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reformkat
@reformkat

Posts: 1
Joined: Sep 18, 2018

collagenous colitis

Posted by @reformkat, Mon, Sep 17 8:29pm

I was diagnosed around 20 years ago. I was only the 7th case my specialist had ever diagnosed. so it was a little rare at that time. I had had symptoms for 10 years or so and had not gone to a specialist. So, now, I have had the symptoms for about 40 years. My doctor said in 2015 that it would burn itself out. It didn’t. There was a time when I was so much in pain that I was wishing they would just remove my intestines. lol Sometimes it is still that bad. Do we really need to have to take meds forever for this ?

REPLY

I understand what you mean by wanting to get rid of intestines! I was diagnosed 2009, initially treated with methotrexate. Symptoms returned, but a little different. I was sick for about 8 years, prednisone always worked short term , but then symptoms returned. Finally in 2015 I started immunosuppressive medication for several months. So far so good!

There is a new facebook group for collagenous gastritis. Thinking that might be a resource. However, everyone has collagenous gastritis – also rare.

@wendy2001

There is a new facebook group for collagenous gastritis. Thinking that might be a resource. However, everyone has collagenous gastritis – also rare.

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Does anyone know how one may acquire CG. This is one of the diagnoses that has been brought up to me as a reason for my loose stools (twelve weeks since finishing a round of Clindimycin). CDiff has tested negative twice. My next option is a colonoscopy. This is all frightening. Was healthy until this happened.

@guthealth – it is an autoimmune disorder I was told.

@astaingegerdm

@guthealth – it is an autoimmune disorder I was told.

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Thank you.

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