Crohn's and Ulcerative Colitis

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.

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.

Do you guys know about the eataware site?

https://eataware.info/crohns-disease/foods

This could be huge.

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.

I'm new to colitis, but was diagnosed with ischemic colitis last year for the first time after a hospital visit.

Well, it happened again yesterday. I'm still mostly unfamiliar with the whole thing, but it absolutely sucks.

Question: how long does it take to stop shitting straight blood? This sucks.

Thanks.

EDIT: Seems to have stopped almost exactly 24 hours after it started. Cool.

The pain becomes mild discomfort and minor cramping around the 48 hour mark.

EDIT 2: Watermelon will save you life for both food and hydration.

But dumb fuck that I am, I felt the dire need for chips and salsa con queso today. It's like I never learn! Fuckin' idiot....

This point in the winter for me is usually some of the worst for me with my mood. Abdominal pain doesn't help any, nor does constant grey skies.

How is everyone else holding up. I know some of y'all are really struggling, and I just want you to know you have a cheerleader over here rooting for ya.

Hi fellow bowel fighters!

Stress is a crucial factor to managing the deasese. I'm sick on CU for 9 years and I didn't yet found good, fast and easy methods to lower the stress levels. I'm not looking for substances as I get easily addicted.

When I can, I'm exercising with bands and riding a bicycle but during flare it's not possible. Playing computer games helps a bit.

What are your ways of cooling down and resting from problems?

> These results aren't enough to prove the GLP-1 RAs in particular were protecting against CRC – even though the different groups were matched up as well as possible – but they definitely suggest that more research and clinical trials are worth pursuing

> this paper has some limitations. For one, it only reports on two of the 12 patients who received treatment earliest in the study. It also didn’t show any comparisons to other types of treatments with this type of patient and setting. That said, Kasi said the full results for all twelve patients should be available in the coming months and that his team is also planning future trials with more comprehensive analyses. However, he noted that these results were published because of how effective the drug seemed to be in these preliminary results. “It was not just the kill but how we analyzed the mechanisms of action of the kill,” he said.

It seems that trials already started. This could be a game changer.

Hi all,

I've had ulcerative colitis for 20 years now and mostly stay in remission with only 4 hospitalizations total. Still, I deal with UC difficulties on a regular basis, but don't know anyone in my daily life that has IBD, so I hope this community takes off to have a community of other IBDers to provide and receive support. I'll do my part to try to stay active here.

Hello All

I hope everyone is as healthy and pain free as possible.

I just want to remind myself, as well as anyone else that doesn't know, that un-managed stress will also put you in a flare. We have a chronic condition, and we can't do everything.

Please take care of yourselves, and I hope to hear from you all soon

I personally do not want to change from Humira since it's been working relatively well, and I like the financial support provided by Abbvie. I'm hoping that insurance companies aren't going to try to force it.

Has anyone tried them yet?

Does anyone else get all the symptoms of a flare, but without the bleeding? I seem to get them around extreme season changes.

Does anyone else get these?

That's all... I came here to get away from reddit and on landing I've seen a tonne of posts about not pooping. Idk why people with working buttholes would do this to themselves.

I don't know if this is common knowledge or not, but I want to get it out there in case it wasn't. I know in at least my state of Connecticut both Crohn's and Ulcerative Colitis are eligible for medical marijuana cards. Weed helps tremendously with the pain, and a lot of the light day to day symptoms.

Has anyone else had similar experiences?

As there are at the type of writing zero posts in this community I thought I might as well get the ball rolling.

I was diagnosed with UC around 10 years ago and, after my initial flare it was pretty mild. Around a year and a half ago I flared and suffered for most of that time, with the drugs I was being prescribed not really helping. Since the beginning of this year I’ve been on new meds and they finally seem to be working and I’m finally able to live more normally again.

In my spare time I’ve been working on building an iOS app that will allow IBD / IBS sufferers to keep track of their symptoms. I know there are apps that do that already but I’m hoping my app will simplify things and allow people to provide their doctors with graphs that show trends for symptoms over a period of time.

It’s a way off yet as I don’t have huge amounts of time to devote to it but I’ll get it built eventually.

Anybody else who wants to introduce themselves?

One of the best things that I've invested in is large ice packs and large heat packs. The ice pack is wonderful when you are in the bathroom and getting the lovely sweaty hot-flashes / nausea / fainting feelings. I also keep a small fan in the bathroom to help when you are getting one of the hot-flashes.

The heat packs are wonderful for recovery afterwards. having one for you abdomen, and one for you back.

Does anyone else have any neat ideas?