Are biologics after surgery a must?

[Ignotius]

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

 

[Guerrero]

Hi Ignotius,

sorry for the late reply.

First of all I totally understand your mood and all the questions that came around your mind and find no answers from most of the doctors.

I been there too…, till I stopped asking too much questions that anyway won’t have any definitive answers and just try to follow the easiest paths for me and have most chance to work for a disease that is mostly unknown.
That meant go with biologics, because in all the serious studies they seem to be working better than the other treatments, and adapt my diet in just cutting most the processed and industrial food, and try to live a life as normal as possible. I know there may be better diets, but much harder in terms of adherence.

when they say it doesnt matter what you eat or what you do, it’s more they dont know what to recommend… but an healthy diet can’t be a bad thing… ok maybe it wont be enough, but still worth it.
The bad thing with some diet like SCD is like it so complicated to follow.

Also, many CD patients end up with surgery, and have the same questions as you have about what treatment to follow and which diet. I think diet may be very personal and case by case, while regarding treatments the best options are the ones that good doctors suggest you.

please dont hesitate to ask for more help and good luck for the next step of your rehabilitation.

 

[Ignotius]

yes i know its no easy answers is the problem of putting in perspective....and what options one doctor suggest wont be what another says, so its important i think to understand or at least be able to talk about the reasons behind things....

i am pretty extreme with the diet, its not a problem at all.....the routine part, makes some bits easier actually, not having to think about it....but i watch the clock alot closer for sure....

i have considered things that should be mentioned with things like SCD, that i feel arent....basic things even like the difference of breaking down anti nutrients and converting starches so they dont break into glucose as much etc... which should basically have to make a difference by any basic common sense you know...but who could actually guess how much.....

it would be nice to be able to monitor at least....if i get something like im doing which is not only diet but a couple dozen or so carefully selected supplements/nat medicines........so i sort of have to wonder how all that adds up to anything....

it was so hard to even imagine any kind of normal for.......wayyyyy after 2-3 months or whatever they tell you coming out of surgery LOL......
but ive been able to sense some progression of sorts....but that can be false encouragement.....idk...

i think i need to talk with a couple ND, then get recommendations for GI from there for a second opinion......just to make sure this really is the only thing that can make sense is biologics and rifampin prep....if it is, it is.....but they just say do this you know an you see the fear an no explanation and supposed to be comforted with such risks?

i know some data is vague, but i still only talked with one team that isnt really advanced into this science by any metric...

 

[my little penguin]

If you crohns was serious enough to require surgery
And removal of 15” or more of small intestine
Then biologics would be the most recommended course

There are many different versions of drugs for tb
Drugs so lots of options.
If you were to ever get tb later

Diet alone is typically not recommended because the only proven diet to reduce inflammation is exclusive enteral nutrition
(eEN -formula only no solid food ) this works similar to steriods but not really a good long term

It’s not a matter of just following a diet
You need healthy small intestine to survive

Your large colon can be removed abd have an ostomy
But no small intestine means no life
Tiny small intestine means short gut syndrome and nothing but amino acid based formula typically from a tube to survive

Keeping your intestine as healthy as possible as long as possible is the goal

 

[Guerrero]

Of course keeping the intestine as healthy as possible is the goal. However it is correct for anyone to seek a second opinion, just to hear another version of the story. At the end it could be similar or not so different. But sometimes also the way someone explain something is important. Talking about short gut syndrome or surviving for a condition like crohns disease in 2022 makes absolute no sense, and is just annoying and stressing people uselessly and for sure that dont help.

 

[Ignotius]

so if they only took 12" thats ok?

its just extra confusing to me by certain details like how i initially felt and they claimed to remove all disease parts....i know, it comes back etc.....but even with EEN i can look at it like well some/all of these drinks actually have bad things in them so that program hasnt quite been nailed either so far imho....

i honestly feel ive improved some logical elements over EEN and SCD.....also putting heavy focus on collagen/protein with things like bone broth and bpc 157......i can feel a little crampy at times at worse but theres no blood or anything....

 

[Ignotius]

or even with the tb/virologist situation, i still wonder like if there are so many options, why am i only given these bad ones?

i am at a disadvantage to not be closer to these sort of second opinion, i am trying to change that tho...

 

[Guerrero]

Yeah 12’’ is fine it’s a very classic and standard size they usually remove and we have like 275’’ length so you can imagine…

Imo most important thing is you dont want to have a fistula and a situation which you almost die and need a surgery again.

the best thing to clean your intestine from crohns and avoid fistula is to have biologics… not diet. Diet will help slightly yes, but it’s not guaranteed it works.
Cause unfortunately the thing with crohns disease is that if not under control that kinda shit could like fistula, strictures , inflammation may reapear.

i made the same mistake, after the surgery i chose not go with biologics, and i stay not well for a couple of years and strictures came back

 

[Ignotius]

thanks for the input.....yeah actually i have no idea how much...i asked a few doctors said they didnt know and left it at that....another sort of guessed and held up his hands like 12-15 inch while telling me, about 15cm......and that was a doctor lol so i was sort of too dumbfounded to ask for clarity....close enough i guessed, with the info, but seems about a foot....

