Hi everyone, I am new here. I was diagnosed with CD 2 years ago, not long after the birth of my son.
So, pretty common I believe, none of the typical drugs do anything good for me. In fact, steroids brought on type 1 diabetes and remicade almost stopped me breathing. I've also tried Humira and Mesalamine with no positive results. I was experiencing extreme urgency, large amounts of blood loss (hemoglobin got down to 6.2) and basically wasn't digesting anything and lost 25 lbs.
Then, I got a positive c-diff test and was put on Vancomycin. Within 2 weeks I was well on the road to recovery. That was last May. Since then, I've done several rounds of the Vanco because I just can't seem to permanently shake the c-diff. The wierd thing is though, that when the c-diff is under control, so is the Crohn's. I haven't been on any prescription meds now for well over 6 months (not even Vanco) and have been 'controlling' things with nightly probiotics and a fiber-free diet. If I forget the priobiotic or eat something I shouldn't, I flare up within a day (and luckily settle down again within a few days). I am sure that the flare is c-diff related and that the probiotics help keep it under control.
I feel like I'm walking along a tight-rope with this disease. One step in the wrong direction and I fall hard. I don't really think I'm in remission because I can't eat normally or miss a probiotic.
Is anyone else's disease so tightly linked to c-diff?
Is anyone else following a fiber-free diet with success? I considered doing the Specific Carb Diet, but wanted to try a simpler one first seeing as the SCD is so much work - and I'm a working mom with very little time to prepare food.
Sorry this post got so long, I hope to get to know you all better :)