#this shit is expensive and i can't keep using stuff that causes these cysts like this | Explore Tumblr posts and blogs

naamahdarling · 3 years ago

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OKAY BUT NOW IM REALLY CURIOUS: if you don’t mind sharing, *how* can you trace your IBS back to capitalism??? (sincerely, another chronically ill person now suspecting they’re in the same boat) (if you *do* mind: I sincerely apologize! Please feel free to delete this ask?)

This is all TMI for poop.

I have the kind of rosacea that causes such bad acne it forms multi-pimple colonies literally called "monstrosities." It is very painful during a flare. It feels like burning and often makes me bleed. I want to stress, this is not "cosmetic". I have infected cysts and sores on may face constantly. At one point I had 40 or so active lesions on my face, varying from pimple-type whiteheads to weeping sores to subdermal cysts. I was covered in scabs. I developed dermatillomania, which I still have.

At one point I had a cunning weasel of a doctor who managed to treat the rosacea by a combination of topical metronidazole and Xifaxan/rifaximin. Rifaximin is usually used for travelers's diarrhea but there is excellent evidence that it works on rosacea, in studies sending it into remission for at least 9 months. It worked on mine for 2 years.

Somehow he got this massive dose long course of antibiotics prescribed off-label. Then he disappeared because he was forced out of practice for overprescribibng pain meds medicating pain patients adequately.

It flared up again.

I had private insurance. Insurance considers skin a luxury organ and acne as purely cosmetic, and will not cover most treatments for it. It doesn't keep you from working, after all (capitalism!). They do not care.

So instead of literally any other treatment for it, they decided that a 3 month course of 200mg doxycycline 3 times a day would be just fine. Doxy is dirt fucking cheap, is why. I didn't really want to do this, I was concerned it would make me ill, but I was in so much pain. I had to do something. And I HAD to try this before anything else. Insurance algorithms were forcing me to take the cheapest medication despite my concerns over risk.

What risk? It wiped out my gut flora until I was pooping green due to bile salts not being broken down. I never had diarrhea during those 3 months, which was all my doctor had warned me about, but in that last two weeks I was pooping recognizable food, undigested. I feel very stupid for not realizing something was very wrong sooner than I did. I guess I thought my gut would bounce back?

Turns out I developed IBS that I still have 10+ years later despite being competent at managing it and having tried everything available to cure it that isn't quackery. (No advice please.)

Capitalism is behind the reprehensible drug prices and insurance policies, and also my fucking poverty due to atrociously low SSDI payments, which all meant I could not pay the FIVE THOUSAND DOLLARS for the one drug that I KNEW gives me relief.

So now I have IBS and STILL HAVE rosacea. The irony? Rifaximin reliably works on BOTH.* And I can't get it. (No, really, it is impossible, Medicaid will not pay for it. It's still super expensive at the doses required.)

And the 2 cream stuff things that help it were not generic for a long time. One cost $500 and one cost $350. And it really only helps, and doesn't fix it.

One went generic and is now "only" $89. I have it now! I got some because y'all helped me out!!! And I still bled on my pillow last night and my GF has to be careful how she kisses my face or it hurts me. It reduces it by maybe 50% at best. Don't get me wrong, that is SO WELCOME, but it isn't a cure.

So yeah. Capitalism forced me into a situation that gave me a functional bowel disorder that severely limits the food I can eat, and the meds I WAS FORCED TO TAKE didn't even fix my disfiguring skin condition.

And that is how capitalism literally gives me the shits.

* Both are correlated with SIBO, which rifaximin is also used to treat.

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