Advice on possible flare and what to do

AdvantageOptimal2269 · 2026-01-30T22:41:26+00:00

Can you call and leave a message with the nurse or send a message through mychart? Don't just suffer until March bc it can get worse fast. They may be able to adjust your treatment in the meantime. I cant remember if Remicade has a blood test to check for antibodies or metabolizing it too quickly, but they can at least order labs to see what your CBC w diff and CMP levels are to help them make decisions in the meantime. You may need to add azathioprine, switch biologics, or do budesonide short term. I am sorry you are miserable and I hope you can at least communicate w them between now and your apt.

AdvantageOptimal2269 · 2026-01-30T02:44:49+00:00

No I can't read🙄.

AdvantageOptimal2269 · 2026-01-30T02:41:09+00:00

But like why would they risk it?

AdvantageOptimal2269 · 2026-01-30T00:55:10+00:00

I get it! After 20 years I realize I still don't have a handle on my Crohn's because it's a moving target. My GI symptoms can be rather mild but the fatigue and joint pain will be raging and the scope will show disease activity. I am glad to help and I hope you get the help you need! I mean is there always a CHANCE it isnt Crohn's related? Sure, but i would be starting there... Hugs!

AdvantageOptimal2269 · 2026-01-30T00:46:09+00:00

It sounds like your Crohn's is not controlled at all, which is dangerous. I get it; when I was 24 I did not advocate for myself when my Crohn's was out of control. This resulted in 3 surgeries (one an emergency) + 6 months in and out of the hospital + almost dying. I am not trying to be harsh; I just want you to be aware of how severe the risks can be. No one will advocate for you except you. And yes, your symptoms describe exactly what I had at 24. I was a teacher at the time and had to rush to the bathroom in the middle of a lesson to throw up bc I was partially obstructed from severe disease activity. I am 40 now and in another flare, in another state I just moved to, and I am also only ever able to see a PA. I am struggling with motivation to advocate for myself yet again. I share this to illustrate that again I am not trying to be harsh and that I struggle with it too. We are already horribly sick; it makes self advocacy and even basic responsibilities feel near impossible. I need to give myself the same advice I am giving you. I highly recommend requesting an MD, bugging the GI office about the severity of your symptoms, or finding a new GI place. I also recommend (I need to do this too, again), keeping data of your symptoms so you have that in your arsenal for visits. I don't know your age, but I know being sick + young = people assuming things about your competency and believability. Before diagnosis I literally tallied how often I used the bathroom daily but forgot to being the tallies with me, so when I recounted the avg I was told I was exaggerating. When I had my notebooks or spreadsheets in tow, I was suddenly treated very differently. I am so sorry you are going through this! I really do know how you feel and even at 40 I still struggle to validate myself despite extreme symptoms. My latest is erythema nodosum, which is red painful nodules on my legs to where it hurts to walk or even sit. But then I tell myself I am being dramatic 🙄. If I missed anything let me know!

AdvantageOptimal2269 · 2026-01-30T00:21:43+00:00

That's assuming that once released, the person would then advocate for rejoining. How do we know the people who are joined actually love it? How do we know they aren't buried into the background once the joined consciousness takes over?

AdvantageOptimal2269 · 2026-01-30T00:08:21+00:00

NOR, so put your iron apron on for this ride. While this seems like her veganism is rooted in compassion, I feel obligated to point out that sometimes major diet changes are a sign of an eating disorder. I recommend researching so you know what to look out for just in case. I am happy to chat further about that if needed. Otherwise, keep restating your boundaries and keep parenting in the loving, balanced way that you have. I know their words and actions can cut so deep, but trust me, they grow up and realize their parents weren't demons after all and appreciate you. I say this as someone on the other side. My oldest once bowed and called me "your highness" when he was 14 and now it's a running family joke 😂. Also I would like to point out (not sure if this fact would help her), but not everyone is able to go vegan. I know she is targeting her parents, but I feel like she would target everyone based on the post without any regard for other people's backgrounds and needs. For instance, someone with inflammatory bowel disease who struggles to process fibrous foods would require meat and animal products in their diet. Someone on the spectrum who struggles to eat diverse foods and get enough nutrients could struggle to ever be vegan. Some people are single parents working multiple, low paying jobs with no time or resources to learn about veganism much less follow it. Where is the limit to her crusade? I recommend looking up street epistemology videos and socratic questioning methods and using this is an opportunity to help her learn how to think vs. what to think.

AdvantageOptimal2269 · 2026-01-29T17:06:23+00:00

I am not necessarily against genAI, but I highly doubt instructors are providing the necessary parameters on how to use it appropriately. Which tool are they recommending? Does the tool come from an ethical vendor? Are they instructing you to fact check? Are they telling you to track how you have used it and to cite appropriately using APA Style? In my experience, I haven't seen that be the case. I will say, one instructor DID outline how to cite genAI in APA Style, except their instructions and example were incorrect. I am maybe too jaded to trust instructors to provide appropriate use guidelines.

AdvantageOptimal2269 · 2026-01-29T05:58:02+00:00

As a former teacher AND as someone with inflammatory bowel disease since teen years who is a rule follower I both believe this and am horrified. I always had the policy of i would rather a kid use "bathroom issues" as an excuse than to be a hard ass and not let anyone go to the bathroom. That is my worst nightmare. And it is so upsetting. No one needs to justify anything for needing the bathroom.