starting to feel like what i really need is a second opinion from virologist.......but the whole situation is tied together so it gets confusing, maybe i need both, but should start with virologist then try to find another GI after that.....since it seems much harder to find one for my particular chrons situation...

i did have fistula and abscess and i really dont want to go back there, but im pretty sure for now at least its not like that, even tho they said they cannot be certain.....i had it in the most common spot you know, just leads me to believe they got that part......but as far as what treatment or path even to humira idk.....cuz i really really dont like this rifampin plan and pretty sure i dont have tb.....

but of course the longer i wait, and its still 4 months of gut killing antibiotics, specially made for bacterias not virus' and all this mess could well do more harm than good but i just hear one person say well its worth the risk because we can never actually tell if you have tb or not........thats a hard pill to swallow

i take a handful of anti tnf type stuff but i know its not the same category of power and without an ND to help make sure my doses are optimal its a bit of a mess tbh...

regards

 

[Guerrero]

Actually antibiotics are not that bad for crohns. Some novel treatments are based on antibiotics. It killed the bacterias that could make a mess in the intestine and trigger crohns. So if you kill it and rebuild your microbiome eating good bacterias (like kefir etc..) it’s a good thing.

As i have strictures I sometimes need a 10 days shot of rifaximin to clean my gut and it works well.

 

[Ignotius]

im not out of balance atm tho.....and what you are saying was my first thought, until i read the side effects/warnings list.....lol
which sounds like the definition of a flare, but worse...

even the basic things they tell you like, "will inhibit nutrient uptake" or such......we all here know what that means...

interesting tho this close relative....does make me feel a little better.....id still rather prove i dont have TB tho, somehow....
running out of time on that tho, so im going to try hard i guess to find a virologist in denver area this week....hopefully that is easier since virology is a bit less mysterious from GI stuff...

if thats what i have to do and the same thing i should have just done 6 months ago, i guess ok, but i do want to be sure because this could go a couple ways. even the delay alone while being treated then plus saturation time for humira.....its not something im happy to think about cuz alot can happen in that time which i dont even know because nobody explained it, but i can tell that much on my own.

 

[my little penguin]

What about isoniazid?
It is used to treat latent tb
No Gi issues at least from the folks I have seen use it that had crohns (not many 1 or 2 I think )
Only 8-12 weeks on it before you can start humira if I remember right
Then you take it with humira

 

[Ignotius]

you have to take that one 6 months or so tho....same frequency etc so not much benefit i think...

i was offered that, but only to take in conjunction with rifampin....which only shaves a month off im not to keen about either...

the rifampin is same tho, i can take humira 3 months or so in.....

im not sure i even care about my body and fluids turning orange, but perm teeth stain and risk of (ironic) bacteria infection etc...theres a bit of a list not sure i like...but she just shrugs when i ask about options, then tells me similar like they will just do something else in future if i get it....but cant be tested for it again etc.......there is benefit to avoid or minimize any of this i can....

i mean to me, i would just about say a 50/50 on 4 qfg tests...then a negative tspot....ok sure thats clouded, but if i got like 3 x more tspots negative at 95% on top of that, idk how they can just dismiss anything that comes after.....got the 2 positives in the same week too since they took the wrong lab...and again, if they didnt do that, i would have been rushed onto the humira.....

so its all very circumstantial and unclear id like to see an improve around you know....im a data/detail oriented brain, so, this well we have no idea but just do this sort of thing doesnt sit well with me at all....

 

[my little penguin]

The quantiferion gold is the one they tend to rely on out of the two
Tb spot can read false positive from pathergy
Or false negative due to compromised immune system or immunodeficiency
So getting many things spots probably will not change anyones mind
Definitely get a second opinion from infectious disease specialist

The quantiferion gold has a second part to determine if you would or would react due to immmune system issues to validate the test

However there was a study where where if you got a tb spot and then inadvertently got a quantiferion gold blood test too close together the blood test may not be as accurate
Again get a second opinion.

Isoniazid can be taken alone for 9 months without anything else

Second opinion

 

[Ignotius]

idk, ive just read somewhere that the t-spot is 95% accurate.
i cant imagine how taking 2 separate tests would influence each other, just by having the one performed....but i am certainly with the second opinion part....

which is why ive started this topic to try to help me find doctors toward all this.....

ultimately it feels like throwing darts at a board.....which is what i just did....the UX of these sites is not great....i am waiting a call back from one hospital now, which feels pretty random but just as good as anything for all i know!....national jewish health...

i still want to talk with a GI doctor who understands my case.....but without time travel im not sure how thats possible....
cant afford an ND to help guide me to one atm, so idk... i think this lTB thing is obviously first so assuming they will tell me the same thing the last did, i will have to start rifampin, which will give me a couple months last effort to see about the humira, but like i say by that point i will likely be flaring or pre-flaring so will have even less option.........irony, ugh....

i did ask my current doctor when i saw her tho......if i take the 9 month treatment, is it less intensive to the gut etc....
she said not really but its more a problem because people dont like taking antibiotics for 9 months.....

so i factored that as being worse and leaving rifampin my best logical option......i dont know tho, i still dont see how i could even have it...