost a year because of stigma and fear of bag smelling and leaking. I hardly went out for fear of people looking at my colostomy bag. Going to school was a challenge as no one at my school understood my condition. My classmates would often not sit with me because the bag would sometimes smell. The ablution block in my public school was never designed for changing of colostomy bags or any other disability.

After one year my stoma reversed, and my life slowly started going back to normal, I must admit having a stoma for almost two years was a challenge, but I believe thing would have been different if I was prepared mentally before going through surgery and if we had Ostomy supplies in my country. Most importantly, we need more information on how to live life with a colostomy. Public awareness about how it is living with a stoma is needed, to increase peoples understanding of the condition.

Daniels’s story, Zambia

I got my stoma about a year and half ago and since then my life has changed dramatically. Being young and just having entered university, I had to deal with the challenges of finding colostomy bags in a quality, that we’re secure enough, to enable me to study. In Zambia quality Ostomy supplies are not only hard to find but also very expensive. Before I encountered Stomacare Support Zambia I would use square plastic things which are made to look like colostomy bags. Unfortunately, there is little or no information at all from government hospitals on how to live with a stoma.

The other thing I had to deal with are issues of stigma as the ostomy condition is not known to many people. I could hardly go out for fear of the bag smelling. Most people look at me as if I’m a wandering disease, probably, due to lack of information on what causes a person to have a stoma. I believe that people need to be educated more on this condition and life being an ostomate. I believe life can be better if we have access to quality supplies. Most of us suffer in silence as and do not speak up in fear of stigma.

Anonymous woman, Zambia

I became an ostomate one month after the caesarean session I had with my first-born child. I developed abdominal pains and when I went to the hospital the doctors diagnosed me with gastritis and send me home with some medication to cure it.

However, my condition got worse, and I was hospitalized. My stomach started swelling and it took a long time for the doctors and nurses to identify the problem despite an ultra-scan. Later, I was consulted by a senior doctor who interpreted the ultra-scan and found out I had some adhesions, whereafter I was prepared for operation and an anastomosis was performed. The operation was unsuccessful and resulted in an ileostomy.

As every ostomate, I’m dependent on colostomy bags, which in Zambia is difficult to access. The doctor who operated me, had one colostomy bag in his office, which was kept as a teaching aid for students, who came to do their attachments at the hospital. I was told that it was reusable therefore, I was supposed to wash it when used and put it in shade for a dry up.