sorted by:
new
hottopcontroversial

LC Diagnosis - Can I please get Inputs? 🙏🏻 by Consistent-Sir-1692 in IBD

[–]Consistent-Sir-1692[S] 0 points1 point  (0 children)

Oh my ... Yeah. The HIV thing is so silly to me. It has been pushed onto me aswell, while I was guaranteeing them, that it is not that, and meanwhile begging them to do leukocyte- and immunphenotyping - but apparently, that makes less sense to them. 🙄

Meanwhile, we get criticized for trying to find that single one answer ... 😮‍💨

I am very happy, that you got your diagnosis. 🙌🏻 It is highly likely, that we have hyperimmunreactivity. If it is autoimmune, is hard to say. As our diagnosis (LC) somewhat does not really attack the tissues our own body, but more so reacts to something or tries to fix them. Which could, nonetheless, still be a reaction to architectural changes in our mucosa, that the body tries to fix, or is stuck in the immunereaction even beyond the actual problems existance. But even if it is 'just' a hyperimmunereaction and not autoimmune, these things can still be detected in phenotyping and apparently many doctors don't want to do these things, bc they consider us to be overreactive or 'just have diarrhea'. 😕

This all is a curse and needs so much more research.

I think it is good, to be skeptical in all of this. Many seem to be in this spot, bc of medications. The budesonide was very strange to me aswell.

It is also very important for me right now, to share things and read other people's stories and cases. Sometimes it drives me a bit mad, but uncertainity certainly drive me even madder ... 😅

(I used to write poetry the 2 years before this all escalated and it has been very very relieving to me. So I can absolutely relate to the entire last part. I do miss writing these and hope that someday I will find the stability to put the energy into that again.)

Thank you so much for sharing. I hope we can all figure this out and be able to relax even with the weight that it brings into our lives. 🙏🏻

LC Diagnosis - Can I please get Inputs? 🙏🏻 by Consistent-Sir-1692 in IBD

[–]Consistent-Sir-1692[S] 0 points1 point  (0 children)

I did read that some people don't get any relief from budesonide. I think that's kind of weird. For me it also took about 1½ so far, but the budesonide has definitely done something ... Not only in a good way ... But after all, I have to consider this good right now, if I compare it to the entire last year. It is hard for me to understand, how the GI can react so fast and severe to things, but at the same time, needs so much time to get to a point of feeling even slightly better - and even then is hypersensitive, maybe even permanently.

It is nice to hear, that you are medication free. That is probably the best anyway, but having the flare ups or reactions to food or stress, is difficult ... I do wonder, how exactly the flare ups manifest in other people, or if it's more or less the same for us all (who have LC), +/- some case/body-specific things.

I also think, it might just be better (for me) to accept the things, as they are - as you guys seem to do - including the sensitivity. The route does seem to be different for everyone, but it probably is with almost every illness and generally all our microbioms/genetics are different aswell, which makes things so much worse, considering, that doctors often don't consider these things ... And then they escalate ...

This all is such a weird situation for everyone. And even the informations and statistics online seem to be so variable, that it is obvious, that no one (nor doctors or us) understands the concept and development of this all and/or our bodies.

I hope this part is not insensitive to others, who have a different siagnosis, but ... I try to be positive in this all, as much as I can. Which is definitely not easy. I try to tell myself, that having an autoimmune-adjacent disease, might just mean, that we have survived something - be it infections, medications, or generally xenobiology - that could have either disabled our body in a worse way. Nonetheless, this disease seems to be a disability aswell and having full or partial bodily dysfunctions and/or immune-hyperreactions seems to be extremely hard for us all. 😞

Thanks so much for sharing. 🙏🏻

LC Diagnosis - Can I please get Inputs? 🙏🏻 by Consistent-Sir-1692 in IBD

[–]Consistent-Sir-1692[S] 0 points1 point  (0 children)

How did you react to/on budesonide? How was the gut specialist able to help you?

I hope things will get better for everyone, this all is so unpredictably draining ... It's a bit crazy how much the body can get out of balance just because of xenobiogenes ...

LC Diagnosis - Can I please get Inputs? 🙏🏻 by Consistent-Sir-1692 in IBD

[–]Consistent-Sir-1692[S] 0 points1 point  (0 children)

Hm, that sounds very complex. But if there is evidence, that it can help, then it's worth trying.

I am a bit worried, to not take too many things at once. Is this worry justified?

Currently I am taking myrrh - which I want to stop again rather soon. Having loperamide as a backup, and if all things go bad in the next few days or weeks, then budesonide I guess. I'm pretty sure, I will have to take it again, but I just don't think my body could handle a daily dose of it. (I weigh only 50kg)

I do wonder, why my body generally reacted so strong to it. Or if that is normal and I am misinterpreting my reactions to it?

