Ehlers-Danlos Syndrome & CRC

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
chrisca
Posts: 238
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

User avatar
CRguy
Posts: 9786
Joined: Sun Feb 10, 2008 6:00 pm

Re: Ehlers-Danlos Syndrome & CRC

Postby CRguy » Sat Jan 19, 2019 12:24 pm

bumping up here chrisca

This info is a very good lesson for folks to always been on the lookout for factors which could impact their own situations.

just FYI it is also a well known, albeit rare, disorder which affects felines !

I think I have only ever seen one cat in about 40 years
BUTT still ... it is out there.

Best wishes to you
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

stu
Posts: 1028
Joined: Sat Aug 17, 2013 5:46 pm

Re: Ehlers-Danlos Syndrome & CRC

Postby stu » Sat Jan 19, 2019 12:43 pm

My dad and I have the Hypermobility Syndrome. I was pain free up until I had children . I was a good model for hyperextending elbow joints when I did my training .
However pregnancy was tough . Every cloud has a silver lining as I had rapid labours . Apparently part of the course .
I can’t do the exercises I would like to do but keep very fit by staying within my range of movement . Walking longer distances took ages to build up a tolerance to without pain .
But I do everything but grade my activity with lots of rest periods and frequently change positions .
I notice my digestive system gets affected .
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

rp1954
Posts: 1436
Joined: Mon Jun 13, 2011 1:13 am

Re: Ehlers-Danlos Syndrome & CRC

Postby rp1954 » Sat Jan 19, 2019 3:40 pm

Thanks for that link on the Ehlers-Danlos version of malabsorption and gut problems. The slide show had a lot of overlap with the naturopathic - leaky gut books with some elaborations.

One whole area seemed to be missing in the slide show: major digestive factors like stomach acid, pepsin, bile, and pancreatic enzymes - along with their recovery or replacement. Without digestion, anything and everything can go wrong; there are many on-ramps for the digestive highway to hell. Achlorhydria or hypochlorhydria with concurrent or subsequent small bowel bacterial overgrowth and multiple digestive organ dysfunction seems to be common.

chrisca wrote:...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 whole areas of digestive dysbioses and therapeutic nutrition have been the soft underbelly of medicine for decades now, that has so much aided the rise of fledging naturopathic medicine. The GI MDs lapses have probably been aggravated by the marketing for scopes and proton inhibitors. This whole area swirls with controversy. Once everyday IV nutrition is involved like the E-DS slides showed, I would worry about competence or Munchausen syndrome by medicine....

...disease affects the body's formation of collagen...can include joint hypermobility, bruising, fragile skin, gum disease, food allergies, gluten intolerance... Bowel perforation

These are often the symptoms of inadequate vitamin C levels or even scurvy. Oral vitamin C absorption has long been recognized as erratic in the general population, much less chronic/acute disease and GI problems. However many nutrients are likely to be missing with malabsorption, and may temporarily require very high loading doses of concentrated nutrients for repletion - the enhanced nutrient levels in slide 67 can easily be incomplete and on the low side for vitamins and non mineral nutrients. ...1400
watchful, active researcher and caregiver for stage IVb/c CC since early 2010. surgeries 4/10 & 5/11; 8 yrs immuno-Chemo for mCRC; now mostly IV C & no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: BUD2016, Cmarie03, jep and 41 guests