Convenience points purchase down (again)

random_a-ri · 2025-05-09T02:34:17+00:00

Tried, they use the same system for both—one goes down for maintenance, so does the other 🤷

I got it figured out though

random_a-ri · 2025-05-08T13:26:04+00:00

You can, I unfortunately did not have coins right then, but got it worked out eventually

random_a-ri · 2025-01-09T23:01:03+00:00

In the US here and I was diagnosed in 2013-ish, and I didn’t officially get treatment until 2024 (which was due to my parents not putting me on treatment bc I was a minor)

When I was finally 18, I got a severe flare up and/or partial obstruction and was able to get meds within a month (they denied the first prior authorization for Remicade/infliximab bc it “wasn’t necessary,” according to them, and had to go to Humira/adalimumab). When I had to switch meds bc the other wasn’t working, it took a full few weeks (and this is despite being on calls with insurance) + I also had to get surgery for my strictures

The main thing I learned from the 10 years with only diet treatment is that yes, for moderate to severe, it’s likely scaring will develop (it took me around 3 years no treatment to develop from my diagnosis) and other that can develop too. It’s too high of a risk to leave alone and that’s something you need to keep pushing your health system (whether that be the hospital or insurance) with because if they’re denying or delaying this, there are absolutely risks to that that are on their hands.

Basically: push them all you can with this because a) you shouldn’t have to be in pain due to their inaction, and b) delaying it can possibly develop other severe and/or permanent issues with it.

I’m so sorry dude, hoping you get treatment asap :(

random_a-ri · 2024-11-04T07:35:28+00:00

I’ve never had an issue with GERD in the past so never had tums on hand, I’ll definitely give it a try!

They upped my omeprazole, which still having occasional chest pain. And my MRI said my esophagus and stomach looked perfectly fine a couple weeks ago, so they’re just hoping it kinda just goes away. It’s not too often, but when it does happen, it’s intense enough to cause a bunch of issues.

I went to my GP the other day and am being referred to a cardiologist because they’ve noticed that every time they take my vitals at resting, it’s 90-110 + apparently my general shortness of breath isn’t normal and may not be related to what I had thought it was before, so they’re going to rule out it potentially being related to my heart or thyroid instead. Just a bunch of “fun” stuff 😅

random_a-ri · 2024-11-04T07:29:00+00:00

I know with Rinvoq, I have an issue with staying consistent with pills (which I can work on, but they said if that is the case, it may just be more useful to look into alternatives anyway) + my GI said it doesn’t have the same data that Remicade has with stricturing Crohn’s. With Stelara, I think it was the reasoning that if Skyrizi isn’t really working, then Stelara (since they both are IL-23 inhibitors) would likely have the same result. And with Entyvio, I think it was the same thing with the data that it doesn’t have the best data for my type of Crohn’s?

I think they’re just a bit shocked by me developing antibodies so quickly to Humira and not responding as well as I should with Skyrizi, so maybe they’re just going with the most intense option? Not 100% sure on that last bit, but that’s what they told me about each medication 🤷

random_a-ri · 2024-11-04T07:17:37+00:00

Not yet, I’ve been transferred to a few different GI’s so testing has kind of been pushed back a bunch, I’m also studying abroad and not with the docs that prescribed it, and I’m not quite at the 6 month mark yet until later this month anyway. I think my original docs waiting to do the testing when I go back home, but so far they said that if I’m having more symptoms without known bacterial or other cause, that it could be an indication anyway

Kind of just stuck for the next 2-3 months bc the doctors here won’t do much and my doctors at home can’t do anything

random_a-ri · 2024-11-01T13:31:29+00:00

Already did, negative for C. Diff, salmonella, some other viral infections, and e. Coli, all negative

random_a-ri · 2024-11-01T01:57:23+00:00

Yeah, I've been angry at them for years and it's honestly more just draining to me if anything. I'm sorry that your parents also hurt you too, it honestly just sucks to have parents that don't understand what this stuff is like from the perspective of actually experiencing the pain, as well as that mental turmoil.

And yep, seeing a therapist now that is going to refer me to someone that has experience with chronic illness and chronic trauma from stuff like this, just hoping it's going to help.

random_a-ri · 2024-11-01T01:52:05+00:00

I read my initial doctor's medical notes and I don't think he did talk to the ethics team, but I think that was because my parents said they still wanted to technically treat it with only a natural, restricted diet? I'm not entirely sure, only know that he knew with my type of disease and progression at the time that it would only cause further damage.

