Posted 3/30/2009 3:31 PM (GMT 0)
Hi I am brand new here so I hate to have my first topic so long but I feel like I have no one to bounce stuff off or to offer imput. I am in desperate need of some outside opinions. Docs seem to have their mind made up before they even hear how I am actually feeling physically.
Here is my history in bullet form:
-severe pain started about 2 years, went misdiagnosed for uti's for over a year
-diagnosed with crohn's after hospital stay for severe infection this past summer, started Pentasa (it wasn't absorbing though, could see it all in stool)
-Severe pain throughout the fall
-Had colonoscopy disease limited to the ileum where they said it was thick and bulging
-Told to go on a biological treatment or steroids
-At christmas In desperation changed diet and symptoms literally disappeared (except when I made food mistakes) and the pentasa seemed to be absorbing.
-feeling better actually started eating more, even fibre, but as I started having more gas I realized that there was gas coming through vagina
ANYWAYS I went to my enterologist today he said based on my past imaging and a visual look at the rectum he is confident that the fistula track is coming from my ileum. And even though my ileum doesn't hurt on palpatations I am having no pain he wants me to do the biologicals. Here is where I am so confused, everything I have read says biologicals rarely close Internal fistulas, furthermore the fistula could have happened during the time where the inflammation and pain were bad (fall). However he doesn't want to do any new imaging to try and determine whether the inflammation is active. I even suggested I could go pay for an mri but he said if he didn't see inflammation on it he would still suspect it was there. I asked to be referred back to the surgeon (i'm in canada where we can't call specialist without recent referral) but he kept insisting he wanted to medicate me more so I let him write me a script for entocort ( which I also don't understand because I thought steroids were bad for trying to heal fistulas or before surgery). I don't really want to take it though because I FEEL FINE (except for the fistula) I know there is still some narrowing in the ileum because I do get all sorts of loud gurgling when the food gets to there but my hang up is I don't want to put biologicals in my body (and have to stay on them for a few years) when i don't even know if I have active inflammation or the narrowing and fistula are a result of the long undiagnosed unmedicated flare.
What are your thoughts on this mess, I am so confused and frustrated because I simply do not know how to proceed from here. Thoughts, ideas, questions? I just don't agree with the take this med and see how it works without even determining if I really need it.
also what is the deal with this entocort?