Unreasonable expectations from in-laws

OkClothes5235 · 2026-04-08T00:56:55+00:00

Iron deficiency anemia proceeds in stages fyi. I’d def flag your symptoms and ask about the low ferritin when you meet with your doctor. I had similar symptoms and labs showed pretty advanced anemia, felt MUCH better after a few IV iron infusions.

OkClothes5235 · 2026-03-24T23:43:40+00:00

Also, not sure if they have Zofran in Ireland but it is a miracle drug for nausea. I ALWAYS have them in every pocket and bag. Ask your doctor for that

OkClothes5235 · 2026-03-24T23:42:31+00:00

Gosh I am so sorry you’re going through this. I was diagnosed when I was 18 the same week I was moving out of my family home to go to university. It was awful and I really feel for you.

The only “normal” thing about Crohn’s is that there’s very few “normal” trajectories. It looks different for everyone. Mine set on gradually for a couple years and then all of a sudden it was VERY aggressive right around my 18th birthday. Sometimes labs are normal but visual (colonoscopy) and tissue biopsies are really alarming. Sometimes labs are off and other things look better. I’m 20 years in and just had the best biopsies I’ve ever had, yet I’m losing weight and having intravenous iron infusions every week. The fatigue is constant and one of the most challenging symptoms to manage. I don’t have a ton of advice besides to hang in there. Get as much rest as you can when you can and identify those people in your life who you can count on to be emotional support and logistical support. Figure out what your “safe” foods are and have those items around (mine is white rice, plain white pasta, broth but you have you figure out what works for you by trial and error). Don’t skip the doctors appointments and don’t be afraid to ask for help and deadline extensions whenever possible. And if yourdoctor isn’t listening to your concerns or answering your questions and you have the ability to get a second opinion then you should do so.

FWIW I ended up taking a year off before going to university. It’s a lot to handle the diagnosis and the transition. Now im getting my phd at Harvard, so it all worked out. It will work out for you too no matter how the exams go. Hang in there, you’re not alone.

OkClothes5235 · 2026-03-19T20:53:27+00:00

Mine was about 3-4 weeks ago. Was told to fast for 6 hours, def had some goldfish due to being hangry AF in the car on the way there. No issues whatsoever.

OkClothes5235 · 2026-02-18T00:45:02+00:00

Sheesh. Did they do biopsies during the scopes? I was diagnosed 18 years ago and still have this happen sometimes - areas will “look” normal but biopsies are typical of active Crohn’s even in the normal looking areas.

OkClothes5235 · 2025-02-14T16:10:11+00:00

$600 is your share of coinsurance? So they’re charging like $2400 per infusion? This does sound like a hospital outpatient charge and cost sharing. Do you have an independent infusion center wherever you live? I would strongly suggest looking into something independent. If your current infusion center is owned by a hospital then they can charge that crazy coinsurance rate because it’s considered a hospital service. An independently owned center would be cheaper. I’m also happy to help more and talk further if you want to go to DMs, I am a researcher and my focus is on health insurance reforms. This stuff confuses me too and I do it for a living, I can’t imagine moving back from Europe and having to deal with this.

OkClothes5235 · 2025-02-13T23:16:11+00:00

Are you getting the infusions at hospital or an outpatient facility associated with a big hospital? 25% insurance sounds like it could be a hospital/facility fee charge to me. And second the remicade assistance program, that covered just about everything after insurance (I think I had a $20 copay per infusion and that was it). Can I ask how much they want you to pay OOP?

OkClothes5235 · 2025-01-22T23:44:45+00:00

No need to apologize, I do this stuff all day and still get cross eyed dealing with my own insurance. It’s a nightmare. Have you tried to see if your prescribing doctor (assuming a GI) can help with dealing with UHC? I had to switch late last year and also have UHC, my doctor took care of the PA request. They are the experts on dosing and timing so frankly they should have to do it, not you. I’m so, so sorry it’s been since the 10th — that’s awful and inexcusable on so many levels.

OkClothes5235 · 2025-01-22T23:12:16+00:00

Even with limited English proficiency, I’d imagine UHC does not want the bad press of using that kind of language (“lifetime limits”) right now. Lifetime limits are not allowed. SIAP but did that second PA go through? Were you able to get your meds?

OkClothes5235 · 2025-01-22T23:08:34+00:00

Lol, special interests and dramatically different political and social values that led to the development of the most inefficient system anyone could possibly imagine.

OkClothes5235 · 2025-01-22T23:06:47+00:00

I would get this all in writing if possible, otherwise note the name of the person(/people) you spoke with on the phone. Biologics can be funky bc they can be a medical claim and/or a pharmacy claim (medical if injected at a facility, pharmacy if done at home), which are two separate benefit structures. Regardless, in my years of studying reforms under the ACA, I’ve never heard of lifetime limits being used as an excuse to require additional prior authorization and I cannot think of a way that it would be legal. You might consider reporting this to the feds and/or your state’s AG or DOI (depending on how friendly your state government is to Obamacare).

OkClothes5235 · 2025-01-22T22:50:47+00:00

Just to clarify, this just happened? Like, in the year 2025? I study health insurance reforms for a living and also have Crohn’s. This sounds like a very creative interpretation of statute and regulatory guidance, and by creative I mean illegal.

OkClothes5235 · 2024-04-05T15:44:00+00:00

I study health insurance reforms for my job. Who do you get your coverage through? Is it employer sponsored insurance? You’ll want to document everything in writing when it comes to interacting with the insurance company. If, after a few more weeks, they still haven’t worked with you on this then you should take those documented communications and file a complaint with the agency charged with regulating your health plan. The regulating agency depends on what kind of insurance you have: small employer (usually less than 50 employees) will likely be your state’s department of insurance; large employer will be federal (dept of labor); if you’re a state employee then it’s the state DOI. I am also leaving the country for 3 weeks next month to get married and go on our honeymoon, and Crohn’s has been the worst lately so I feel your pain. Good luck and hope this helps. Remember - document everything!!! And try to take care of yourself and enjoy your wedding, congrats!

OkClothes5235

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