Replies to Hi @epvb, I can only imagine how worried you must be as it is indeed a...

Discussion

Digestive Health | Last Active: Apr 5 12:55pm | Replies (554)

Comment receiving replies

@kanaazpereira

I can only imagine how worried you must be as it is indeed a rare condition. I found some information from Genetic and Rare Diseases Information Center (GARD), which you may wish to read: http://bit.ly/2nnHyCF

There has also been research that suggests that collagenous gastritis, and collagenous colitis share striking similarities and may sometimes occur together; (you can read more here, http://bit.ly/2nnX8y6); I'd like to tag @sodonnell, @shosh37 who have recently discussed collagenous colitis, and I sincerely hope they join in with more insight for you.

@epvb, as Teresa said, we would really like to get to know you better; what symptoms did you have that led to this diagnosis?

Jump to this post

Replies to "Hi @epvb, I can only imagine how worried you must be as it is indeed a..."

ebrousseau | @ebrousseau | Mar 22 1:17pm

@kanaazpereira I have both collagenous colitis and severe collagenous gastritis. Last year I was installed a feeding gastrojejunostomy because I became too weak and was unable to eat more and adequately compensate for the severe malabsorption those caused me. My stomach is compromised, collagen is growing, the stomach small, hardened and non-compliant.
My life is forever changed, I am very thin, and I live thanks to artificial predigested food (1/3 of my daily food intakes). No treatment has worked, trying new ones, last biopsies show progression.
Do we know of any severe cases like mine? I live in Canada, but willing to fly anywhere someone wants to study my case.

VIEW AND REPLY