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Diet

I started with stomach problems from a young age, however over the years my issues have developed into extreme pain and nausea. I lost a lot of weight, and even had to choose private healthcare to give me a headstart for a diagnosis as the NHS was not being the best at that time.

Ayeesha

 

Sally talks about diet issues and EDS and HSD

Living with Ehlers-Danlos syndrome (EDS) can affect lots of parts of your life, including your relationship with food. Before I was diagnosed, I never really thought about how much what I ate could affect how I felt. But for many young people with EDS, eating can sometimes be more complicated than just feeling hungry and having a meal.

Some people with EDS experience digestive issues like nausea, reflux, bloating, constipation or stomach pain. These symptoms can make eating difficult or uncomfortable, and sometimes it can be hard to know which foods might trigger problems. It can feel frustrating when your friends can eat whatever they like while you’re trying to work out what helps your body feel its best.

EDS can also affect energy levels. When you’re already dealing with fatigue, pain or dizziness, making balanced food choices isn’t always easy. On bad days, preparing meals can feel like a huge task. That’s why having easy snacks and simple meals available can be really helpful.

There is no special diet that works for everyone with EDS. What helps one person might not help another. Some people find that keeping a food diary helps them notice patterns, while others work with healthcare professionals such as dietitians to understand their nutritional needs. The most important thing is making sure you’re getting enough nutrients and not cutting out foods without proper advice.

It can also be difficult if comments about weight, food or appearance affect your confidence. Remember that every body is different, and having EDS means your body may face challenges that other people don’t see. Being healthy isn’t about looking a certain way—it’s about finding what helps you feel your best. Listening to your body, asking for support when you need it, and being kind to yourself are all important parts of managing life with EDS.

 

Sometimes, in rarer circumstances, people may have to have a temporary or longer term feeding tube fitted.

What are feeding tubes?

How it works

Tube feeding is a medical method used to provide nutrition to individuals who are unable to eat by mouth. In this process, a tube is inserted directly into the stomach or intestines, allowing for the delivery of specially formulated liquid food. This liquid food contains all the essential nutrients, including calories, vitamins, and minerals, necessary to maintain health and well-being. By using tube feeding, healthcare providers can ensure that patients receive adequate nutrition to support their body’s needs, promoting strength and overall health even when normal eating isn’t possible.

Why Someone May Need It

People may need tube feeding for many reasons, such as:

  • Difficulty swallowing due to an injury or illness
  • Digestive problems that make it hard to eat or absorb nutrients
  • Conditions like cerebral palsy or stroke that affect the muscles used for eating
  • Severe malnutrition or significant weight loss due to a chronic illness

Enteral vs. Parenteral Nutrition

There are two main types of nutrition support: enteral and parenteral.

  • Enteral Nutrition:This is when food is given directly into the stomach or intestines using a tube. It’s usually preferred because it uses the digestive system, which is the natural way to absorb nutrients.
  • Parenteral Nutrition:This is used when the digestive system isn’t working properly. Nutrients are given directly into the bloodstream through a vein (intravenously or IV). This method is more complex and is used only when enteral feeding isn’t possible.

Different Types of Tubes

There are several types of feeding tubes:

  • NG-Tube (Nasogastric Tube):This tube goes in through the nose, down the throat and into the stomach. This tube is used when the stomach can’t tolerate food or needs to be bypassed, often in cases of severe reflux or gastroparesis (slow stomach emptying). This is usually a shorter-term solution, often used for people who need feeding support or to remove stomach contents and can be placed at the bedside.
  • NJ-Tube (Nasojejunal Tube):This tube is like an NG tube but goes further, passing the stomach and into the small intestine (jejunum). This tube is used when the stomach can’t tolerate food or needs to be bypassed, often in cases of severe reflux or gastroparesis (slow stomach emptying). This must be placed in endoscopy or invasive radiology.
  • PEG tube (Percutaneous Endoscopic Gastrostomy Tube): This tube is placed directly into the stomach through a small incision in the abdomen, usually in endoscopy or radiology. This tube is used for long-term feeding, often for people who have chronic conditions that prevent them from eating normally.
  • PEG–J tube (Percutaneous Endoscopic Gastrostomy-Jejunostomy Tube): This tube starts as a PEG tube but includes an extension that goes beyond the stomach and into the small intestine (jejunum), again usually placed in endoscopy or radiology. It allows access to the stomach for venting or draining and provides a means to feed into the small
  • However, these tubes can be more temperamental as the jejunal extension may occasionally flip back into the stomach.
  • J-Tube (Jejunostomy Tube):This tube is placed into the small intestine (jejunum) through the abdomen. It’s used as a long-term measure when the stomach needs to be bypassed, in cases such as severe gastric/pancreatic disorders, or when gastric feed is not possible. A J-tube placement requires surgery and is more complex than a G-tube because it requires accessing the small intestine, involves more precision, and has higher risks of complications.
  • Central Line:A central line is a long, thin tube placed into a large vein near the heart. This is used for parenteral nutrition, where nutrients are given directly into the bloodstream. It’s used when the digestive system can’t handle food at all, often due to severe digestive issues or bowel surgery. This is usually placed in invasive radiology.

Millie's Top Tips for living with a feeding tube

  1. Seek Support; Connect with support groups or online communities to share experiences and gain insights, communicate openly with friends and family about how you feel and don’t hesitate to seek help from healthcare professionals when needed.
  2. Embrace the Positive: Understand that having a feeding tube is a significant adjustment, but many people live full, active lives with one. For most, it restores a quality of life that would otherwise be unattainable.
  3. Stay Informed: Learn about your specific type of feeding tube, including its use, care requirements, and how to order supplies. It’s also vital to know how to manage common issues and who to contact for help or advice.
  4. Maintain Hygiene: Always keep the feeding tube and insertion site clean, wash your hands thoroughly before handling the tube and use techniques taught by medical professionals when handling feeds, water, or medications.
  5. Be Prepared: Always carry extra supplies, such as syringes and tape, when you go out. Having the necessary items on hand ensures you can handle any issues that arise with your tube.