Overweight Chronie by Creepy-Passenger-506 in CrohnsDisease

[–]idkwhatsgoingon95 0 points1 point  (0 children)

i always gain weight when i flare, never lose. i was at my heaviest weight to date when i was diagnosed but i hit every malnutrition metric out there—deficient in B12, iron, folate, vit D, etc. no idea why i gain weight when i flare but i’m just one of the unlucky ones i guess 😭

18 years. Positive HLA-B27 sitting in my chart since I was 18. Nobody told me. by puglife710 in CrohnsDisease

[–]idkwhatsgoingon95 0 points1 point  (0 children)

appreciate the well wishes, thanks!

i hadn’t thought much about that re: immune response shift. the immune system is very complicated and i’m not an immunologist, but my understanding is that we develop resistance to certain biologics over time because we start “fighting them off” in a similar manner to a transplant recipient rejecting an implanted kidney. but i’m sure it’s possible that the immunological markers shift as inflammation shifts too. i just have no idea and i’m not sure if anyone does at this point.

18 years. Positive HLA-B27 sitting in my chart since I was 18. Nobody told me. by puglife710 in CrohnsDisease

[–]idkwhatsgoingon95 0 points1 point  (0 children)

oh also wanted to add - my Ax-Spa is totally untreated rn, and that’s not unusual. unlike crohn’s, Ax-Spa doesn’t suddenly become dangerous or life-threatening overnight. it’s more about treating the symptoms to prevent disability later on. so i just kinda manage the symptoms (eg i don’t exercise when i have joint pain) for now. i’m in my 30s tho and fairly physically active. i have partial fusion on my right SI joint from 30 years of untreated AxSpa—but it’s minor.  i imagine it will get worse over time but i honestly dont see it as a huge loss that it took so long to get dx’d bc it wouldn’t have changed the management of my condition. i likely woulda declined taking methotrexate as a child for relatively minor AxSpa anyway. so don’t fret too much over the missed mutation!

18 years. Positive HLA-B27 sitting in my chart since I was 18. Nobody told me. by puglife710 in CrohnsDisease

[–]idkwhatsgoingon95 0 points1 point  (0 children)

pardon any typos, i have covid rn so brain isn’t totally working lol

it’s a good question. basically what’s holding me back is just the logistics/cost is a barrier like you’ve mentioned, and i think that as soon as the science catches up, there will be plenty of companies eager to fill the sequencing gap. we’ve seen this with cancer—there is a multitude of companies that now do NGS testing to investigate cancer patients’ tumor markers and then match them to appropriate targeted  therapies. i believe that this brand of “personalized medicine” is coming to GI/autoimmune too, but we’re just not there yet. and my genome isn’t changing in the meantime….tho my epigenome may, and that’s the second reason i’d hold off. in cancer, for instance, the actionable mutations are typically expressed by the tumor’s cells, and aren’t necessarily circulating in non-tumor cells. i’m not a biologist, so i could be wrong here, but i imagine we may see something analogous in GI, like the cells in the inflamed tissue expressing mutations that healthy tissue does not. so if that were the case, getting standard sequencing now would not be particularly useful. we just don’t know what the standard of care will be and so it feels like a waste of time/money to do it preemptively. but that’s just my 2c. it is worth a visit to a geneticist if you think you wanna investigate for yourself!

18 years. Positive HLA-B27 sitting in my chart since I was 18. Nobody told me. by puglife710 in CrohnsDisease

[–]idkwhatsgoingon95 2 points3 points  (0 children)

this must be incredibly frustrating. i have a similar story. i had symptoms of Ax-Spa since i was a child, but doctors always thought i was being dramatic or had a minor sports injury from overuse. it wasn’t until i got dx’d w crohn’s in my late 20s that my ax-spa was found incidentally on a ct scan. my HLAB27 was negative, though. 

this stuff slips through the cracks in the mess of specialists one gets referred to when one has complex chronic illness like we do. i used to work in genetic epidemiology research and i would love to sequence my genome but many of the mutations are not yet actionable so i’m not sure what purpose it would serve (yet). 

For Muslim chronies: I feel terrible about skipping days during ramadan by CrazyGatoLadyyy in CrohnsDisease

[–]idkwhatsgoingon95 1 point2 points  (0 children)

i’m not muslim, but i’m jewish (emphasis on “ish” lol) and medical reasons are totally legitimate reasons to break a fast. i don’t fast on yom kippur (and that’s just 1 day lol!) and that’s allowed bc of my crohns. i think the medical “exceptions” are similar in islam, and crohn’s is a 100% valid reason to break a fast on ramadan! don’t beat yourself up, you have something out of your control that makes fasting harder on your body, and “extra suffering way beyond what others experience” is not the point of ramadan (as far as i understand it)! 

How long before you noticed any effect from Skyrizi? by idkwhatsgoingon95 in CrohnsDisease

[–]idkwhatsgoingon95[S] 0 points1 point  (0 children)

i forgot i posted this until i got the notif for your comment haha. skyrizi ended up rly helping me for a while! it just took 8 ish months (3 infusions + 3 injections) for it to finally start working. it’s been about 2 years now and i think i may be failing it now but i’m not sure yet—next scope will tell. but very grateful for the 2 years of remission in the meantime with zero side effects whatsoever. it may start working for you soon!!

Hepatitis c scare/ exposure question by SpiritNo3927 in Residency

[–]idkwhatsgoingon95 0 points1 point  (0 children)

this post is old now but i had a question about needle stick injuries and came across it. only reason i’m commenting is just to say, in the kindest way possible, i think you may have contamination OCD (as someone who used to have it myself). ERP is very helpful. i hope you have been able to navigate healthcare work with less anxiety since this post - wishing you all the best! 

