Hello!

I have thought I have Crohn’s for about 4 years now. An initial work up then did not come up with a diagnosis of anything other than IBS. Wondering how long it took for others to get diagnosis and if these symptoms sound familiar to you all? I met with a new gastroenterologist today and I am hopeful! Mostly just wanting to see what others journey in getting diagnosed was like
Symptoms:
- mucus discharge from rectum
- bleeding from rectum & blood mixed into stool
- frequent canker sores
- nausea and vomiting (frequently)
- baseline of very soft stool

Again not looking for a diagnosis, just wondering if these symptoms are familiar to anyone else!

Hi friends. I had my follow up MR Enterography yday and the results said there was some improvement but still showing signs of active disease. I’ve been on tremfya for about 3-4 months now give or take after an initial 4 week course of budesonide and cipro. Keep in mind I was only diagnosed in July 🫠

The tldr is they saw some improvements (yay) but obviously not full remission. My question is - is this good?? Is this a sign my tremfya isn’t working well enough?

I know it’s a marathon not a sprint but man I’m tired of this already 😭 mental health is in the gutter and I feel like I’m going insane with worry all the time

I started entyvio in August and sometimes it hurts and sometimes it doesn’t. When I used to take Tremfya it hurt sooo bad every single time. Does anyone else inject entyvio into their thigh? Where do you place it specifically? Do you sit or stand?

I’ve been doing it in the mid thigh area while sitting but maybe that’s not the best option because it still hurts more than half the time :/

does it ever affect labs?

Hi!
My 6yo daughter has suspected Crohns. Her calprotectin was 781, and we thankfully got into GI fairly quickly! Our next step are to do an endoscopy/colonoscopy under anesthesia. I’m nervous and not knowing what to expect. We should be contacted soon to have it within the month, and after that they want to repeat the Calprotectin test.

She’s had some pretty rough days and we’ve basically been told there’s nothing we can do about the pain etc , at-least until our scopes come back.

What are some tips/tricks for pain management and leading up to scope day?

Hey everyone, I have posted before but posting again to see where I should go with this situation. I had a calprotectin test of 318 in march, my colonoscopy came back normal. I have been experiencing some pretty bad abdominal pain since march. This month took another calprotectin test and it was 151… got a CT entrography done and they didn’t find anything in the small intestine. My bowel movements been caaaaraazzzzyyy my stomach always feel like it’s been inflated with air.

Should I just let things ride out and just try to ignore all this discomfort? Im getting sick of seeing doctors and im sick of fighting to be heard.

I had a pill cam done last Monday, and on Sunday my MyChart populated instructions and a questionnaire for an Enteroscopy. The next day this was in my chart

[Procedure Information and Findings] diffuse moderate gastritis. Patchy jejunitis with erosions and villous blunting. coffee-ground material in the small intestine and concern for bleeding. Has history of possible IBD ( bx MILDLY ACTIVE COLITIS) and this raises possibility of Crohn's disease.

[Summary and Recommendations] please schedule an enteroscopy with biopsies for evaluation. continue PPI BID

The surgery scheduleler told me that he opened up an extra slot for me in schedule and that I needed to have it done ASAP.

So I guess I MAY finally have the answer to the question I've been asking for years . Any tips or something you wish someone told you sooner? (Related to the Enteroscopy, Crohn's, or IBDs in general)

How hard is it to change doctors? I am about to start biologic medication but looking at all of my medical paperwork, I don't think she is doing a good job.

She dismissed my continued symptoms after I started medication as IBS in addition to UC. After months of bloating and pain I went to the er and had a ct preformed on a bulge on my abdomen, which showed fatty infiltration up to the splenic flexure, normal intestines and infiltration in the terminal ileum. Only then did she authorize more tests.

The colonoscopy she ordered didn't include the terminal ileum (mayo score 0) and then about a month later the MR Enterography found segmental wall thickening in the terminal ileum.

