collagenous colitis

Posted by reformkat @reformkat, Sep 17, 2018

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 ?

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.

@guthealth

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.

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So sorry to read what you’re going through. My husband was just diagnosed with CG. He also has microscopic collagenous colitis. Which is causing the diarrhea, and weight loss his dr prescribed lomtil to control the runs, and budesonide for the colon he takes sucralffate for CG. It’s all so overwhelming. Get the tests done. Once you know you can start a management program. He also changed his diet, that really helps

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