Thanks for sharing ur info and experience. I met my doc and he said the fact that i have no symptoms and have stable weight for months hopefully means things are under control and since i am undergoing a bottom up treatment i dont need to go under remicade for now if im not ready (which i am clearly not :lol2
so im ganna have a colonoscopy to see if things are better, worse or the same. only if things are worse i would go under remicade.
So can u tell me more about the wreckage of a fistula and how they behave? my doc said we can not say anything about how its ganna be as they are different. it can simply stay the same and even close, or get worse. mine is a perianal which opens out to the skin. Cheers! :dance:
(***Enjoy the moment with the ones you love, dont destroy its beauty and joy by thinking about what has not happened!):ghug:
Well it may be true that it's hard to predict for certain how the fistula will evolve or if it will go away on it's own, and it may depend on where they are located. I'm not rally sure about perianal but mine are forming in the tissue lining of my intestines and are at-risk of branching off and creating communication tubes to other organs (like the bladder, other parts of the intestines, or the stomach). Basically, instead of just being a pitted ulcer, if the fustula breaks thru the weakened and inflamed tissue, it develops tubes that will continue to grow until it reaches another part of the body and start connecting to that. At least, that's how it was explained to me based on what my last scope indicated. The Remicade is a way to help smooth out the tissue and keep it from doing any further damage, preventing a surgical requirement.
Basically, I was diagnosed with Crohn's after having been infected with C-Dif. I fought off the bacterial virus with two rounds of antibiotics, and the Crohn's-like symptoms declined and I gained weight again, and don't feel any pain whatsoever. However my bloodwork and latest scope show that I'm still experiencing the chronic inflammation, and the more recent scope showed the fistula but they were not there in my previous scope. Because of how rapidly they have formed, my Doc seems to think they will keep getting bigger based on the fact my intestines are still weakened and inflamed.
I am taking a CT Enterography next week before actually starting Remicade to see if the fistula have started appearing on the outside of the intestines yet, as we have only seen it from the inside so far.
Trust me, since I am not really affected by any pain, weight loss, or emergency bathroom trips anymore, it's easy for part of me to walk away and say "
screw it, I'll be fine and take my chances." While that is SO very tempting (to avoid potential pain and high cost of this treatment), I realize that just because I don't "feel sick" doesn't mean that all is well and I've just been taking into consideration everything my doctor keeps recommending. Basically, I'm going to take her suggestions as a preventative measure in hopes that my current condition doesn't get any worse or require surgery down the line.
Luckily, the two people I personally know who have had to to Remicade in the past have had very good experiences and one girl even feels healthier than ever before (she rarely gets a cold/flu sickness). So I'm hopeful that this process may help me see the light at the end of the tunnel for my treatment, but it does make me hesitant at the thought this might have to be an ongoing lifelong process.
