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.
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…
remember how happy I was for a say-so on the third degree of disability and for
a nice pension. I was afraid the state would not help me and as a cripple I
would have to move back to my mother‘s. Phew! It turned out well and I got some
money. Unfortunately, not enough to live in Prague. My ability to work is
reduced by 70%. How do I solve it now?
Last time I wrote about the importance of putting
your feet up and taking a break. I wondered what was another crucial thing for
me on my way to health and happiness. And I immediately recognized a job there.
Because either we want or not we spend so much time in it!
I see a lot of interesting and talented people
around me who have a real potential to do or change something. And now I don’t
mean just career potential. Rather, people with a great potential to accomplish
something. Personally, I am very motivated by the stories of my handicapped
colleagues who are not stopped even by the insidious illness and they go on and
My last visits to my gastroenterologist look like I have everything in the norm, nothing hurts me, I should soon get pregnant and … „Are you considering the amputation of your anus? “ Why the hell should I think about it when I’m not having any issues now?
Well my dears, what can I say, it’s not a hit-parade. Especially as I broke my hand before Christmas, the ground was super slippery, but what can be done. I just wanted to get it over with. Continue reading “Ostomate and a broken wrist”
I was sitting at a Nordic meeting of Ostomy Association (NOA) in Finland and was listing to a lecture of local ostomy nurse. She explained how she helped prevent an irritation around the ostomy for her new patient. She just called and asked how he was doing. After a while he confessed that the surrounding of his ostomy is red, began to bleed, something was wrong. She immediately invited him to her office and chose new aids. Issue got resolved there and then. Continue reading “A Proper Ostomy Nurse, Tereza Nagyová”