Interview with Snežana S. Milojevic – Ilco Serbia

At the age of 21, when I was a student at the Belgrade Faculty of Economics, I developed symptoms of ulcerative colitis, such as blood in the stool, disturbed bowel movements, diarrhea, abdominal pain, and a weak appetite. I lost weight, became weak, had a fever… No one in my family has ever had similar symptoms. When I asked the doctor what the cause of the disease was, I was told, “It is anxiety-based“ I lived a relaxed life, became a graduate student in economics, I was member of the folklore dance troupe, always always took care of my diet, I didnt smoke…

The disease was under control for more than a decade thanks to the medication I was taking, but it came back every two years with unpleasant symptoms. The turning point was at the age of 35 when I was doing fertility analyses. When I returned home, I got sick, so I was urgently transported to the KBC “Bežanijska kosa“. I was diagnosed with Crohns disease and it happened that my colon rupturedand it happened that my colon ruptured. Having in mind the possible complications, a team of doctors from the First Surgical Clinic of Serbia were suggested to perform the surgery.

Dr. Ašković, who operated me with the team of doctors (dr. Krivokapić, dr. Ražnatović, dr. Marković), was surprised that I survived such a difficulte surgery because there was a possibility that I would get sepsis due tothe outflow of the contents from the intestines. I was in the hospital for three months, in the period from July to September 1991. During that time, I lost 25 kilograms. They immediately created a stoma ( bag attached on my stomach). When I got out of the bad after fifteen days and looked in the mirror, I only recognized my green eyes. I was shocked and confused because I had never heard of stoma before. It was inceradebly hot , I was wearing elastic stockings againstvaricose veins from ankle to thigh, there were seven other patients in the room… It was all shock for me.

One day, I read an interview with the famous Yugoslavian young actress Merima Isaković, who after a car accident, continued her life in a wheelchair. One of the things she said woke me up, made me conscious and willing to embrace my life. She said that she needed three hours for one step, centimeter by centimeter. I thought – but I am mobile, should I self-pitty?h That is when I realized that people face much worse things in life and continue to live. That newspaper interview gave me the strength to get to know myself. At the same time, it is one of the reasons why I am happy to appear in public and talk about dealing with these problems. If I help at least one person with this story, I have fulfilled my goal.

After a long sick leave, I started working part-time until I retired at the age of 62. Being familiar with existence of Patients with stoma Associations. Seeing that there are associations of patients with stoma, I founded the Association ILCO Serbia in 2002. In the same year, we became members of a large family of the European Ostomy Accosiation, together with other 42 countries.

The main goal of the association is to provide information and education to the patients and their family members before and after surgery. We hold workshops every Wednesday in our premises from 5 pm to 7 pm, and we often do home visits. We are members of the working group at the Institute of Oncology and Radiology of Serbia, and we are on duty in their hall every Wednesday until 12 o’clock. Then we go to the surgery department to see the patients with stoma. I realized that my quality of life is better now. I no longer have diarrhea, stomach aches, blood in the stool…

Regardless of education, age, gender, religion, or the place of living, people always need time to get used to a new way of life. Some people never get used to the stoma. They feel depressed, withdraw into themselves,distance themselves from those who are the closest to them. They fear how will their spouse or partner accept them, as well as colleagues and friends. They also worry about whether they will be able to change their stoma on their own, because people in the third age often have other health problems.

Our physical damage is not immediately visible, but we belong to the third group of the dependents of aids, right behind the dialysis patients and the diabetics. The basic aids are a disk and a bag, a cream, a paste, a spray, and a belt. The costs of the aids are covered by the Republic Health Insurance Fund. All patients use the same backing discs that stick to the surface of the stomach, and the difference is in the bags, depending on the type of stoma. Upon arriving home, these patients are left to fend for themselves if they do not know that there is an association and people with the same difficulty with whom they can consult.

During these 18 years, the association has managed to improve the quality of life of the people with a stoma. It is important that we receive packages of aids every three months. People with a “derived” stoma are not informed which aid from the several types to use, and they usually continue with the first one that they get in the hospital (after the surgery).

The problem is that the declaration of the rights of people with a “derived“ stoma is not respected, but also the fact that we do not have a national day against colon cancer, despite we have been sending a request to the Ministry of Health to adopt it for three years. We have repeatedly written a request to the National Health Insurance Fund to enable all persons with a “derived“ stoma to have the right to receive an abdominal elastic belt with a hole for a stoma immediately after the operation, in order not to get a hernia. For now, they have the right only if the surgeon assesses that the patient’s abdominal muscles are weak.