so all my tests (MRE, colono) show mild inflammation, but my symptoms are far worse than we would expect from such low levels of activity. Although my lab levels are terrible. My most recent GI who isn't a true IBD specialist thinks I have IBS and IBD, which I kind of think is just a cop out. I think he is afraid to increase treatment without massive ulceration or strictures. Although I understand where he is coming from, like a risk managment perspective- but this is my life! I'm on MTX and some other light matience stuff, nothing major. I feel like he says this as an excuse not to treat and just tell me to try different diets (which I've done, very little success). Anyways I don't think I have IBS, just non-typical IBD
For those of you who follow active Crohn's research know that there is a major debate about if damage starts from inner tissue and goes out or if it starts on the surface and go in. I personally believe that years of inflammation have damaged nerve endings in my bowel and have caused scar tissue that may not be evident on the outside. One suggestion that has been made, is to let me get ill-very ill- and then run all the tests again so we really know whats happening which sounds flippin miserable.
Now that I rambled forever, does anyone else have the IBD and IBS issue, how do you convince doctors not to give up on you once they stop actively treating you.
For those of you who follow active Crohn's research know that there is a major debate about if damage starts from inner tissue and goes out or if it starts on the surface and go in. I personally believe that years of inflammation have damaged nerve endings in my bowel and have caused scar tissue that may not be evident on the outside. One suggestion that has been made, is to let me get ill-very ill- and then run all the tests again so we really know whats happening which sounds flippin miserable.
Now that I rambled forever, does anyone else have the IBD and IBS issue, how do you convince doctors not to give up on you once they stop actively treating you.
