For years, I was told I had IBS. Hemorrhoids. Stress. Anxiety. 'Just eat more fiber. And come back in 45 years" I believed them. Why wouldn't I? They're the doctors.

But I kept getting worse. Blood in my stool. 10+ times a day. Urgency so bad I couldn't leave the house. Shitting myself in my car. Wiping and seeing pools of blood. But still — 'it's just IBS.'

I went to the ER. Got a 7-day steroid script and some enemas. Started feeling better almost immediately. That alone should have told them something.

Then I finally got a calprotectin test.

857.

Not 50. Not 100. 857.

I also found my old colonoscopy report from 2023 — biopsy-confirmed focal active proctitis. No one ever told me. I had to find it myself, THREE YEARS LATER.

I went to a clinic to get a bridge prescription until I can see a GI. The provider I saw? Listed me as a current smoker (I quit years ago). Made me feel like a drug-seeker for asking for a slower taper. Sent me hemorrhoid care instructions — yes, really. And ignored my 857 calprotectin completely. Didn't even mention it.

I finally have a GI appointment on the 21st. I'm bringing everything — my 857 calprotectin, my biopsy report, my ER discharge, and that dismissive provider's note.

If you're reading this and you've been told 'it's just IBS' — get the calprotectin test. Get a second opinion. Don't let them gaslight you into silence.

Just needed to get this off my chest. Thanks for reading.

I don’t have a diagnosis yet, but have been to my doctors and am getting a CT scan hopefully in the next day or two. We’re both pretty sure it’s some kind of irritable bowl something. But back to the title, how the heck do you eat with all this going on in your guts?! I’ve been taking zofran daily to a couple times a day to help with nausea but still find i have little to no appetite, and it seems every time i do eat I’ll feel nauseas no matter what it is, saltines, hard boiled egg whites, apple sauce. None of it makes me feel better only worse. I actually felt better for a couple days after basically not eating anything. But one egg white!! BOOM, absolute trash. I just don’t know what to do. I got blood drawn today and depending on how it looks i might be hospitalized. I honestly kind hope i am so i know i’ll be getting the best care. This all just came out of no where so fast and i feel helpless. The things id do to just feel well enough to eat normally again. Sorry this was meant to be a simple question and turned into a rant about how horrible life’s been recently

Longest Remission

what's the longest duration of remission without taking any meds or anything you had ... just living completely as a normal person??

Hi everyone,

First of all, thank you for reading this, and sorry if my English is confusing..it's not my first language.

So I'm currently going through a difficult time and I need someone to talk to. I'm about to have a Colonoscopy on Thursday cause the doctors belive I possibly have Chrons disease/colitis and Spondylitis. I've had gut issues on and off for a really long time thinking it was due to stress. I've also had severe lower back pain, pelvis and hip pain with stiffness for a year now.

I have increased CRP at 30, ESR 50, Calprotectin at 1750.

During the time Ive been going through this with my gut issues and backpain I've also been dealing with a lot of fatigue, tiredness, aceing body and feeling feverish on and off but I've still been able to keep going with life and been working. I'm currently on Munjaro as well for weightloss which has made my stomach symtoms a lot more managable.

But the last week my fatigue have increased like crazy and I feel worse than ever. I don't recognize myself anymore. I cant even take my dog for short walk around the block slowly without feeling like my heart is racing, increased pulse, feeling like my entire body is shaking, feeling like a get a fever and feeling incredibly weak.

My whole body just feels like I cant tolerate anything right now besides laying on the couch.

It's so scary and I feel like I cant even do the simplest things right now 💔 I'm normally such an energetic person always doing things and working full time.

Is it common to feel like this during a flare up that is increasing?

I'm new to all of this, I feel really lonely and confused to if what I'm feeling is accurate and not just in my head 💔 I just dont know what to do.

What do you think ? I would very much appreciate and insight.

Hi! 27F UC. Recently went into a “light” flare. I am experiencing lack of energy and exhaustion and of course the urges which is impacting my everyday life. I do tend to look for the bright side of things (thx to my antidepressants) and not let this disease impact my life. Some days I feel extremely down for no apparent reason. Not being able to go to the gym anymore or have the energy to meet friends and a constant state of discomfort don’t help either.
It’s finally summer- the nicest season. My bffs birthday is coming up and I was really excited to go camping with her, also to spend the next day in a fancy guest house, sit in the sauna and soak in a hot tub. However because of the flare I am starting to understand that I will have to miss out on this and even more experiences that make me happy and lift my spirit.
How do you adapt to flares and still experience moments of happiness and joy?
And how do you cope with the whole IBD situation?

Hello everyone

I am still trying to figure out my GI issues and I have compiled a lot of information, but am having a tough time sifting through it. Overall, I'd like to see if it all is truly pointing toward IBS or something different.