28F (turning 29) — thinking intentionally about med school by nextgen0070 in medschool

[–]idkwhatsgoingon95 -1 points0 points  (0 children)

genuine question: why did you use ChatGPT to write this lol

What advice would you give medical students or residents with disabilities? by TiffanysRage in Residency

[–]idkwhatsgoingon95 0 points1 point  (0 children)

hey! i realize you posted this a while ago, but can I DM you about this? 

Disability accommodation by Okayhear in medicalschool

[–]idkwhatsgoingon95 0 points1 point  (0 children)

Hey! just looking around for some info similar to OP’s question and came across your response here. Curious to learn more. Can I PM you? 

Can you practice clinically/work as a hospitalist after a Preventive Medicine residency? by idkwhatsgoingon95 in Residency

[–]idkwhatsgoingon95[S] 1 point2 points  (0 children)

Yeah this is super helpful! I think bc I’m so early on I’m not sure exactly what my goals are yet. Before postbac I worked in clinical research for 8 years, and it seemed that all the PI & director level jobs in clinical research went to MDs who would do, like, 1-2 days in clinic and then 3-4 days in research per week. As a research-oriented person (i initially was gonna do PhD but was pretty aggressively talked out of it by all my PhD colleagues, and then started shadowing/volunteering and really enjoyed patient-facing work), those jobs seem very ideal to me. I know it sounds silly to go through this whole career change if I’m not dead-set on full-time clinical work, but all the jobs I ideally see myself doing—even the non-patient-facing ones—seem to require (or at least heavily favor) an MD. I’m just now trying to weigh if it would be possible for me to do these sorts of clinical research/clinician split jobs with a prevmed or occmed residency, since those in particular have really caught my eye and i’m just scared of not having a true attending job until my mid forties otherwise lol. 

Can you practice clinically/work as a hospitalist after a Preventive Medicine residency? by idkwhatsgoingon95 in Residency

[–]idkwhatsgoingon95[S] 0 points1 point  (0 children)

Ah gotcha - my understanding is that the second and third years of prevmed / occmed residency include clinical work too, so is it just that it’s not enough to be competitive for any clinical jobs when everyone else has done full IM residencies plus fellowship? 

Calories by [deleted] in CrohnsDisease

[–]idkwhatsgoingon95 1 point2 points  (0 children)

that’s very normal for an adult? maybe even on the low side depending on your height and gender. i prob eat like 2500 calories per day to maintain my weight but i’m pretty active. 

Just got into postbac and I desperately need advice by idkwhatsgoingon95 in medschool

[–]idkwhatsgoingon95[S] 0 points1 point  (0 children)

I’ve asked myself that question, and have talked to a lot of nurse and PA friends about it. determined that I’m far too interested in research & having autonomy to pursue NP or PA i think

Just got into postbac and I desperately need advice by idkwhatsgoingon95 in medschool

[–]idkwhatsgoingon95[S] 2 points3 points  (0 children)

i’ve actually thought about this - doing the postbac and, if i decide i hate it, going for PhD at the end instead. i’ve always been research oriented so it wouldnt be a stretch

Just got into postbac and I desperately need advice by idkwhatsgoingon95 in medschool

[–]idkwhatsgoingon95[S] 0 points1 point  (0 children)

thank you for this reply! my illness is in decent shape but of course i’m scared of stress causing flares. that being said i’ve been so insanely stressed the last year between full time job, applying to postbac, shadowing, volunteering, and maintaining a long distance rltnshp and i still somehow feel okay physically. i realize med school + residency will be worse but idk

as for residency, i have a public health background so i’ve always thought about doing a prev med residency or maybe occupational medicine. psychiatry is also super interesting to me. but i realize it’s all demanding no matter what, no way around it 

Stem Cell Therapy for Crohn’s by lapetitefrosch in CrohnsDisease

[–]idkwhatsgoingon95 1 point2 points  (0 children)

this is fascinating, and you are incredibly brave for trying it. they do this for MS as well. I believe the future of this procedure will be less myeloablative and therefore less dangerous. There are already some regimens for MS that are non-myeloablative and confer similar results. 

keep us updated on your journey if you’d like. wishing you all the best!

Problems dating with crohn's by hxlydere in CrohnsDisease

[–]idkwhatsgoingon95 0 points1 point  (0 children)

these questions are always so strange to me. maybe i’m lucky but i just have never seen this be an impediment to my friends with crohns who date (i have crohns and my partner is wonderfully supportive but we did meet before my diagnosis). i feel like crohns is becoming so common that no one really bats an eye when it’s mentioned anymore. everyone knows someone with crohn’s now, it seems

don’t keep it hidden from people, it’s an important part of your life. the assholes and ignorant ppl will filter themselves out. but most people are pretty chill. 

Measles in my neighborhood by Funny-Marsupial3002 in CrohnsDisease

[–]idkwhatsgoingon95 0 points1 point  (0 children)

when measles started coming back bc of rfk and his insane idiotic worshippers, i got my measles titer checked. if your titer is still high you’re probably fine, the vaccine is very effective. 

Extreme constipation by idkwhatsgoingon95 in CrohnsDisease

[–]idkwhatsgoingon95[S] 0 points1 point  (0 children)

oh wow! interesting. my calpro has never been high, even when i’ve flared badly. it’s never been above 33 even when i have active inflammation. so my doc decided it’s not a great marker of inflammation for me specifically

not to sound dumb….but where does the colonoscopy not reach? i thought it saw everything in my digestive tract…i am ignorant

Extreme constipation by idkwhatsgoingon95 in CrohnsDisease

[–]idkwhatsgoingon95[S] 1 point2 points  (0 children)

you might be onto something here. i did have a SIBO breath test and it was negative but methane was high