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Are biologics after surgery a must?

hello,
i am trying to get any information i can toward making the best choice regarding my treatment...

so.....last May i sorta accidentally almost died, before knowing what was happening with me...

was down to 100lbs from my usual 160....its stupid...anyway....

ended up being diagnosed with abscess and fistula......which i am told they removed along with my apendix and part of my small bowel, which nobody ever was able to tell me but im guessing about 15"........then, standard i suppose, ileostomy, reversal, then prep for biologics.....

its been somewhat a blur of course......as i regained my brain and some half functional routine, i dug in hard researching as much as i could.....i gained the weight back fast, because i was pretty freaked out....you know, when you cant even sit down without feeling your bones and loosing balance etc....

so.....ok, i will try and not drag it out so bad, just whew you know haha....

so, i was set to start humira(the only thing medicaid will cover for me), then like within days i get a call and 1 of 3 TB QF tests resulted positive so need another test...ok...
they did the wrong one, another QF, which resulted postive.......they were supposed to do a t-spot, which i had done after the wrong lab, resulted negative......

however, since i had 2 positives now, my virologist said it isnt worth any risk, and no ammt of retest of a 95% accurate tspot etc will change that....ugh...
if they didnt do that one wrong lab, i would have been greenlighted for humira, which now im told could have killed me? so.....feels like they are making things up as they go along um....even after i said about it, they wont change their policy or anything, just attack me like im trying to avoid antibiotics.....

which, its getting to the question i promise lol......

so virologist tells me, if i wasnt taking biologics, i wouldnt need 4 freaking months of rifampin, which sounds more likely to trigger me than anything....

honestly i dont want to take any of this mess!

but nobody will talk to me, like a real person......so it is hard to know what risks i am actually facing.......i have had a hard time finding any info about my specifics....

so even with the rifampin......i mean, i dont think i have TB....then after taking the rifampin they still cannot verify anything...if i had it or if its gone etc.....but if i get it in future it means i cant take rifampin again so its reasons like that i dont want to take it..............however, even if i didnt take the humira, if i ended up needing to later on, so....its best to treat for TB now they say....

ok so asking GI team, and its like biologics is all there is, or else i am "declining treatment".......and of course there is no way to determine how good or not i am doing by CRP tests or whatever they have.....

i have since, created a full revolution of my routines.....which is still progressing of course.....

i suppose i am in a mild flare atm.....

i cut out sugar tho, aiming along a sort of....paleo, lectin free, grain free, low fodmap.....pressure cooking, soaking techs etc of the things i do eat.....plus 30 or something supplements targeted toward CD and leaky gut type ideas....

so......yes i am willing to work at this.......but then you hear them say like doesnt matter what you eat or anything you do etc.........so i gotta wonder.

how true do people feel that is?

they are telling me like, because i had the surgery, it is lunacy to try anything beside biologics for the rest of my life.....the risks of relapse are higher, permanent damage etc.....

i also understand there isnt exactly clear answers science can give us just yet.......hoping for better perspective anyway.....

i read some story too about people staying in remission for years and years by being mindful of the type of things i am trying to pay attention to and learn about.....but most of them didnt quite get to surgery before making the changes......

i am extra nervous for now because in some ways i feel like i am 20 yr old again, but realize i can irreversibly mess this up....

happy to found your community here.....i work with another xenforo site for some years, but unrelated to digestive issues.

Kind Regards
 
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