Ostomy with Ehlers-Danlos (eds)
What is Ehlers-Danlos Syndrome?
EDS is a connective tissue disorder, and connective tissues are all over your body so it can affect any part of your body. There are 13 different types. I have the most common type, which is the hypermobility type, also known as Type 3. It mainly affects my joints and my digestive system. My muscles don't really have the support that they would have if I didn't have EDS you can have many other conditions from which i have .
many other conditions from Eds which I also have.
What Is a ostomy you may ask?
also known as a stoma, means the same thing as a ostomy. It's part of the large or small intestine that usually sticks out of your abdominal wall so when you eat and have to go to the toilet like a normal person, instead of having to go to the toilet, my bodies automatically empties into a bag There are different types of ostomies, I have an ileostomy so its my small intestine that sticks out of my abdominal wall, it doesnt hurt unless you have skin issues around the it surroundingthr skin or a hernia, or blockages from foods unable to break down an digestive properly which are also common with ostomies. When you have no colon (large intestine) its harder to stay hydrated the large colon absorbs fluids so many of us with ostomies have to get IV hydration when needed, its even more complicated when you have other health issues that cause same issues, so we have to be careful, mindful an listen to our bodies. #chronicillness #ehlersdanlossyndrome #ostomy #nocolonstillrollin
Managing life with both Ehlers-Danlos Syndrome (EDS) and an ileostomy can be a unique journey filled with challenges and learning moments. From my personal experience, one of the toughest aspects is maintaining hydration. Since EDS affects connective tissues throughout the body, including the digestive system, and the ileostomy bypasses the colon—which typically reabsorbs fluids—it's crucial to be vigilant about fluid intake. I’ve had times where I needed IV hydration due to increased fluid loss, something others with ostomies might also face, especially when compounded by EDS-related digestive complications. Skin care around the stoma is another critical area. EDS often makes skin more fragile, which means the skin surrounding the stoma can be prone to irritation or injury. I found that using gentle, hypoallergenic products and protecting the area from moisture helps reduce discomfort and potential infections. It's also important to monitor for any signs of hernias or blockages—common issues that can cause pain or other complications. For me, avoiding certain hard-to-digest foods has been essential to prevent blockages, alongside working closely with my healthcare team. Living with an ileostomy and EDS also calls for mindful body awareness. Both conditions require listening carefully to what your body is telling you, recognizing early signs of trouble, and taking timely actions. Support groups and online communities dedicated to chronic illness and ostomy care have been invaluable to me—they offer not only practical advice but emotional support from people who truly understand. Ultimately, while having an ostomy with Ehlers-Danlos Syndrome presents its difficulties, it’s about adapting through education, self-care, and the right medical support. Sharing these experiences openly helps others navigating similar paths feel less alone and more empowered to manage their health effectively.