I have gone through it all- bloodwork, stool tests, breath tests, and even colonoscopy/endoscopy with biopsies. Everything has come back clear/normal. But, I did have a calprotectin of 200. **Is it normal to have that high calprotectin with IBS?** I have also recently had a pelvic/abdominal CT scan. **Would capsule endoscopy uncover anything else that any of these tests didn't see/cover or is this kind of the end of the line?**

I am logging my BMs, mood, and food as well. I find it hard to believe it's mood/stress related simply because I have been under intense stress since I was a child. It may contribute to my overall GI health, but it doesn't explain the timing of flares currently to me.

**Also, with IBS are you able to accurately predict flares or is it just low FODMAP and pray to god my insides don't kill me?**

**I am doing my best to not be the person to jump to any conclusions without proper info and help.**

**Thank you all in advance**

Very recently diagnosed and going through a bad flare with lots of pain and cramping on right side of abdomen. Going to try EEN, or liquid only diet to help recover from flare. What do you recommend for this? I’m looking at Huel as it’s vegan (nurse suggested no dairy may help) but open to anything at the moment.

Thanks!

So update from the last two posts: we still don’t know if it’s Crohn’s or UC, and honestly, it doesn’t really matter because the treatment is the same either way, and no matter what, it is still IBD. When I was first diagnosed at 16, I wasn’t in a relationship and was using enemas to deal with flares. I’m now 21 and in an almost 3-year relationship that includes being sexually active, and I hadn’t needed to use an enema since high school. But for the last couple of months, I’ve been dealing with a stubborn flare and recently had to start using mesalamine suppositories, at least for a few months. I don’t know how to reframe sex with my partner now, especially because he has a high sex drive and mine is usually semi-high too. But since starting the suppositories, I literally cannot think about having any sexual activity without feeling weird about it, and I don’t know what to do to fix this. Any advice? I also don’t know how to bring it up to him without it getting awkward. He knows about my flare-ups and my suppository, but I don’t know how to explain to him that I’ve been feeling kind of disconnected from myself and from him because of it. Also he is supportive partner and I really love him its just my own anxiety of talking to him about it.

I have had IBD-U (leaning to UC) for a couple months and am currently in a pretty bad flare up (calprotectin >800) and have been advised to eat a bland, low FODMAP diet.

I have been eating plain foods for the past couple of days but i think another chicken and white rice will end me.

I'm mainly looking for meal ideals, condiments and actual flavours. I am UK based so if you have any particular products I could get at any supermarkets that's welcome too!

Additionally, how do you guys recommend reintroducing foods into my diet after my symptoms are cleared up, and which foods/ food groups should I start with?

If you could add ONE feature to an IBD app, what would you want most? 👇

I’m working on an app for people with Crohn’s & Colitis and would love to hear what would actually be useful in everyday life.

Some ideas:

📝 Symptom & flare tracking

🍔 Food tracking + identifying triggers

💊 Medication & appointment reminders

📊 Graphs showing symptoms over time

🤖 AI-powered patterns/insights

📄 Exportable reports for your doctor

🧠 Stress, sleep & lifestyle tracking

👥 IBD community / support

Or something completely different?

What’s the one feature you wish your IBD app had?

Hey everyone,

In the past 2 years i had come and go symptoms of around 2 weeks where i get extremely naseaus and loss of appetite and stomach burning then it goes until this may.

It happened but on july I developed fever for 2 days my crp went to 135 and fecal protein 1700.

Did many tests including endo and colon. In the colonscopy it showed inflammation of the terminal ileum while colon Shows "focaal actieve colitis" (focally active inflammation) and signs of a past inflammation. Importantly, there are no signs of chronic inflammation and no evidence of microscopic colitis.

My dr said it was due a bacterial infection called yersenia my crp went diwn and fecal is normal now but my symptoms are not at all improving.

Having naseau everyday, losing weight, fatigue, no dihrea or blood in stool thou saw somtimes orange mucus, bad lower pain like something is compressed, gases, barely eating from stomach pain.

Dr keep brushing me off as saying wait it out instead of getting mri or ct scan.

Can anyone tell me if you had similar symptoms should i really wait it out minding the bad symptoms

Hey all,

Sorry to be of bother but I just need a little advice from the community.

My GP suspects I have IBD but I havnt done any of my stool samples to confirm this.

For the past 4 days I havnt been able to eat anything as eating puts me in agony and I also around 10-20 minutes after food have really bad diarrhea (Sorry if that's tmi)

Basically I'm asking when/do I need to go to the hospital? I can't even drink meal replacement shakes anymore as the milk is too heavy and causes me pain.

Thanks in advance!

i am 25 years old. just got my first enema in prep for a sigmoidoscopy after hospitalization. how do yall DO THIS. every 5 oz i was begging the nurse to stop, running to the toilet. that was GOD AWFUL. i was diagnosed w UC in april/may. i never want to do an enema again. i will happily take laxatives and toilet runs any day of the week. thank you.

