how coincidental, Crohniemom, I just asked on another thread how to find fistulas!
I've just been diagnosed and I have all sorts of weird pains in my abdomen, sometimes what I eat results in tingling or burning or aching in some areas, sometimes the groin, and this has been going on for years pre diagnosis. I asked my GI (who found the inflammation, but has little else to recommend him) and he said well, the nerves there are all related. or it could just be ibs, he said. I had a sbs which was normal. would that have found a fistula? is there some sign I might have a fistula? or should I get an MRI as part of my initial Crohn's workup? I had an MRI a couple years back for my uterus. would they have seen a fistula or does it need to be done specifically looking for it? normally I'd just ignore these pains but I keep reading posts about hidden inflammation and fistulas and I'd like to address this sooner rather than later.
any help would be appreciated, thanks!
do you know why it is not recommended that you do immuran and remikade together? I am currently on both but I see my doc next week. So if it is somethig I should stay away from I just wanted to know.
I had exactly the same experience as you. I actually thought I'd eliminated my UC by removing my large intestine, only to find out 3 years later that the lump on my labia was a fistula from my newly diagnosed CD. I was feeling great at the time and it completely came out of left field. Unfortunately, because we didn't realize it was a fistula for quite some time, we treated it as a GYN problem for too long and it got much worse and I needed surgery. After the surgery I started Remicade and it was great. I felt like a million bucks for a very long time.
I too am grappling with having a baby because of being on Remicade/Humira. I feel for you.
Do your best, then to hell with it.