Hi
I have recently been diagnosed with non-specific terminal ileitis.
But I really don't know what that means?
I was told I had a 33% chance this may turn into Crohns.
The only markers I had were a calprotectin test of 200. Is this normal or low for Crohns?
In my recent colonoscopy they could see very small erosions and a very very small polyp, but the biopsies could not prove Crohns only that there was some inflammation. I was told that this could be from anything from the prep for the colonoscopy to use of ppi's, etc.
I have previously had a right hemicolectomy due to a botched appendicitis operation. That was 4 years ago. Since then I have had lots of diarrhea with mucus, but no bleeding. I do get abdominal pains in the area of my terminal ileum, but mostly it is not too bad. I have been told for years that the pain is just from scar tissue. I can usually control the diarrhea with benefiber or will use questran if I know I am going out somewhere or eating something different to usual. I was given Pentasa to try, but not sure it agrees with me. (Had lots & lots of diarrhea after starting on it).
I had a previous colonoscopy 2 years ago but they only said I had gastritis, no evidence of erosions. My diarrhea symptoms haven't changed in the 4 years and I was pretty "normal" before the hemicolectomy op.
I actually didn't go to the dr for diarrhea. I went due to the feeling of having food stuck in my throat. This then let to blood tests, endoscopy and the calprotectin test etc ...
I have also been having the feeling that my entire digestive system is irritated - eg I feel like food is stuck in my throat. It is not and I have had a lot of tests on this and there is nothing there or wrong. My endoscopy came back clear as did all blood tests.
I am also getting lots of joint pains, mostly in fingers and feet.
I have had my b12 levels checked and have been using sublingual tablets but I have found they cause me diarrhea, so am using a spray at present. I just had a test to see if this is working but haven't gotten the results yet.
I am at a loss & I really don't know what to do. I feel like I am not quite right most of the time with lots of aches and just feeling very tired, but all my tests have been pretty ok and everyone tells me I look well.
I have lost about 14kgs in weight so far this year without trying.
Does this sound at all like Crohns ?
I am feeling very depressed as I really don't know what is going on.
Any help appreciated.
I have recently been diagnosed with non-specific terminal ileitis.
But I really don't know what that means?
I was told I had a 33% chance this may turn into Crohns.
The only markers I had were a calprotectin test of 200. Is this normal or low for Crohns?
In my recent colonoscopy they could see very small erosions and a very very small polyp, but the biopsies could not prove Crohns only that there was some inflammation. I was told that this could be from anything from the prep for the colonoscopy to use of ppi's, etc.
I have previously had a right hemicolectomy due to a botched appendicitis operation. That was 4 years ago. Since then I have had lots of diarrhea with mucus, but no bleeding. I do get abdominal pains in the area of my terminal ileum, but mostly it is not too bad. I have been told for years that the pain is just from scar tissue. I can usually control the diarrhea with benefiber or will use questran if I know I am going out somewhere or eating something different to usual. I was given Pentasa to try, but not sure it agrees with me. (Had lots & lots of diarrhea after starting on it).
I had a previous colonoscopy 2 years ago but they only said I had gastritis, no evidence of erosions. My diarrhea symptoms haven't changed in the 4 years and I was pretty "normal" before the hemicolectomy op.
I actually didn't go to the dr for diarrhea. I went due to the feeling of having food stuck in my throat. This then let to blood tests, endoscopy and the calprotectin test etc ...
I have also been having the feeling that my entire digestive system is irritated - eg I feel like food is stuck in my throat. It is not and I have had a lot of tests on this and there is nothing there or wrong. My endoscopy came back clear as did all blood tests.
I am also getting lots of joint pains, mostly in fingers and feet.
I have had my b12 levels checked and have been using sublingual tablets but I have found they cause me diarrhea, so am using a spray at present. I just had a test to see if this is working but haven't gotten the results yet.
I am at a loss & I really don't know what to do. I feel like I am not quite right most of the time with lots of aches and just feeling very tired, but all my tests have been pretty ok and everyone tells me I look well.
I have lost about 14kgs in weight so far this year without trying.
Does this sound at all like Crohns ?
I am feeling very depressed as I really don't know what is going on.
Any help appreciated.