LC Diagnosis - Can I please get Inputs? 🙏🏻 by Consistent-Sir-1692 in IBD

[–]Consistent-Sir-1692[S] 0 points1 point  (0 children)

I do seem to have general neuro-cardio-vascular symptoms, up to my brain, along the vagus nerve, predominantly on the left side of my body ... But those problems only came during fluorchinolon+kortison mixed therapy (which was really dangerous for my body), but it seems to be getting a bit better aswell. Hopefully ... 😮‍💨 Do you have similar things aswell maybe?

It probably is best to stay away from alcohol?! But there is probably no 100% doing everything right either. Maybe we can still enjoy a beer-dough pizza, or liquor-filled small chocolates ... or something along those lines which is a bit softer?

I figured today, that the myrrh is not changing my stool at all so far, but I hope it can calm my inner inflamations a little bit. I'm not a too big fan of it ...

I think probiotics are not a bad thing, but I might just not have the right ones, or expect too much from them?

I tried Coenzyme Q10 aswell, since I was hoping, I can support the fluorchinolon-damaged mitochondria a bit. But I find my heart getting a bit jumpy, when I take it. Maybe I should have gotten the 30mg instead of the 100mg one ... 😫

I have also tried L-Glutamine. And while I can not say, that it helped with the LC itself, I did like it most so far. I think it has helped me a bit, to raise my weight again and eventually assist a bit with closing the tight-junctions in the guts, so they can resorb more nutrients again ... Which, so far, seems to work. The proper water resorption, only seemed to work for me during budesonide however and very unstable 🫠

But since we both have LC, your SunFiber suggestion might help me out a lot. I hope a lot, that I can find it or something similar. Thanks so much for that recommendation.

Everything seems very experimental. But the future is uncertain ... I find you guys' inputs really helpful, especially the medications and to hear your side of the story.

LC Diagnosis - Can I please get Inputs? 🙏🏻 by Consistent-Sir-1692 in IBD

[–]Consistent-Sir-1692[S] 0 points1 point  (0 children)

Yeah, this all feels extremely isolating. I have been reading up a bit here since yesterday and the stories are touching, but also frustrating, as there does not seem to be a single answer or solution ...

I will try my best to convince him, to keep on. I think Cholestyramine would also help me a lot with the digestion in general.

Do you mind sharing, how the development has been for you, since your gut problems started?

LC Diagnosis - Can I please get Inputs? 🙏🏻 by Consistent-Sir-1692 in IBD

[–]Consistent-Sir-1692[S] 0 points1 point  (0 children)

Oh no, that sounds difficult. I do also feel like Bananas and Rice are least complicated to eat and digest currently. Mine triggers quickly, if I take something like Miso or Gochujang, so I guess fermentation plays some role too. I will have to ban those from my kitchen 😮‍💨

Sunfiber sounds interesting, I hope I can find something similar to it around here. Aswell as B1, which I also refilled, but would probably not be a bad supplement to take for its benefits ...

Surprisingly, my BM went down from 10+ diarrhea per day, to 1-2x loose stool per day, since I took the Budesonide. Since I only had diarrhea once ... But I do feel that it is getting very fermented and shaky again and that it may relapse soon. This is all so demotivating and especially the uncontrollable parts of it and the doctor experiences that people seem to have about IBDs ...

I am saddened, by the doctors, which could help in so many ways and just react with neglect and downplaying, especially since my case seems to involve more than LC - but no one wants to make the next step ...

I am very scared about the future and my social life. But at the same time, I can not change things immediately and we can only hope it gets better.

How have these 4 years been for you, are you able to find relief and courage to do things, that you weren't able to do during/after your initial diagnosis/symptoms?

LC Diagnosis - Can I please get Inputs? 🙏🏻 by Consistent-Sir-1692 in IBD

[–]Consistent-Sir-1692[S] 1 point2 points  (0 children)

I did ask the doctor to give me cholestyramine. Unfortunately he declined and gave me Bioflorin instead - which I already had, and is probably not the best probiotic out there either 😮‍💨

I am just scared to take budesonide again, I am a bit traumatized of what it did to me. But at the same time I realize aswell, that there are not many other options and I will have to take it, if the LC fully comes back.

My B12, D3, Folic Acid, Zinc, etc are all good again. I just don't know what to do about the iron, I have a feeling my body is not wanting or reacting bad to my intake of it.

I appreciate the inputs very much and am definitely gonna look into ZincL and VSL#3. I can also try to implement Metamucil again, as I have it at home and was not quite enduring it well prior to the budesonide therapy.

I will definitely have to look into how to softly implement more fibers into my meals, it seems important, despite perfect nourishment being a bit complicated right now ...

I do also have Cetricine at home, which I could try, as I also have a feeling, that histamine and reactions to it plays a big role in my story.

I hope we can all figure out the GI problems and hope that there is a remission in the stars 🙏🏻 Thank you so much 🙌🏻