Category: embrace the brace

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I learned something very important this week🤩... accessible nature is a thing! 🌲🍃#ehlersdanlos #fragilebutunbreakable #edsawarenessmonth #accesibletravel #accesiblenature #getoutside #embracethebrace

Raise your hand if you’ve ever heard of a cecostomy? When most people think ostomy they think of a procedure that bypasses the colon completely and empties into an external bag. Many people with EDS struggle with a range of motility disorders meaning that parts of the digestive tract fail to contract fast enough. This can cause chronic nausea, distention, pain, vomiting and/ or malnutrition. I’m here to tell you that a cecostomy is a non traditional- little known option for treating colonic inertia (dysmotility of the colon/ constipation caused by lack of muscle movement) when medications are no longer an option... It’s simply a pathway into the top end of the colon that can be regularly used as a flush for fluids & medications. I was lucky enough to have mine done with the MACE procedure which means once things are healed the tube will come out and no one will even know I have a secrete internal stoma. I’m choosing to share my experience to educate others faced with similar situations and may not have been presented with this option... I wasn’t fully informed until I was considered to have neurological involved and even then had to seek out the surgeon myself. The scariest part about going through with the surgery was not knowing if/ how much it would work because there’s literally no data and no one to talk to about using it with EDS or global motility disorders 😱It’s been 10 days filled with ups and downs and my guts have barely woken up from surgery, but I think I can still conclude it will at least work enough to stabilize me ...which in the scheme of things is a huge accomplishment 🤩I’ll be making an informational video on my YouTube about the process for getting and using a cecostomy/ mace, how it helps, and how it doesn’t help... so coming soon the most fancy alternative way to get pooping 💩 #ehlersdanlos #edsawareness #ehlersdanlossyndrome #colonicinertia #dysmotility #sibo #gastroparesis #gpact #girlswithguts #ulcerativecolitis #mastcellactivationdisorder #cecostomy #ostomyawareness

Whoa being hospitalized with a roof top garden was the first time I haven’t felt trapped ... this should be a must for everyone! I have so many thoughts about this latest adventure getting surgery at a children’s hospital. I’m at peace knowing that medicine is at least working as it should for those most vulnerable. However there’s no reason to think that once someone hits the magical age of 18 they stop benefiting from an aesthetically healing atmosphere,having access to nature + natural light, and attempts at making something miserable just a little bit more fun! #chronicillness #ehlersdanlos #nature #holistichealing #holistichealth #holisticmedicine #getoutside

Feelings on trying to prioritize medical care with EDS...everything is breaking, but I’ve accepted trying to solve everything at once gets to nowhere. & good life advice in general ✌️💕✨ a reminder to slow down in this modern world racing to nowhere #ehlersdanlos #mindfulness #beherenow

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