Ehlers-Danlos Syndrome & CRC

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chrisca
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Joined: Wed Dec 07, 2011 10:35 pm
Location: Portland, Oregon

Ehlers-Danlos Syndrome & CRC

Postby chrisca » Wed Jan 09, 2019 5:58 pm

I've been looking into some symptoms I've been experiencing for many years, and they are pointing to a genetic condition called Ehlers-Danlos syndrome. Long story short, there's a very interesting presentation here: https://www.ehlers-danlos.com/2014-phys ... ollins.pdf
There are lots of GI implications for people with the disease. While it doesn't mention colorectal cancer, there are some possible links related to increased gut permeability and more trauma to the gut as a result. If you have symptoms mentioned in the presentation, it doesn't hurt to get a genetic test to see if it's an issue in your situation. I'm getting tested soon.

The disease affects the body's formation of collagen. There are several subtypes. They can include joint hypermobility, bruising, fragile skin, gum disease, food allergies, gluten intolerance, GERD, IBD, Crohn's, etc. Worth a discussion with your doctor if you have any of these. Bowel perforation during colonoscopy is specifically mentioned.
Male, false negative colonoscopy age 48
DX: 12/2010 rectal cancer age 51
Stage T3N0M0 2 cm from anal verge
neoadjuvant rad/chemo Xeloda
Rectal resection (open surgery) straight anastomosis
Xeloda round 2
ileostomy reversal 11/2011
Successful adhesion X-lap 8/2013
Ongoing LAR syndrome but NED 7 years

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