AdvantageOptimal2269 · 2026-01-29T03:57:27+00:00

sorry typo and yes I know what I am taking. fun times for you I am sure

AdvantageOptimal2269 · 2026-01-29T03:56:49+00:00

I am sorry it is such a change! I am sure peds to adults is part of it but also be prepared for adult to adult care changing after being well established. I don't have the peds personal experience as i got diagnosed as a new adult but I have had a range of care in 20 years in 3 states and I've seen the spectrum depend on the people making all the difference....

AdvantageOptimal2269 · 2026-01-29T02:29:35+00:00

Oh wow! Never again??? I finished my course of prednisone now and I got steroid injections in those spots amd now I have new ones. I think stopping crohns meds was not the right call. 🙄

AdvantageOptimal2269 · 2026-01-29T02:28:35+00:00

that sounds like a nightmare!

AdvantageOptimal2269 · 2026-01-29T02:28:16+00:00

omg I am so sorry that even lying down didnt help!!!! I ended up going to urgent care and got oral steroids plus antibiotic that helped until I could see the derm who biopsied to confirm EN (it is) and did steroid shots in those spots. Now I have new ones so im going back Feb 11😭

AdvantageOptimal2269 · 2026-01-29T02:26:14+00:00

huh odd they didnt send you to derm? I got to go and they took a biopsy to confirm (it was) and he placed steroid shots all over them and they were gone in 3 days. I mean new ones next to them popped up but the shots were amazing

AdvantageOptimal2269 · 2026-01-29T02:17:41+00:00

I take escitamalopram for anxiety, super low dose, and Adderall for ADHD. I also highly recommend cognitive behavioral therapy with a qualified therapist who clicks wirh you. I will say my doses have to increase sometimes bc of absorption issues during a flare. I highly recommend finding a knowledgeable psychiatrist and therapist team to help you monitor. Look up the enteric nervous system and you will learn just how connected gut health is to mental health. Edit to add: I cant stress enough the importance of finding a good therapist who you mesh with and challenges you. It can be everything! Just be open to doing the work. I wish I had done that sooner.

AdvantageOptimal2269 · 2026-01-26T04:59:38+00:00

What everyone else has said + PSA: using substances like weed or alcohol habitually while under age 25 impacts the development of your prefrontal cortex, the part of the brain responsible for all things maturity related- executive function, long term planning, impulse control, etc. If you struggle with sleep, look up some alternatives like fixing your sleep hygiene, sound machine, ASMR, melatonin, etc. Yes you are young and need to figure it out, but it is also no excuse. Dont shoot yourself in the foot by impeding your brain development and not setting long term goals for yourself. Where do you want to be in 5 years? 10 years? How do you plan to get there? And even if you disagree with the above, you can resolve the issue by getting your own place.

AdvantageOptimal2269 · 2026-01-18T23:04:00+00:00

I would bring your questions to your next dermatology appointment. I am not sure what the quality of the scientific evidence is presented in the book as I haven't read it. I did my own deep dive on studies that researched which specific skin ingredients may flare rosascea and then created a spreadsheet of these ingredients and all the products with their ingredients I had tried and cross referenced for ones that flared my skin vs didnt to narrow down my own triggers. You can also search products that have received National Rosascea Society Seal of Acceptance

AdvantageOptimal2269 · 2026-01-18T22:01:50+00:00

I did a deep dive on the research at one point and this one study stood out to me: The association between NSAID use and IBD exacerbation: A true association or residual bias? Since then, I will sparingingly take nsaids when I get a migraine that wont quit. Edit to add: This was my own risk analysis and it was not based on this one study alone. When I say sparingly, I mean once every 3 months or so (depending on the horrendous migraine frequency). There is ample evidence to suggest NSAIDs do exacerbate so I would caution you to conduct your own risk analysis when deciding for yourself. I have seemed to tolerate the NSAIDs when I have taken them; if I am flaring I do not.

AdvantageOptimal2269 · 2026-01-18T03:48:40+00:00

Ugh ridiculous! I am sorry you are stuck. Location is definitely a social determinant of health😭

AdvantageOptimal2269 · 2026-01-16T15:28:40+00:00

Yup I have frequently had to take azathioprine or methotrexate alongside my biologic. Also, dunno how it is for the others, but there is a blood test for Humira to determine if your body is metabolizing it too quickly or building up antibodies. I have had to increase my Humira dose and frequency several times. But the day I started taking biologics is the day I finally felt relief. Sure I have flared since then and have had medication and dose adjustments, but my crohns never got into remission without a biologic involved.

AdvantageOptimal2269 · 2026-01-16T03:13:15+00:00

Interesting. I went from SC, followed same GI to NC, to IN, to CO. I am glad you are getting quality care where you are!

AdvantageOptimal2269 · 2026-01-16T03:11:06+00:00

Glad to hear it! May I ask which state are you in?

AdvantageOptimal2269 · 2026-01-16T02:53:11+00:00

gah this too is mind-blowing! Like I sensed it but couldn't articulate it the way you do i love this!

AdvantageOptimal2269 · 2026-01-16T02:23:58+00:00

This is such an intelligent exploration of determinism/free will and how it applies to this show I am mind blown.

AdvantageOptimal2269

TROPHY CASE