Do you have problems with your bowels?
Are you looking for support? Do you want to know how to enjoy your life despite of a PEG, feeding tube, central venous catheter and many hours of infusion administration?
Do you have an inflammatory bowel disease and a need for some positive energy and knowledge from other IBD patients?
Do you live in a country without any support groups for people with digestive system insufficiency?
Join us! Together we will try help you!
On a certain winter day in January 2012, I went to a hospital in order to undergo ERCP. A physician suspected that I had a gallstone so I readily agreed to the surgery. That day turned out to be the worst day of my life! Due to the surgeon’s incompetence in performing the surgery many complications occurred: acute pancreatitis, ARDS, bowel perforation, peritonitis, pneumonia with pleural effusion, SEPSIS, 7 surgeries, nerve paralysis and coma.
I was getting weaker with each passing minute. After my family’s intervention and talks with the voivodeship advisor, I was moved to the Pirogow Hospital where the Nutrition Centre is located. They just barely made it in time. It was only there that I met real doctors, among others dr Kunecki, to whom I owe my life. He took care of me with great care and professionalism as he brought me back to health. It turns out that I have had been starved!
Dr Kuniecki was treating all my ailments and, most importantly, he provided me with nutrition. I was fed enterally and parenterally for about 7 months. I stayed in the hospital for 9 months altogether.
I have been parenterally fed for a few years. My illness ruined my everyday life. I was a very active person – both physically and at work. I jogged, played team sports, rode horses, hiked and worked with children. I miss all of it greatly. Unfortunately, I am not able to return to my prior activities as the leg nerves paralysis has left me far less mobile.
I spend the evenings “cooking” my solutions because it is us – the patients – who prepare them for ourselves. After that, I spend 12 hours having my TPN administered. I was once very ashamed of my disability. Then I had met people who were in a similar situation and changed my mind. Thanks to a pump, I am now able to live normally.
Because of my weak muscles and poor physical ability, a rehabilitation is in order. I wanted to go to a sanatorium to ease my symptoms but it did not work out. My husband got a referral but I did not, all because of my parenteral nutrition. I think it is unfair that they don’t want us in the sanatorium. After all, It is not contagious!
A definite advantage of parenteral nutrition is the fact that I am alive. I would have no chances of survival if not for it. The main drawback is a problem with travelling. This year I had to take half a trunk of medication so that I could prepare solutions for myself. It also requires a sterile environment. Problematic but one can bear with it.