Looking back at my first colonoscopy paperwork, the surgeon noted the inflammation was patchy without signs of cronic inflammation which was indicative of "Crohn's, infection or NSAIDS".

My current diagnosis is UC with possible emerging Crohn's and without a biopsy confirmation will stay that.

My understanding is the lack of inflammation between the splenic flexure and terminal ileum alone should be enough to definitely say it's crohn's. Taken into account with the rest of the information I am at a loss.

Hello everyone!

I was diagnosed with CD back in the end of 2023. Since then I've tried Remicade, but failed it and after that started Rinvoq. This was back in May of 2024. I've been on Prednisone 2 times ( the second time i failed it because of awful pain from it) and 1 time on Medrol. The Medrol was because in December 2024 they found that i also had autoimmune pancreatitis type 2.... Yeah sucks to be me I guess. Anyways, after the Medrol therapy i felt fine, had on and off symptoms which was normal given the circumstances. Few months later at the start of 2026 my life changed ( for good). I started training, started eating almost anything without having problem, gained quite a lot of muscle mass and weight, but in late june something happened. I felt off, my energy wasn't the same, my appetite as well and 2 months later i found a bump near my anus. Turned out it was a perianal abscess, got that removed with surgery ( still hasn't healed, maybe it has turned into fistula? ). Since 1 month i have experience something that I haven't since my diagnosis. I get so many cramps, my stomach hurts a lot, my energy is so low, my appetite is gone and the strangest thing. When i have a meal, 1 hour later I get so bloated, my stomach growls really loud and i have a lot of farts and burping. The burping is the strangest because i never have had it before and it smells really strong like rotten eggs. Read in the forum that its called sulfur burps and its because the food isn't passing down the digestive tract and its starts to decompose in my stomach? Not really sure, but after a while of passing these burps i get really nauseous and eventually i vomit everything that I ate. This has happened multiple times and I went the other day to my GI and she said that she doesn't see any blockage and that its time for my follow-up examinations aka colonoscopy and MRI. I have to wait another week, but its gotten worse today i cant even hold a soup in me. I got so nauseous today while driving and pulled over but didn't vomit. Since around 17:00 ( right now its 00:25) i had gagging and my stomach is growling like crazy. It settled a bit now and I might try to sleep, but I'm really worried that this time it might be something more serious and that I'll need to take corticosteroid again ( really bad experience with them).

My question... Has anyone experienced something like that and if so what it turned out to be. I know that my question will be answered in a week, but still my overthinking brain can't settle down...

Sorry if my story or question seems strange. Really gonna appreciate any help.

Thanks in advance! <3

I am on Entyvio and I was hospitalised earlier this pregnancy. Got some cortisone. Then we reduced it. Symptoms never went away except for the blood.
I usually don’t have blood even when crohns is active so that was new. Anyways calpro is on the rise now around 400, other blood tests aren’t good either but they said it’s due to being pregnant and not to worry. My symptoms are terrible. I lost 5kg in two weeks I can’t really eat I’m in pain.
I started 40mg prednisone. And every week I am supposed to reduce 5 mg.
Anyone done that been there? Was the inflammation down until birth?
Did you need a c section due to the inflammation? All experiences welcome

I was diagnosed with stricturing Crohn's Disease 9 years ago. Since being diagnosed, I've avoided raw fruits and vegetables like the plague despite the fact that I LOVE raw fruits and vegetables. I've always wondered if I could reintroduce these foods into my diet safely.

So I made an app for it. You pick one change, say cutting dairy, and it sets up a small experiment: a few days eating normally, a few days with the change, in random order, repeated a few times. You log symptoms once a day, which takes about a minute. At the end it tells you whether the difference is bigger than you'd expect from normal ups and downs. If it isn't, it tells you that too.

There's no account and nothing gets uploaded. Your entries stay in your phone's browser.

Full disclosure, I'm entering it in an NIH challenge called NOURISH, and part of how they judge it is whether people who actually live with this had a say in it. That's why I'm here instead of just asking my friends.

