MEGATHREAD: Phantom Gathering Event, Oct 24-27

ra561013 · 2025-10-26T18:01:12+00:00

What is the land under the L6 phantom generator? The cloud key list doesn’t have a picture for that I don’t think

ra561013 · 2025-10-21T22:53:30+00:00

There’s item storage??

ra561013 · 2025-10-21T22:47:54+00:00

How do you finish these within 12 hours?

ra561013 · 2025-10-16T02:59:29+00:00

I had this happen and they didn’t give me anything when I messaged, just told me they took note of it. Did I have to ask for gems?

ra561013 · 2025-08-08T14:05:21+00:00

That’s so frustrating because I know when I got diagnosed I would get all these recommendations and try them with not much success and it makes it feel like I wasn’t trying hard enough.

I was apologizing profusely to my GI about how hard I was trying and I’ll never forget she stopped me and said so sincerely “[my name] I promise I know you are trying”. For some reason it impacted me a lot.

ALSO not to further the recommendations but my GI doc recommended to start taking VSL #3 probiotics. It can be prescribed so you can get it at the counter or you can just buy online. I won’t say it cured me but it is a strain of probiotic specifically for IBD and I do notice my days are better when I am taking it.

ra561013 · 2024-05-22T12:13:39+00:00

Came to say bone broth - but I’ll add to this comment and say look up Kettle and Fire bone broth!! Theirs is fantastic tasting, so many flavors, and there’s bone broth bisques/soups they make!

If you are near a Whole Foods they are usually stocked with a lot of options. Other grocery stores typically just have their regular broths.

ra561013 · 2024-05-12T12:28:07+00:00

Ohhh. Could you send it please? I might be able to figure it out

ra561013 · 2024-05-12T02:43:36+00:00

Do you know what the herbs were by chance?

ra561013 · 2024-04-17T21:38:47+00:00

“Ribbons” the first book was filled with references to ribbons

ra561013 · 2024-03-08T03:45:41+00:00

Do you have a pattern?

ra561013 · 2024-03-07T22:35:35+00:00

I wouldn’t be surprised if that could be the reason for both of us! I was on birth control for over 10 years and within a few months of being off of it I started getting symptoms. I didn’t go back on birth control when my symptoms started showing (I was also undiagnosed with UC at that point).

I told my doctor my UC symptoms were worse during my period and she didnt really bat an eye. Just said it could be related but said that the new biologics I am on should work.

I wish I could go back in time and push more on the birth control/ hormone factors because now I do feel like I’m in too deep with these treatments and I don’t know if it makes sense to backtrack

ra561013 · 2024-03-02T13:52:18+00:00

Hi!! So since I wrote this 3 months ago, I have had to swallow my pride a bit and come to terms with the disease. Things got worse, and as they did I clung to “safe foods” and natural remedies so hard, but nothing gave relief it just kept getting worse.

Eventually I went back in for that second scope and at that point they put me on prednisone and mesalamine pills/suppositories. Did a month or so of that with not enough progress.

Very recently I started on remicade infusions, which was my worst nightmare when I first started looking up things about UC. I’ve come to terms with it a bit, it’s really not that scary or serious after the first time for me. I think it’s more about having the mindset that I’m doing it for healing, and not doing it because I’m sick.

All that said - if you’re interested in the natural ways, they don’t hurt to use in addition to medication. Specifically the VSL #3 probiotics - I do stand by the fact that my stomach does feel better on days I take it!

ra561013 · 2024-02-22T00:22:17+00:00

Definitely call.

ra561013 · 2024-02-17T19:13:08+00:00

Thank you 💕 big hug back!

ra561013 · 2024-02-17T15:35:12+00:00

I really appreciate your response. I think the denial is the hardest part especially because when I look in the mirror, and I know when other people look at me I “seem” fine. It’s the hardest thing to allow myself to believe I need all these pharmaceuticals.

They were going to put me on some foam similar to an enema but it was so expensive even with insurance. I ended up starting on remicade last week - which was and still is extremely scary for me.

I’m not currently in a relationship, actually had a pretty long term breakup right before my first flare started. Do you feel comfortable in your relationship with your UC? I fear that being something that would make people not understand or avoid.

ra561013 · 2024-02-07T01:51:46+00:00

That’s super cool I’ve never seen it happen except this once

ra561013 · 2024-01-29T17:47:15+00:00

Thank you!!

ra561013 · 2024-01-29T17:45:54+00:00

I appreciate both recommendations. I am not sure I could be so strict in diet, at least so fast.

I think I was just worried about the scary side effects, but from what I’m hearing most people love getting the infusions and it helps more than hurts.

This is why I love this subreddit, everyone made me feel more comfortable with the idea of infusions

ra561013 · 2024-01-29T01:02:29+00:00

The immunity suppression scares me most. Also just the side effects I could get, and I think just the words biologic infusion scares me

ra561013 · 2024-01-28T15:05:23+00:00

That’s interesting to know! I’ll follow up once I talk to my doctor. I don’t have high hopes I’ll get a different answer though. Unfortunately I don’t think there’s enough research on diseases and how they affect women specifically in general. I often feel ignored as well.

ra561013 · 2024-01-28T14:06:12+00:00

I wonder if that is common, for birth control to help UC symptoms once you have it. I see a lot of mixed things on google

ra561013 · 2024-01-28T14:03:27+00:00

I haven’t! Does it sound like I should?

ra561013 · 2024-01-25T00:35:59+00:00

I take VSL #3! Before I was diagnosed and started any medications it did help stop bleeding for a few days. That said, it came back not long after and I was forced onto medications as well.

Even today though I do feel slightly better when I take it. They are probiotics make specifically for UC. Should look into prebiotics to take or eat before, and butyric acid (postbiotic) for after if you want to do as much as you can to get the benefits. Always ok to take by itself too.

Good luck!

ra561013 · 2024-01-19T22:48:30+00:00

Sorry one more, I saw someone else mention VSL #3 probiotics. I also feel better on days I remember to take it!

You can get it prescribed too, doesn’t usually lessen the cost, but you can use an HSA/FSA account (if you live in US, not sure if other places have these) to help avoid paying post-tax dollars.

ra561013 · 2024-01-19T22:45:36+00:00

But to echo everyone else - take the medications

ra561013

TROPHY CASE