110
you are viewing a single comment's thread
view the rest of the comments
view the rest of the comments
this post was submitted on 22 Dec 2023
110 points (63.1% liked)
Ask Lemmy
27043 readers
370 users here now
A Fediverse community for open-ended, thought provoking questions
Please don't post about US Politics. If you need to do this, try !politicaldiscussion@lemmy.world
Rules: (interactive)
1) Be nice and; have fun
Doxxing, trolling, sealioning, racism, and toxicity are not welcomed in AskLemmy. Remember what your mother said: if you can't say something nice, don't say anything at all. In addition, the site-wide Lemmy.world terms of service also apply here. Please familiarize yourself with them
2) All posts must end with a '?'
This is sort of like Jeopardy. Please phrase all post titles in the form of a proper question ending with ?
3) No spam
Please do not flood the community with nonsense. Actual suspected spammers will be banned on site. No astroturfing.
4) NSFW is okay, within reason
Just remember to tag posts with either a content warning or a [NSFW] tag. Overtly sexual posts are not allowed, please direct them to either !asklemmyafterdark@lemmy.world or !asklemmynsfw@lemmynsfw.com.
NSFW comments should be restricted to posts tagged [NSFW].
5) This is not a support community.
It is not a place for 'how do I?', type questions.
If you have any questions regarding the site itself or would like to report a community, please direct them to Lemmy.world Support or email info@lemmy.world. For other questions check our partnered communities list, or use the search function.
Reminder: The terms of service apply here too.
Partnered Communities:
Logo design credit goes to: tubbadu
founded 1 year ago
MODERATORS
Crohns as well and infliximab the immunomodulator has basically had me in clinical remission after surgeries. For me it doesn't seem to be psychologically related or even diet, given that I don't just eat hot spicy foods constantly, but I eat all the "bad" foods and tolerate fiber etc. The microbiome thing seems to make sense in my case, I've had one significant flare in the last decade and it definitely had that feeling of a runaway feedback loop of inflammation. Infliximab basically binds to those inflammatory proteins and cuts that loop.
That was actually the first immunomodulator I tried and it went very well for me (I was about 14 years old when I first started it)! It led me to the closest form of remission that I have ever been in. Unfortunately, due to some bad circumstances I wasn't able to take it for over a year (might've been two now that I think about it) and I'm sure you're aware but for those who don't know, generally after being off any immunomodulator for a certain amount of time, you're not allowed to take it anymore due to the chances of building up antibodies that make it ineffective (and can lead to severe allergic reactions, including anaphylaxis).
Since then I've been on pretty much most of the other ones, I'm on Stelara now and while I've been told it's preventing more damage from occurring, it can't reverse the damage that has already been done (from things like scar tissue) - even after numerous resections it's still pretty bad for me.
However, I have noticed that when my depression isn't so active, then my symptoms aren't as bad - it's not a miracle cure by any means and still doesn't bring me to that previous point of remission, it's still enough for me to find it worth pursuing.
Of course, multiple doctors have concluded that my on-and-off depression is due to having a chronic illness, and my current psychiatrist is attempting to treat it as if I had BPD (something about the way it works chemically in my brain is probably similar to that of someone with BPD). Hopefully that gets me out of the vicious cycle of my Crohn's triggering my depression, which triggers my Crohn's in a catch-22 style loop.
I do find that I certainly have some bad foods (I really miss popcorn) but there are things that affect others supposedly that don't affect me, such as soda and other carbonated drinks (oddly enough I've heard for some Crohn's patients carbonated drinks can actually help them, so maybe I'm one of those?) - until I reach remission I just continue to try to push on trying as much as I can, since numerous GIs over the years just have zero clue on how to further help me sadly.
(They did make things significantly worse for me by having me on Prednisone for multiple years at a time, but that's another long story)
Have a prednisone horror story as well, couldn't taper off without severe withdrawal and it led to me needing emergency surgery after an ulcer rupture, which led to my resections and eventual clinical remission. Did they actually test you for antibodies against infliximab or is that just a general safety precaution they're following? I was off it for a couple months because of coverage issues but they had no problem starting me on it again and following normal infusion protocols. I think I've been on it for 15 years now. My GI specialist was one of the first in the area to start with the "top-down" approach for treatment around when I had my surgeries. Etrolizumab looked promising but the Phase III failed to deliver unfortunately, was hoping for that one if I had issues with infliximab.
They did test me for antibodies and I was positive for them sadly. That's quite a horrifying story for prednisone though, ironically I've always had a difficult time with the withdrawal symptoms from it during a taper-down of it, whereas with something like most opioids I pretty much have zero problem stopping them even abruptly, aside from a headache for a few days. For me I was never told about the long-term side effects from prolonged usage of prednisone, which I'm now being forced to deal with - an example of such is that it decayed most of the calcium/enamel in my teeth so this whole year I've had numerous root canals, fillings, and tooth extractions done and its not even over with. Honestly, I'm afraid of needing dentures before I even hit 40 (and I'm in my mid twenties)... Then there's the high chance of bone density issues, which I'm sure I'll end up with (if I don't already have such issues)... and I still have yet to shed all of the extra weight that I gained from it.
Works wonders for some people on a short term basis, but I'll never choose to be on prednisone ever again, short of some very exigent circumstances... and even then, I don't want to fall into the problem of starting it and not being able to be pulled off of it without declining again really rapidly (which is what led to me staying on it for so long).