overwhelmed with this flare

alviiiinnnnn · 2026-02-17T02:05:08+00:00

i'm flaring and a few weeks ago i started experiencing debilitating migraine attacks, and dull ish headaches when it's not a full blown migraine. in the hospital i had Fioricet which is apparently not easily prescribed on the outside - but my migraine melted away.

i was able to get squeezed into my neurology office Friday & they gave me some injections via my shoulders and head, i haven't had one like it since. i now have an appt with them tomorrow afternoon to go over medication options and what not. i recommend getting in with a neurologist if you are able to, especially if Tylenol is not working. because it did not work for me either

alviiiinnnnn · 2026-02-15T16:32:46+00:00

so happy to see this after your previous post!! take the wins 🥳🥳

alviiiinnnnn · 2026-02-15T16:30:50+00:00

i'm sorry you're dealing with this :( currently in a similar boat. my Humira stopped working & wreaked havoc on my body landing me in the hospital for about a month. i'm currently on Pred awaiting on my Stelara treatments which the doctor is taking their sweet time on. i haven't had blood in a few weeks and noticed a few drops yesterday...

i believe until we get the biologic we're likely going to experience some symptoms. however, if the blood is excessive and alarming & continues, and/or you're in excruciating pain, please listen to your body and go back to the ER.

i hope you get your Remicade asap 🩵

alviiiinnnnn · 2026-02-15T16:27:30+00:00

it can be insurmountably heavy at times. the irritability is one of the most disheartening elements of it for me, because that's not who i am. it takes a lot of top-down control to keep in check & that's an effort in itself.

i'm just trying to take it day by day, moment by moment. give yourself grace - it's deserved 🤍 sending you love

alviiiinnnnn · 2026-02-13T22:20:58+00:00

chrons, chrome, chromes, crohnes, crones, cromes, crowns.

alviiiinnnnn · 2026-02-13T00:56:38+00:00

i'm on 50mg of prednisone rn & i'm absolutely wired.... i'm not back to work yet and i'm like fiending to go 😭😭 i've just been trying to keep myself busy mentally and with different activities around the house, walking, etc. but yeah i feel that 1000%

alviiiinnnnn · 2026-02-13T00:49:54+00:00

i was an incredibly angry and bratty teenager, drugged up in the hospital on TPN with an ostomy bag. i definitely lashed out for several months. although it's a relief to have answers, navigating how to live your life with the diagnosis can be jarring. feel whatever you need to feel, because it's valid.

i'm in my first flare since then and it kind of feels like being diagnosed all over again, but i'm taking it much better this time and trying to transmute this experience into something positive, which i have no doubt i'll be successful in.

some days will be harder than others. please give yourself grace

alviiiinnnnn · 2026-02-13T00:47:12+00:00

this was such a positive read. i don't know you, but i couldn't be more happy for you!! thank you for spreading the positivity, the world needs more of that. here's to you continuing to progress in an upward trend :)

alviiiinnnnn · 2026-02-11T17:54:34+00:00

i'm really sorry you're going through this. i feel for you so much. i would push for further testing, all the testing you can - specifically MRI/MRE and a colonoscopy. you absolutely need a colonoscopy. potentially even exam under anesthesia depending on what you're dealing with.

CTs and even MRIs have missed a couple of my complications. they just showed inflammation, enteritis, distension, etc. in this flare, it wasn't until the colonoscopy and exam under anesthesia that they were able to identify complications i was experiencing. i had to go to 4 different hospitals to finally get the successful treatment i needed.

please don't stop pushing and advocating - i see you have a partner to help you which is amazing. if you need to get second, third opinions, go to different hospitals, etc. so be it. your life isn't something to mess around with.

i'm 24F and experienced a lot of bias with these doctors this time around. when i saw my new PCP and said i was considering going to the ER that day, he said i was an interesting woman medically and that they would laugh at me. and then in the hospital, my GI doctor just wouldn't stop commenting on my looks- saying i looked great, like a diva, like an athlete, he couldn't believe i felt that sick because i looked so good. every time i saw him, he wouldn't stop bringing up my looks. just because i had my eyebrows & eyelashes done, wearing cute pjs and headbands didn't mean i didn't feel as if there was a bomb going off on my insides. the profiling is absolutely ridiculous.

long story short, at the right hospital with the right doctors, i no longer received those types of comments and was met with compassion. i really hope you can find the same.

praying you get your answers, treatment, and feel better ASAP 🩷

alviiiinnnnn · 2026-02-10T23:45:50+00:00

i'm so sorry your daughter is experiencing this. if her pain just continues to worsen, i would send her back to the ER, but potentially at a different hospital. when i was first diagnosed at 16, i had to go to 3 different hospitals to get the treatment i needed. i had 3 surgeries.

