c0smon4ut

joined 10 months ago
3
submitted 2 months ago* (last edited 2 months ago) by c0smon4ut@lemm.ee to c/crohnsandcolitis@lemmy.world
 

Hey y’all!

I had a post recently about abdominal pain and might’ve found the answer.

I received an email from Evinature stating that some folks have a “delayed allergic reaction to CurQD.” It went on to say, “If you experience a new abdominal pain, especially in the next six weeks that is distinct from any discomfort you have felt previously… Stop taking CurQD.”

This lines up with what I felt. About 3 weeks into taking it I experienced severe abdominal pain that almost sent me to the hospital. But I didn’t stop taking it because I’d been taking it for a few weeks without any issue and my UC symptoms had improved: no blood, no mucus, solid stools…

I emailed their clinical team and I’ve also sent a note to my GI PA. I inquired if this is a temporary thing the body acclimates to or not. The pain I’ve been having has been ebbing.

I’m honestly so discouraged. I don’t trust the GI team anymore because any time I have an unexplained symptom they just say, “well it’s probably IBS.” It’s not fucking IBS. I had so much hope this was working. I’m so confused about how my body can have a “delayed allergic reaction” and also still be working. I just… idk anymore.

Update:

Evinature Support got back to me quickly (faster than the actual doctor), and is sending a complimentary bottle of Cura.

The CurQD product contains two key components: Qing Dai and Curcumin. The Qing Dai is the supplement some folks have reacted negatively to. Cura only contains Curcumin, which is the anti-inflammatory compound in turmeric/ginger and is not something my body is going to freak out from.

They’ve advised I stop CurQD for 2 weeks, use the Cura to make sure I don’t backslide, or backslide very little, and then we’ll see about trying again.

At least there’s still some hope.

[–] c0smon4ut@lemm.ee 1 points 2 months ago

Thanks for your reply! I appreciate hearing your story and insight.

 

Hey y’all. I posted a few weeks ago about being discouraged after a recent colonoscopy that showed despite being on oral and suppository mesalamine that I was still showing ulcers in my colon (proctitis). However, at the time of the colonoscopy, the UC hadn’t spread anywhere. So that’s good news!

One thing I did is stopped taking my SSRIs and went through about 3 weeks of withdrawal. This was a planned thing, I know stopping an SSRI can be risky but I was getting withdrawal symptoms after just 12 hours or a missed dose and I didn’t need them anymore for anxiety/depression.

I had also started the Evinature CurQD supplement and my UC symptoms are pretty much all gone. No blood, no mucus, no liquid bowel movements.

But right after I was done withdrawing from the SSRI, this would be three weeks post-colonoscopy, a little more than 3 weeks since starting the CurQD, I thought things might start evening out. There were some rough GI issues withdrawing from the SSRIs but they were short lived and I knew that would happen.

But things didn’t even out.

Instead, I started getting bloated and having a lot of abdominal cramping. The pain was pretty severe, so much so I really considered going to the hospital. My GI PA ordered a CT and I did that. All they found was a slight thickening of the colon wall in the sigmoid, descending, and transverse colon.

So my question now is: I think the UC is under control using the CurQD protocol. But is healing also painful? Like how do the ulcers heal? Do they scab? Is the pain here just part of the healing process? I’d find it hard to believe that within 3 weeks of the colonoscopy that the UC somehow spread so far up my colon almost instantly.

The GI PA also described Bentyl. He thinks I have both UC and IBS-D. So I just started taking that a couple days ago.

I’m just on so many meds now I’m having a hard time keeping track of what is a symptom of the disease and what’s a side effect.

Curious y’all’s experience getting out of a flare and into remission.

[–] c0smon4ut@lemm.ee 2 points 3 months ago

I wanted to follow up to say that one week ago I started taking CurQD (Yellow Protocol) by Evinature.

I want to preface anything else by saying this is a supplement of Qing Dai (Indigo) and Cucurmin (the anti inflammatory found in turmeric) and it is not a prescribed medication. It was recommended to me by my GI doctor as something to try. Evinature does say that there are studies that back up their claims about its ability to help but these studies have been paid for by Evinature which delegitimizes them a bit because there could definitely be some bias. These can also be a bit pricey and as such not everyone can take advantage of them. I am not endorsing them and they aren’t paying me. This isn’t an ad. Everyone should do their own research.

This is my own personal experience so far.

One week in, it’s already made a difference. I used to have 5-8 bowel movements a day, they were mostly liquid, they were uncomfortable. And now I’m down to 1-2 solid BMs.

I didn’t want the anti-diarrheal (Imodium) that I was taking as a preventative every morning to interfere with the results so I’ve stopped taking it for now so I can gauge whether this is actually working or not and so far it has.

I believe in science and I believe in actual results. I don’t believe this is necessarily some sort of miracle drug. But things are moving in the right direction and, well, to be frank I could use a little hope. I’d be happy to update y’all as I go.

 

Diagnosed with UC (proctitis) in March 2023. Symptoms going back as far as 2014.

Have been on Mesalamine (oral and suppository) since the diagnosis. I’ve also been taking fiber supplements and daily 8mg of Imodium. And a few months ago when we checked my calprotectin levels, they had gone down from 833 to 75. I’ve not had a flare since January 2024.

So I had hoped that my colonoscopy yesterday would show some improvement. The biopsies aren’t back yet but they’re not seeing much improvement in the colon lining.

Just in a period of burn out that I’m sure we all experience at some point with a chronic illness. Hopefully I’ll try something new and we’ll see if we can get the colon lining to start repairing itself.

[–] c0smon4ut@lemm.ee 1 points 3 months ago

Howdy everyone. My name is David, a born and raised Hoosier still living in Indiana.

I was diagnosed with UC (proctitis) in March 2023, although I first started reporting issues with my GI tract in 2014. I’ve been on Mesalamine (both oral and supp.) since the diagnosis. I have another colonoscopy tomorrow to see if the meds have been working so fingers crossed!

Glad to see there’s a group here. I’ve gotten a lot of great information from the sister group on Reddit but much prefer the Fediverse.