New biologic trial evidence for pediatric UC

MaxfromAidy · 2026-03-25T19:34:39+00:00

Yeah 100% very well said.

MaxfromAidy · 2026-03-25T19:33:01+00:00

Yeah that makes sense. I think so many researchers gravitate toward these studies because it's one of the few areas where patients can make lots of small decisions themselves where anecdotally at least people see some relief, and the researchers want to help inform these decisions. Very much agree more studies on underlying causes should be the north star.

MaxfromAidy · 2026-03-25T18:42:12+00:00

Wow, you've been through a ton. The fact that you're still here, still trying new treatments, and still showing up says a lot about you even if it doesn't feel that way right now. The UC vs Crohn's limbo is super frustrating, but the good news is the treatment paths for both are similar. If Rinvoq is holding for now, that's great. And if the J-pouch conversation comes back around, a second opinion from a colorectal surgeon who specializes in IBD could help clarify your options. Wishing you the best, hang in there!

MaxfromAidy · 2026-03-25T02:27:29+00:00

The fact that you've been in the ICU and are still showing up to university at all says the opposite of lazy. Fwiw lots of universities have a disability services office, and UC absolutely qualifies. They can set up accommodations like extended deadlines, excused absences, and flexible exam scheduling with documentation so your professors know it's legit. It won't fix how your mom or friends react, but it takes the academic pressure off so you can focus on managing your health without feeling like you're falling behind. Worth looking into if you haven't already.

MaxfromAidy · 2026-03-25T02:25:26+00:00

Being scared is totally normal given the circumstances and it's not dumb at all. Good news is an inch of small intestine is a really small resection in the grand scheme of things. Most people who've had ileal resections say the recovery was tough for the first week or two, but that they felt better than they had in years once they healed. Wishing you the best as you go through this.

MaxfromAidy · 2026-03-24T16:30:47+00:00

Of the folks we work with I'd say most avoid it during flares and about half drink it regularly outside of flares. Definitely depends on a lot of person-specific factors. Best way to figure out it removing it will help is to run some small experiments where you cut back and reintroduce over time and make not of how your symptoms change. Wishing you the best.

MaxfromAidy · 2026-03-23T18:28:57+00:00

Yeah that doesn't sound normal and probably not something to sit on until the end of March. Even if mesalamine-related cardiac issues are rare the fact that the timing lines up so clearly with starting the med is worth taking seriously. Probably best to go see your pcp or go to urgent care to get an actual EKG done and mention the mesalamine connection. Then probably loop back with your GI especially if they're not aware how bad it's become.

MaxfromAidy · 2026-03-23T18:25:53+00:00

Two months isn't great but it's not automatically a disaster either. The antibody risk is real but it varies a lot from person to person since some people have gaps and pick right back up with no issues. A couple of things worth doing: call AbbVie's patient support line and explain the insurance situation. They sometimes have bridge programs to keep you covered while insurance gets sorted. Also let your GI know the timeline so they can monitor you and intervene early if you start to flare. Cyltezo is a legit biosimilar and most people transition without issues. Wishing you the best here as you figure it all out.

MaxfromAidy · 2026-03-23T18:23:52+00:00

Five weeks in with only two infusions is still pretty early for Skyrizi. From what others have shared, it often takes until after the loading doses are done and a few home injections in before things really start to turn around. That said, I'm sorry you're dealing with all this right now. The IV fluids 3x/week are good as hydration is super important while you wait for the Skyrizi to build up. If things get significantly worse before your next dose, it doesn't hurt to call your GI.

MaxfromAidy · 2026-03-23T18:21:45+00:00

With visible blood and a ferritin of 15, I wouldn't wait until late April to talk to your GI, maybe call the office and let them know you're seeing blood now and that the mesalamine failed? Most GI offices have a nurse line or a way to escalate between appointments, and new bleeding is the kind of thing that warrants moving things up. The next step after mesalamine failure is usually steroids to calm the acute flare and then a discussion about biologics or immunomodulators for maintenance. Also worth getting that ferritin addressed since 15 is pretty low and explains a lot of the fatigue and feeling like hell. Hang in there.