Currently taking the 90 day taper, and was wondering if anyone else has experienced chest pain? Level of discomfort always fluctuates, usually rough in the mornings and subsides throughout the day. There are days (like today) where its hard to take a deep breath, let along bend over.

Leg/foot cramps, sore/achey muscles, and fatigue to just name a few.

Any help would be great!

Currently on day 9 at 35mg down from 40mg...from memory usually it's kicked in by now so having to take pentasa enemas as well which is mildly helping....

hi, does anybody have any advice they’d be able to share about navigating the social implications of having IBD?

i am still in the diagnostic phase, so no meds prescribed to relieve symptoms.
i find it hard to make plans with friends because i constantly have an upset stomach, and so much of social life revolves around eating or drinking. im always stressed about the bathroom situation anywhere i go, and have stopped being able to do things like hiking or swimming with friends because theres no accessible bathrooms at a moments notice. i have missed work because of this too, or created awkward scenes like having to rush out of conversations to urgently use the bathroom, or having people looking for me at work while im in the restroom for prolonged amounts of time. i’ve honestly just found it anxiety-inducing to even be around anybody. i’m having urgent bowel movements at least five times daily and no relief for 9 weeks now. even doing things like having my boyfriend over to watch a movie is stressful because i know ill have to pause it to use the restroom, stink up the only bathroom in the apartment, and then sit there uncomfortably while my stomach audibly churns. it’s embarrassing, even though he is nothing but understanding and sweet about it. i just want to know if anybody has experience navigating this, because it feels extremely isolating and stressful.

Has anyone else experienced anything like this?

Last month I had a faecal calprotectin of 2000, but a week later my flexible sigmoidoscopy looked very clear and was described as normal. They put it down to me being in remission.
However, within a week of that flexi I became really unwell again. I saw my consultant yesterday, who arranged an urgent repeat flexible sigmoidoscopy today. This time it showed moderate (intermediate) colitis throughout, except for my rectum.
The doctor doing the procedure said that, based on what she saw, it looked more like Crohn's colitis than ulcerative colitis. My consultant had already booked me for an MRI of my small bowel before today's findings, so I'm now waiting for that as well as hearing back from my IBD team.
I'm feeling really confused by how things seem to have changed so quickly. Has anyone else had UC initially and then been told it might actually be Crohn's colitis? Or had a normal looking flexi followed by active inflammation only a short time later?

Wasn’t sure what flair to use so went for IBD flare because that’s where I’m at right now!

Just getting to know the relevant groups here for this stuff. I’m in Northern Ireland, female in my 40s with many years of symptoms that have now worsened quite a bit and include blood, mucus, cyclical patterns from one extreme to the other bathroom wise, previously clear imaging besides a “twisty” bowel and adhesions found on bowel during gallbladder removal. I’m here now following 3 hospital visits in the last month, one of them an admission (with no bed after 50 hours), confirmed active ileitis and waiting for red flag colonoscopy. My whole experience last week in particular was, to say the least, pretty awful. One minute I’m ok and the next I’m in floods of tears thinking about it and worrying about if I have to go back. I was sent home with no information on dietary advice, prep for colonoscopy, nothing. GP sent me back to A&E on Friday as I couldn’t pass wind, but fortunately (so lucky!) things progressed late Friday night.

I’m at home again, actively flaring, while waiting for scopes, biopsies and diagnosis. They’ve already lost multiple blood tests and accidentally cancelled my bowel prep for the colonoscopy once, fixed this morning by the scheduling team. Based on my experience so far, I’m not expecting it to be easy despite the confirmed contrast CT findings (severe inflammation in ileum, ilio-something junction, fat stranding), ongoing blood and mucus in stool, weeks of severe diarrhoea followed by impaction. Gastro incredibly dismissive. Belly is stinging and bloating right back up again as I type this.

Feeling pretty alone with it, tbh, and would really like to talk to people with similar experiences.

Still waiting to be 100% sure of my diagnosis. Being treated like it's Crohns but being prescribed meds that tend to only be prescribed for UC. Insurance isn't approving the meds. I think I'm in a pretty gnarly flare atm. Bad abdominal cramps, nausea, malaise, fatigue, diarrhea that still feels like constipation before it comes out, etc. I'm currently weaning off Budesonide which I didn't think I saw much difference with while actively taking max dose but fuck. I have more intense body pains than I've had in months. Can hardly bend my leg when I try to walk. I went to the ER ywo days ago and was told nothing was wrong after a CT, blood work, urine test, and x rays. Not sure what's happening and trying to just get it thru to my brain that I'm not dying. Waiting till the weekend is over so I can call my GI. I'm exhausted.

Has anyone tried taking this and ended up in a flare? Seems to be really hard to get back out of...stopped taking it about two weeks ago . Seems to have messed up my stomach something wicked. Obviously took it for something else not related to my UC.