Social media can serve as a showcase for almost anything. From social causes to medical situations. Thanks to it, you will be able to discover the journey of a cancer patient, the reality of rare diseases or even the daily life of people with ostomies. It is this visibility that pushed Patricia Veiga, who belongs to the latter group, to open a profile on Instagram and show what it’s like to live with an ostomy. This is an opening (stoma) in the abdomen to divert the flow of stool and urine outward into a bag.
Veiga has had a permanent ostomy for five years and four years ago she created the account @Ostobag to show her reality and help other patients like her. The content he uploads to the platform ranges from photos in which he shows the bag, “to end the taboo”, to videos in which he teaches how to change it. For her, the stoma did not pose a problem, quite the contrary: “It gave me quality of life”. However, he understands that for many people it is a complicated situation and that it is difficult for them to adapt.
His story begins at the age of 9 when he was diagnosed with Crohn’s disease. At the age of 21, this pathology caused perforation of the intestine and he entered the operating room. When he left, we had to give him a stoma, the first, with which he lived for almost three years. After this stage, her doctor offers her the possibility of reversing the stoma and she accepts. He goes a decade without the bag, but after that time, he talks to his specialist about getting it back. Due to the surgeries he has undergone throughout his life for his condition, he also suffers from short bowel syndrome. This complication forced him to always have a bathroom nearby: “I had to go there on average 20 times a day”account.
Veiga herself highlights her attitude and adaptability as two of her best virtues and it’s something she shows off on her Instagram profile. The Valencian wants people to see this You can lead a “perfectly normal” life with an ostomy. “I haven’t stopped traveling or making plans,” he says, smiling. María Jesús Bernarte, president of the Spanish Society of Nurses Specialized in Stomach Therapy (SEDE), believes that work like hers is very necessary to send this message and help other patients whose situation could be worse .
The nurse explains that, on a social level, “it is frowned upon to talk about stools and urine.” This means that many patients do not adapt well and even some isolate themselves because they are afraid and embarrassed that their stoma may leak or that people will notice that they are wearing the bag and may observe them. “This can be a delicate subject,” explains the content creator.
During these four years with @Ostobag, he has seen how much his followers have grown and how his work can help others. In fact, she is the most recognized ostomy content creator in the Spanish language. “It’s amazing to see how far he’s come.”. Her followers, who often comment on her posts encouraging or thanking her for her work, show her that what she does has meaning and serves a purpose. She also knows she’s lucky because she hardly gets any negative comments and when they do come, they’re “very isolated.”
Patricia Veiga poses in Valencia after the interview.
Nurse and patient
Veiga, in addition to being a patient, is a nurse at La Fe Hospital in Valencia and says her situation has also influenced the way she works. “I care more about the process because I’m also on the other side.”. He never considered leaving his job and his superiors adapted the position so that he could do it without problems.
In addition to ostomy, short bowel syndrome causes loss of many nutrients and need to give intravenous drips through a catheter in the arm to stay hydrated. Until a few months ago, I also needed parenteral (intravenous) nutrition for the same reason. All this limits her and does not allow her, for example, to carry out the usual rotations of her profession.
There is still more to learn
The situation of people with ostomies is largely unknown in society. This is why Veiga believes that the normalization of situations like his It’s not a question of consciousness, but of knowledge. “That’s why I’m here,” he comments with a laugh, claiming his profile on social networks.
To keep moving forward, last week, the documentary Being and living with an ostomatewith Valencian. Through its history, it aims to give visibility to the reality of hundreds of thousands of people. Bernarte regrets that monitoring these patients is a difficult task because there is no official record. In 2018, the White paper on ostomiesclaimed that in Spain there were 70,000 patients and that 16,000 more were diagnosed each year. According to these calculations, there are currently around 200,000said the president of the SEDE.
One of the main struggles of societies related to ostomates, such as SEDE or the Federation of Ostomy Associations of Spain, is the availability of suitable toilets for patients. At present, There are only 317 available nationwidemost in places such as public hospitals and airports, Veiga and Bernarte say. The president of SEDE believes that a regulation is “necessary” which requires these adaptations to be included in buildings so that these patients can empty and change their bags comfortably and safely. “There is still a long way to go,” laments the specialist.