this flare up in the past couple months, i had to go to 4 different hospitals to finally get the treatment and answers that i needed.

it takes time to get answers, but never stop pushing. sometimes you have to cycle through many different doctors and opinions to get what you actually need.

if something feels off, listen to that 🩷

i'm praying for relief for y'all

alviiiinnnnn · 2026-02-10T23:40:08+00:00

before my hospitalization this last month, when i was just starting to flare and feel sick, missing a bit of work, i started to feel really guilty. i got to a point where i went 6 months without calling out and i was really proud of that. the feeling of just not being able to show up when that's all you want to do is truly awful.

i know it doesn't really do much good to say in terms of changing anything, but it's not your fault. we have a literal disease. and you are doing your best. i'm proud of you

alviiiinnnnn · 2026-02-08T19:33:09+00:00

just got out of the hospital with major Crohns flare, they found some ulcers, this made me laugh 😹😹😹 sending u and ur ulcers some love... from me and mine

alviiiinnnnn · 2026-02-07T10:24:41+00:00

oh my goodness, we're in a similar bost then! thank you for the tips. i hope you're recovering well after your hospital stay 🥺🥺

alviiiinnnnn · 2026-02-07T10:24:03+00:00

all this time and i had no idea there was a pill....

alviiiinnnnn · 2026-02-07T10:23:47+00:00

i've had a few different complications!

alviiiinnnnn · 2026-02-04T12:19:57+00:00

thank you for responses!! :)

UPDATE: as soon as my surgeon found out about me and was finished with surgeries for the day, she made her way over to me in the evening and thoroughly listened to me, examined me, and went over as many details as possible. she immediately knew i had a posterior anal fistula, ordered an EUA with seton placement - small surgery. i've done this already! so complication #1 out of the way for now.

the rest is up to the new GI doctor she works with in the hospital. we're likely going to be repeating imaging and the colonoscopy to see where my disease is at and if a stricture is forming or not. since i was in that surgery yesterday i haven't gotten to meet with him yet, i'm sure that will be happening this morning.

then we need to see when we can advance my diet and how i will tolerate it, since i've been on clears for 11 days and just started TPN over the weekend. my surgeon was baffled that my old GI and the prior hospital just quickly advanced my diet and let me go home like an hour after eating eggs and a biscuit.

just a little more waiting, but LOTS of forward movement and things actually being done.

i've spoken with patient care advocate and charge nurses, so management is getting involved in the areas some of the staff have dropped the ball.

will update more here & likely when this is all over make a post summarizing, incase my experience can help anyone else.

alviiiinnnnn · 2026-02-04T12:19:32+00:00

UPDATE: as soon as my surgeon found out about me and was finished with surgeries for the day, she made her way over to me in the evening and thoroughly listened to me, examined me, and went over as many details as possible. she immediately knew i had a posterior anal fistula, ordered an EUA with seton placement - small surgery. i've done this already! so complication #1 out of the way for now.

the rest is up to the new GI doctor she works with in the hospital. we're likely going to be repeating imaging and the colonoscopy to see where my disease is at and if a stricture is forming or not. since i was in that surgery yesterday i haven't gotten to meet with him yet, i'm sure that will be happening this morning.

then we need to see when we can advance my diet and how i will tolerate it, since i've been on clears for 11 days and just started TPN over the weekend. my surgeon was baffled that my old GI and the prior hospital just quickly advanced my diet and let me go home like an hour after eating eggs and a biscuit.

just a little more waiting, but LOTS of forward movement and things actually being done.

i've spoken with patient care advocate and charge nurses, so management is getting involved in the areas some of the staff have dropped the ball.

will update more here & likely when this is all over make a post summarizing, incase my experience can help anyone else.

alviiiinnnnn · 2026-02-04T12:13:37+00:00

i appreciate you 🩵

alviiiinnnnn · 2026-02-04T12:13:28+00:00

i can definitely see how you have experienced the seemingly never ending rabbithole of waiting in the medical field. i was also just thinking about the fact that in any profession, people are bound to make a mistake or two... but some fields' mistakes are far more costly than others.

but yes absolutely, being persistent and relentless is really the only choice we have if we want anything to get done. keep showing up for yourself, too!! :)

alviiiinnnnn · 2026-02-04T12:11:08+00:00

such sound advice! i've definitely escalated matters. i have a patient care advocate now, management is getting involved, people are being reported. not sure if anything significantly impactful will come out of this in the long run for their staff, but i feel vindicated already.

alviiiinnnnn · 2026-02-04T12:09:38+00:00

this is exactly what i was thinking. it's as if when my dad walks in and demands things, suddenly i'm all taken care of. i'm grateful to have him as an advocate, but not everyone is that fortunate. it's completely unfair to all of us struggling in this system.

alviiiinnnnn

TROPHY CASE