Contents
Marek Lichota, president of the Appetite for Life Association, has been on parenteral nutrition for 11 years. A rubber tube is permanently attached to his chest, through which he mostly nourishes himself. He attaches a bag of nutritional mixture every evening and “eats” the nutrients for 14 hours. We talk with Marek about whether and how much parenteral nutrition is making life difficult.
As part of our campaign “We choose the truth”, we recall selected texts from TvoiLokona that influenced the reality around us. In the coming months, more articles from the series will be presented on the TvoiLokony home page. This text originally appeared on Onet in December 2019.
- Marek Lichota suffers from Crohn’s disease. As a result of an exacerbation of his disease, he stayed in the hospital for several months. He lost almost 50 kg and barely survived
- Marek was saved by parenteral nutrition. He has been living this way for 11 years. The beginnings were very difficult and the worst part was the lack of mobility
- Marek decided to return to “normal” life. Thanks to his determination, he regained mobility. He travels, works and looks after children. It is an inspiration for several hundred people who, like him, “eat through a tube” in the chest
- You can find more such stories on the TvoiLokony home page
80cm beautiful
Marek Lichota has been suffering from Crohn’s disease since 2002. In the first year of college, without feeling anything wrong, he saw a doctor with abdominal pain and diarrhea. He left the office with a diagnosis and information that the disease would accompany him for the rest of his life. Initially, it didn’t really get through to him. The disease was smooth and you could say it was not a problem.
– Unfortunately, these were only appearances. Apart from one surgical intervention in 2005, my life was fairly normal. I got married and became the father of a wonderful daughter Julia. Unexpectedly, in 2008, the disease got worse – says Lichota.
There was a massive intestinal haemorrhageand ended up in an operating room. Within a short period of time, he had three operations, during which successive sections of his intestine were excised. Marek survived clinical death and was infected with sepsis. Several times it seemed as if he would not survive another day. Thanks to the determination of the doctors, the will to fight and the support of his family, he returned home.
– Unfortunately, as a result of an operation with more than 8 m of the intestine, I have about 80 cm left. I had a stoma. The body was exhausted. When I was 187 cm tall, I weighed less than 48 kg. I was a shadow of a man. So what if I ate, if my body was unable to absorb the nutrients. Due to the lack of proper nutritional support in hospital and subsequent operations, I was bedridden for three months, as a result of which I lost most of my muscles and had to learn to walk again.
«The worst thing is the lack of mobility»
Before leaving the hospital, Marek switched to the so-called “Parenteral nutrition” and has been feeding in this way for 11 years. Parenteral nutrition is based on the fact that a special catheter is brought into the vena cava through which the nutritional mixture is administered. The drip oozes for about 14-18 hours a day. During this time, you have to be connected to it all the time.
– The beginnings were definitely not the easiest ones. The sad truth is that there are still doctors in Poland who discharge patients with a very short bowel home without providing them with nutritional support outside the hospital. They doom them to further destruction and, consequently, death. Fortunately, in my case, no one thought about doing it. I waited a month for a place in a specialist parenteral nutrition center.
See also: How to feed patients with Crohn’s disease and other inflammatory bowel diseases
Parenteral nutrition is a life-saving procedure. After leaving the hospital, Marek moved to a specialist center. Currently, there are 14 of them in Poland. They underwent training there, thanks to which he was able to use parenteral nutrition at home.
– I learned the procedures related to the care of the catheter, the observance of aseptic rules of connecting and disconnecting nutritional preparations and changing the dressings. At the same time, I was recovering from previous operations, I was struggling with pain and lack of mobility. It was the worst. Before all this, I was an active man, I worked a lot. I also had a two-year-old daughter whom I wanted to spend time with. It was not easy – he says.
Light in the tunnel
Marek returned home, but his life revolved around the drip stand. Each bag change had to take place under certain conditions, routine could make something go wrong and become infected. For a year he learned to accept the situation in which he found himself. His everyday life was more like vegetation than real life. After a year and a half, a light appeared in the tunnel.
– Another operation that was to restore the continuity of my intestines was successful. It gave me extra motivation to fight to get my life back. In six months, I was able to gain 10 kg. From then on, I decided to try to live “normally” as much as possible so that parenteral nutrition would not restrict my plans and disrupt my family’s life. In addition to parenteral nutrition, I also eat like any other human being – orally. Except that I have to support myself, because not many nutrients from this normal diet are absorbed into the body – explains Marek.
The biggest problem was the lack of mobility. Being attached to the drip stand caused many inconveniences. Every threshold in the house and narrow passage were obstacles. The drip also prevented normal play with the daughter, meeting friends in the city and other activities that are the norm for a healthy person. After many internet searches, Marek found portable pumps for parenteral nutrition. They look like a backpack, guarantee a constant supply of preparations regardless of the position and place of stay, are more precise and most importantly – they ensure mobility.
– It was a real breakthrough. Portable pumps are not reimbursed, I had to buy one myself. I don’t regret a single zloty. Thanks to her, I was able to return to normal life. I pick up my children from school – during my illness I became a father for the second time, I work, work in the organization “Appetite for Life”, I travel. I no longer have the feeling that my family is losing something because of my illness – says Marek.
A disease that cannot be seen
Looking at Marek, it is hard to notice at first glance that he is sick. As he says about himself, he is a nearly 40-year-old man with a loving family and a positive attitude towards life, and his illness does not define him. It is invisible, but that does not mean it is not there.
– Complications caused by Crohn’s disease and performed surgeries led to disability and failure of some organs, especially the digestive system. It is difficult to talk about intestinal problems in society. They often smell bad, force you to go to the toilet, which makes them taboo.
See also: Reimbursement not benefiting from patients. The result is malnutrition and exhaustion of the body
Parenteral nutrition, while it may seem like “salvation” in Mark’s case, is not quite that good. Although it provides the nutrients necessary for life and functioning, it significantly strains the liver and kidneys, and in the future may lead to failure of these organs. At the moment, however, there is no more effective therapy.
– Living on nutrition often requires a lot of effort and organization from me and my family. It is often costly with pain and discomfort associated with the symptoms of the accompanying Crohn’s disease. Traveling in my state is not easy, but neither is it impossible. It is true that I take more bags than normal for a few-day trip, I often also have to complete some formalities related to the transport of medical equipment, but each successful trip gives a lot of satisfaction – says Marek.
Marek argues that parenteral nutrition does not have to be the end of the world. When he was learning to live, there was little information about “living on nutrition”. He read about foreign patients who showed what their lives are like. Inspired, he founded the Association “Appetite for Life”, which brings together not only people who are on parenteral nutrition, but also their families and relatives.
– We share information, patient stories and help people who are just starting their adventure with parenteral nutrition. Our motto is “because in Appetite – we love life” – ends Marek.
You can read more about the association’s activities on the website apetytnazycie.org and on the Facebook profile.
The editorial board recommends:
- How to feed the patient in the period before and after surgery?
- Cancer patients in Poland still with insufficient medical nutrition. «Time to catch up with Europe»
- One in five cancer patients dies of cachexia
You haven’t been able to find the cause of your ailments for a long time? Do you want to tell us your story or draw attention to a common health problem? Write to the address [email protected] #Together we can do more
The content of the medTvoiLokony website is intended to improve, not replace, the contact between the Website User and their doctor. The website is intended for informational and educational purposes only. Before following the specialist knowledge, in particular medical advice, contained on our Website, you must consult a doctor. The Administrator does not bear any consequences resulting from the use of information contained on the Website. Do you need a medical consultation or an e-prescription? Go to halodoctor.pl, where you will get online help – quickly, safely and without leaving your home.