The story of Bastian Krosche, a German journalist who lives with a Percutaneous Endoscopic Gastrostomy (PEG), highlights the profound impact of this medical intervention. His personal journey and advocacy work in raising PEG awareness and fostering community support exemplify the resilience and adaptability of those navigating life with feeding tubes. Read about Bastian’s personal experience below, where he writes about what it is like to live with a feeding tube due to spinal muscular atrophy, a condition he was diagnosed with as a baby.
A PEG is the most commonly used method for long-term enteral nutrition, aiding millions of people each year in receiving the essential nutrition and fluids they need to survive. A PEG is a medical procedure that involves inserting a tube directly into the stomach through the abdominal wall. The feeding tube facilitates the direct delivery of nutrition, fluids, and medications to individuals who are unable to eat or swallow safely due to various medical conditions.
If I Didn’t Have a Feeding Tube, I Would Die
Helping aids play a central role in my everyday life. Without them and my assistants, I would be lost. Because of my illness, I can no longer do anything on my own apart from speaking and, on good days, operating my power wheelchair and computer. But even that is only possible with aids. My muscles are too weak to move, and my body is a helpless shell.
I live with spinal muscular atrophy, a progressive muscle condition that weakens all the muscles in my body. Put simply, my brain doesn’t send enough signals to my muscles, and so they wither away. You can imagine it as if a motivated group of construction workers started work every morning but there was no foreman to tell them what to do. Over time, fewer and fewer construction workers will show up for work in the morning because they have nothing to do anyway.
Spinal muscular atrophy affects all the muscles in the body. The obvious ones, such as those in the arms and legs that you need to move, but also the ones that don’t immediately spring to mind. Our heart, for example, is a muscle. There are also a large number of muscles that are needed for breathing. Another bodily function that would not work without muscles involves our food intake. Up to 100 muscles are involved in swallowing alone. It is therefore not surprising that the most important of the above-mentioned aids in my everyday life is not the power wheelchair or the patient hoist. Of course, my daily life would be more complicated without them, but at least I could survive without them. However, if I didn’t have a feeding tube, I would die. I would simply starve to death as I wouldn’t be able to get enough food and water.
Questions Asked When First Receiving a PEG
The small tube that leads through my abdominal wall directly into my stomach may be quite inconspicuous, but it plays a fundamental role in my life. I’m not alone in needing this type of aid. The insertion of a permanent feeding tube, a so-called PEG, is a common medical procedure in Germany. It’s not surprising when you think about it. After all, there are well over 300 medical conditions that can have a negative impact on our ability to eat. These range from purely physical diagnoses, such as various neurological diseases and their consequences, to tumours in the mouth or other parts of the digestive system, to psychological causes, such as acute eating disorders. In addition, the placement of a PEG is relatively simple and can solve or circumvent the existing problem of imminent nutrient and/or water deficiency.
When I had my first PEG over 20 years ago, I didn’t really think about any of this. I was much more interested in questions such as ‘Will it hurt?’, ‘Is it forever?’ and ‘How will it affect my everyday life?’—questions to which I now know the answers to, which are probably asked by anyone confronting this topic for the first time. I was shocked when first I realised, around two and a half years ago, that even two decades later after I first got a PEG, there are only a handful of answers to these questions. Of course, in today’s information age, you can find numerous explanations of how a PEG is applied and how it works. However, this information usually comes from professionals, such as doctors or specialised nurses. Rarely do reports come from people who actually live with a feeding tube themselves.
Finding Meaningful Work Through PEG
I realised during a project for one of my clients that such authentic information is needed. As a journalist, I am always providing different types of content for my clients. At the time, I had been asked to write down some information about my life with spinal muscular atrophy for a portal for those affected. At the end of the year, we discussed the website traffic for the various articles on the portal. It turned out that my articles about living with a PEG had received the most clicks by far.
Until that point, the job had been just like any other in my day-to-day work. But the number of people reading my articles got me thinking, so I delved deeper into the subject. After a short period of research, I realised there were in fact people who occasionally reported on their own life experiences with a feeding tube. However, this was only in the form of spotlight articles. In addition, there were only comments from medical professionals, i.e., people who have an external perspective on the topic. So, I thought to myself: ‘Bastian, you’re a journalist, and there’s an extremely important need for information here. Do your job!’
It is clear by now that many people could talk about their experiences with a feeding tube. However, the sad truth is these people often have other things going on in their lives than sharing their knowledge with others. Or they simply lack the relevant expertise. I, on the other hand, studied media and communication sciences and have been earning a living as a journalist for years. What’s more, I can pass on my own authentic experiences as well.
Feeding Tube Awareness and Building PEG Community
To be able to do this systematically, I started my blog “Leben mit PEG” (Life with PEG) at the end of February 2022. Every week, I write about a very specific aspect of everyday life with PEG. As I come from Germany, I write this blog in German. With over 43,000 readers, it has now become the leading site on the subject of feeding tubes in the German-speaking market.
On the occasion of Feeding Tube Awareness Week 2024, I will start publishing my blog in English too, under the name “Life with PEG”. After all, this topic is not only relevant in German-speaking countries. Millions of people around the world have now survived the consequences of an illness thanks to a feeding tube.
As the history of my blog shows, there is still a lot of educational work to be done around PEG. The International Feeding Tube Awareness Week intends to contribute to this cause, as I do. It has been taking place in the first week of February since 2010. During this time, people with a feeding tube, and their relatives, are encouraged to share their experiences of everyday life with a feeding tube and to publicise their experiences and challenges so people who are dependent on artificial feeding can see they are not alone. The aim is also to build awareness amongst those who do not (currently) need a feeding tube, teaching them that having a PEG is not a bad thing. On the contrary, it is a fantastic medical aid. Eating via a feeding tube is just another form of diet; there are a lot of people using them these days.
Making a Personal Impact for PEG Development
Manufacturers of tube nutrition and the necessary accessories have now also realised how important their products are. In the past, products that were brought into the market showed a lack of understanding of the target markets and consumer’s needs. Patients then had to cope with what they provided, regardless of whether it made sense or not. At that time, they had no other choice, the products had to be used. Fortunately, things are different today as there is more competition on the market, leading to product development.
This change may be due to globalisation. Or it may be due to the fact that companies have recognised the purchasing power of tube nutrition and equipment. Patients have the desire to decide what to use in their daily lives with PEG. They are not only patients determined by others but self-determined consumers. Naturally, it is important to win over these consumers in favour of the company and its products. The products must therefore meet the needs of the targeted group.
In order to develop an understanding of the consumers’ needs, it is crucial to have a dialogue with people living with PEG. In today’s digital age, this is no longer limited to face-to-face meetings but can also take place online. M3 Global Research is a market leader in healthcare market research and is currently looking for people who live with a PEG themselves or whose relatives do. They regularly survey and interview people about their everyday lives, giving them easy access to a safe space to share their experiences living with PEG. This will not only provide important insights into the needs of the PEG community but will also create an opportunity to share experiences with each other.
If you are living with PEG, you can become an M3 member and get access to market research studies on this topic and get compensated for your time, while helping the research forward. Register for free or log in to your account.
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