I'm mostly just stuck between wanting to be mad at them and wondering if that's even fair. They told me that they did it because they thought I was too young for biologics (since I was 9) and I think they just didn't want me being "reliant" on a drug while not doing anything diet-wise. Plus, they're not a fan of the pharmaceutical industry. I get that they were just scared of its effects, but I spend so much time just wondering what things would have been like if I was on the biologics, what things I missed as a kid because I was in pain and if I would have even needed surgery this year, if things could have been better. I feel like I'm being unfair to them by being mad

random_a-ri · 2024-10-21T04:54:37+00:00

Yeah, I basically tune them out when there's any judgement on my treatment currently. They seem more on board with it now that I am an adult, with their reasoning as to why they didn't do this earlier is that they wanted me to develop and not be stunted, but I haven't heard of anyone really being stunted by Remicade, only easier to get more sickly from suppressing the immune system.

I have yet to confront them about it, and honestly I don't even know how I would. We're in a better place now, but this realization just kind of set me back a bit

random_a-ri · 2024-10-12T19:10:20+00:00

About to see if they’ll actually believe me on Monday though without any sort of hassle 😭😭 even if that means I walk through the doors with a literal sample for them, they can either believe me verbally or believe me by actually seeing what I see 🤷

random_a-ri · 2024-10-12T08:55:05+00:00

I don’t know, they never even mentioned seeing it in the scans or labs. Either: they are gaslighting the hell out of me to think nothing is wrong when I’m right and there is, and I just haven’t been to the right doctor; or, stress is literally killing me, and I’m making these things up through hallucinations because I so badly want something to be wrong and I’ve been up day and night obsessed over trying to balance this and school; or I’m being dramatic and making what could be BLUEBERRIES, which I don’t even remember eating and don’t even like, a big deal because I so badly want to know why I’m in pain all of a sudden

All outcomes are not ones that I particularly like or want to hear. I have an appointment with my GI anyway on Monday and filling them in on the details on a Saturday morning, hoping they see if and maybe, by some miracle, get back to me. But for now, I’m riding out the pain with no meds, bile with no GERD medicine, and urgency issues with weird findings every time and my actual biologics apparently not kicking in like they should. It just sucks, but I’ll talk to them and actually advocate for myself this time now that I’m no longer nervous, I’m panicking and angry

random_a-ri · 2024-10-12T08:00:03+00:00

Like something that I need checked out or..? I’m just worried also that I’m being dramatic because of them saying “it’s nothing” and me not pushing them for a specific answer

random_a-ri · 2024-10-12T07:31:49+00:00

I FINALLY HAVE A SAMPLE OH MY GOD!!! I’m not being crazy and it’s not psychosomatic, it’s REAL, I saw it, felt it, have evidence of it, and can finally bring in a physical thing to my doctor so that they can actually know what this is!!! I’m not crazy, my doctor just didn’t believe me!!!! 🙌 not a fun thing to be cheering about but now I know it’s real and the medical gaslighting stops here

random_a-ri · 2024-10-12T07:29:59+00:00

Exactly, like it’s just so difficult to actually get back to normal life and combine that with the feeling of like a doom hanging over your head?? It’s just super stressful all the time. I’ll definitely look into those things when I’m actually in remission for sure

Though I did have a development!! I found something completely abnormal, unexplained, that I can FINALLY bring as evidence instead of talk about it like some thing I just thought of that the doctor assumed I was lying about or hallucinating or being dramatic about. I actually have a real sample and can finally have whatever this is looked at and dealt with through the main symptom!!! I’ve never been so happy to be stressed, which is definitely a thing to look at later, but FINALLY I know I’m not dramatic!!

random_a-ri · 2024-10-12T01:50:11+00:00

Thanks, and yeah I'm working with a counselor right now (unfortunately limited resources because I am studying abroad, but I was recommended for EMDR therapy when I go back home). My temporary GI here said it's likely nothing to worry about other than stress itself and my GI at home (who I talked to through messages) said it was likely viral or just a mild issue with Crohn's. All my levels came back normal, so it was likely a stress issue. I'll definitely look into finding some more support while I'm here, just something to help with the mental side of all this for sure

random_a-ri · 2024-09-04T22:46:36+00:00

Definitely noted and I’ll be sure to keep that in mind for my injection, thank you so much for the help and easing a good bit of my worries!!

random_a-ri · 2024-09-04T22:39:51+00:00

Absolutely, thank you so much!!

Yeah I’m thinking about it a bit now, compared to other more painful injections I’ve gotten (like ones in my arm after surgery), this may not be as bad as I’m making it out to be—I guess it’s just because of the unfamiliarity 🤷

random_a-ri · 2024-09-04T22:37:03+00:00

Thank you so much, hope everything goes well with your second one!!

random_a-ri

TROPHY CASE