It sounds like we are some of the newbies here in the forum, experiencing this stuff for the first time, and I definitely relate to your concerns.
I was also diagnosed last July. At that point--i now realize-- it was very mild disease, mostly in my upper rectum, though my scope showed it WAS present, on a cellular level, throughout my colon. Luckily I nipped it in the bud because --- oddly enough--- my 72 yr old mother had been diagnosed just a month or two before me.
When I was unable to come off the Asacol without my problems returning, in late september, I realized that I was going to be on meds permanently, which was really tough to hear. I have gone through a lot of denial with this whole thing, and am convinced that if I just find the right combination, ill be able to cure it. --I hope so-- Ive been trying. I became 100% dairy free (and i mean NO dairy products
, not even in cakes, processed food, etc), and that helped significantly. It seems like you have also done this. After various attempts, hemming and hawing, and going back to it, I finally left GLUTEN behind. Ive been 100% gluten free since march, and no longer have any bloating (i used to live my life bloated). I also avoid all processed foods, preservatives, colorings, msg, etc. This also has helped. I can also say that I have had to cut out alcohol 100%. I kept trying to have 1 or 2 drinks every so often, but that inevitably brought back the bleeding. (FORGET about
caffeine, or other stimulants. I think that played a role in the development of my disease)
After a few months of really disciplined eating, I was down to 1 (watery, diahrrea like) bm every morning. I still wasnt happy, I mean i wanted to have a "normal" bm, but it WAS regular, there was NO mucous and No blood.
I am currently in my worst state yet. I think its been my first real taste of the disease--13 bms, endless blood, and inflammation so bad I cant bend or stand too long or sit up in a chair. BUT, I think I can attribute it to several triggers:
1) I tried probiotics (was having lots of yeast infections)-- and this gave me 2 weeks of diahrrea, which I kept ignoring, thinking I was adjusting.
2) I missed a day or two of meds, and felt fine, so decided to start tapering my Lialda on my own ===DONT DO THIS
3) Strenuous international travel--very stressful, complete change of diet--sudden increase of fiber (god i love rice and beans!!!)
4) more strenuous travel home with a head cold (Oh, did I mention a few alcoholic drinks in Brazil---how could i resist??)
5) followed right up by a 7 day course of flagyl for bacterial vaginitis (could this be related to the probiotics??? i dont know man, but my vagina flora is wack, just like my gut, im sure) ---OMG BIG MISTAKE!!!!
I just started prednisone (enemas werent helping) and I seem to be having immediate positive results.
AS soon as I get healthy again, I will be super conscious of any potential triggers, and make sure I dont let them add up and accumulate....
Hopefully that will achieve remission and keep me there.
I dont know if my long post is worth anything, but I do feel your frustration and can relate to your anxieties.
Best wishes for health,
Post Edited (gonnaworkthruthis) : 7/7/2009 5:34:18 PM (GMT-6)