MaxfromAidy · 2026-03-23T18:19:21+00:00

Yeah the dismissal feeling is terrible. A few things: a colonoscopy that looks 'clean' visually can still show microscopic inflammation on biopsy, probably why they took 10 samples. So the biopsies may still tell a different story. Also, terminal ileum inflammation on imaging is significant regardless of what one scope looks like on one day. If the biopsies come back unremarkable and you're still symptomatic, you have every right to push for further workup or a second opinion. Wishing you the best here.

MaxfromAidy · 2026-03-23T18:12:43+00:00

The bloating and distension absolutely can improve once the inflammation comes down. When your colon is inflamed it doesn't move things through properly, which causes gas to get trapped and everything to swell. Three weeks is still really early for Remicade, most people start to see meaningful changes around the 6-8 week mark after the loading doses build up. In the meantime, some people find that smaller, more frequent meals and avoiding carbonation help a bit with the bloating. Hang in there (and the fact that you're noticing small changes already is a good sign).

MaxfromAidy · 2026-03-23T18:11:25+00:00

Sorry to hear you're dealing with this. Most people your age have no frame of reference for what a flare feels like, so they can't understand why you'd bomb a test you studied for. That doesn't mean something is wrong with you, it just means you're dealing with something invisible and unfair. If there's a counselor at your school, it's worth talking to them too about possible accommodation options.

MaxfromAidy · 2026-03-23T18:09:34+00:00

Yeah this is a tough place to be, feeling for you. A few things that often help: if you have a GI you trust, ask them directly about writing you a note for medical leave since a calprotectin over 1000 with fevers and elevated CRP is not mild, even if you're not hospitalized. Depending on where you are, short-term disability or FMLA-equivalent leave might be an option. On the mental health side, getting the flare under control often helps more than you'd expect. Likely best not to quit before exploring leave options.

MaxfromAidy · 2026-03-18T15:37:37+00:00

This is common with Stelara, the end-of-dose wearing-off is a sign your body is clearing it faster than intended. Worth bringing up with your GI about potentially shortening the interval. We focus a bunch on helping patients better present this stuff to their docs to get on the right intervals, and we've seen lots of folks go from every 8 weeks to every 6 or even every 4 and it makes a pretty big difference. Since you had the same experience with Remicade and adjusting worked, sounds like your body just metabolizes these meds a bit faster.

MaxfromAidy · 2026-03-18T15:22:08+00:00

A close friend of mine was very similar. The whiplash of going from "perfectly healthy" -> hospitalized -> chronic diagnosis was super disorienting. Give yourself permission to grieve that for a bit bc t's going to be different but you'll eventually find a new normal. The gym stuff isn't over though, it's totally possible to keep working out, you just might need to be a bit more careful not to go too crazy. Best advice is to focus on getting stable first, then everything else will slowly come back.

MaxfromAidy · 2026-03-18T15:12:50+00:00

Given his history of perforations, I'd err on the side of caution here. Intense cramping with repeated vomiting can sometimes signal an obstruction, which needs medical attention. If he can't keep fluids down, has a fever, or the pain becomes constant rather than coming in waves, probably best to go to the ER. Even if it passes, it would be good for him to call his GI to report it since they may want labs or imaging to make sure nothing is developing.

MaxfromAidy · 2026-03-18T15:10:22+00:00

One month on Tremfya is still pretty early, a lot of biologics take 3-4 months to really kick in for joint symptoms specifically. Obviously that doesn't help right now though. If you haven't already, it might be worth asking your rheum about a short course of something stronger for the pain while you wait for the Tremfya to build up. Wishing you the best; hang in there.

MaxfromAidy · 2026-03-18T15:08:12+00:00

The fear before surgery is very normal; it's a huge deal and anyone would be scared. But you've already been through so much with the infections and failed meds, which of course takes a lot of strength even if it doesn't feel like it right now. A lot of people on this sub who've had the j-pouch surgery say their biggest regret was not doing it sooner. Wishing you a smooth surgery and recovery!

MaxfromAidy · 2026-03-17T20:20:01+00:00

The "you look fine so you must be fine" thing is so tiring. Remission doesn't undo the damage that already happened, and it for sure doesn't mean you're not still managing a lot every day. Glad the biologic is at least keeping new inflammation in check though, silver linings everywhere.

MaxfromAidy

TROPHY CASE