If you have a few minutes, try it and tell me what's confusing, what's missing, or whether you'd ever use something like this. The feedback form is anonymous.

App: https://stephen-psaradellis.github.io/demos/selftrial/ Feedback: https://stephen-psaradellis.github.io/demos/selftrial/feedback.html

Not medical advice, and I'm not selling anything. Mods, if this breaks a rule, sorry, go ahead and pull it.

Usually found in infants or people around 55. Yet here I am at 30. 😖 sometimes it’s hard to act like everything is ok.

Does it ever stop hurting? Every time I look there is redness around the hole and it’s so sore like burning pain

I’m on upa after inflix not working

My colonoscopy was a lot better this time and my terminal illeium looked a lot better

Just never stop hurts, and walking around makes it so much worse

After seeing a number of posts about Zepbound helping with people's symptoms I decided to give it a shot. The first shot immediately reduced bloating and inflammation in my gut. The following week was nothing but stomach pain, cramping and serious fatigue. Brutal!

They said it might take my body some time to get used to it so I tried the second shot a week later. The symptoms were better but still way to much. I couldn't function and was just miserable with stomach pains and fatigue.

I'm wondering if anyone else has had a similar experience and found an alternative GLP-1 that didn't have such serious side effects

Hii so I was on adalimumab for past (almost) 7 years continuously. 2 years back I developed scalp psoriasis and ear psoriasis but decided to stay on because it was getting controlled by topical treatment. This year I developed HS which has been super tough. But my crohns stayed in remission throughout. Both are probably paradoxical reactions since my antibody test also came back negative.

Paradoxical psoriasis is well known, paradoxical HS not so much but it’s mentioned in the ECCO guidelines.

After recent clean scopes by GI said switching to Stelara is the best option since I developed these issues on adalimumab.

I got the loading dose on Oct 3. I know it’s a medicine that takes some time to build up.

Anyone who had to switch to Stelara for skin related issues- how long did it take for them to resolve?

Especially if you faced an issue with HS pls pls let me know, in the trenches right now

There’s a boutique medical clinic near me with hard shell HBOT therapy. Currently considering due to my rectal wound from my abdomino perineal surgery. Anybody with similar circumstances gone through this kind of therapy before?

Moving to Dallas and need a GI who is amazing. I’ve had meh ones who don’t listen to me. I’ve been handling my crohns well and on remicade but I want to make changes. Does anyone have any good recs? Or even more natural type doctors? I wish I could find a GI who acknowledges how important diet is here…. Not just focused on keeping me medicated.

Did any of your MREs to rule out Crohn’s show endometriosis on the bowels?

A little background: I've had Crohn's disease for years. In 2015, I underwent emergency surgery and had almost two feet of my intestine removed. I was fortunate enough to experience remission afterward, but over the last year or so, my health has really started declining again.

Since March 2026, things have been especially rough.

Back in March, I had a pretty significant episode that left me unable to work for seven consecutive days. I was dealing with abdominal pain, cramping, vomiting, dehydration, and extreme exhaustion. Not long afterward, I ended up hospitalized for four days.

Since then, it feels like I've never fully recovered. Some days are manageable, but others are absolutely miserable.

Here's what I've been experiencing:

• Abdominal pain and tenderness: My stomach hurts when pressure is applied almost anywhere. I also get random sharp, shooting pains, particularly in my lower right abdomen.
• Pain before bowel movements: I experience intense pressure and cramping when I need to use the bathroom. Sometimes the pain becomes significantly worse right before a bowel movement.
• Vomiting and nausea: I've had recurring episodes of vomiting, sometimes with very little warning. Recently, I've started vomiting material that smells and tastes almost exactly like stool. It's an incredibly distinct, awful smell, and it's happened more than once.
• Diarrhea and unpredictable bowel movements: My digestive system seems to have a mind of its own.
• Weight loss and nutritional issues: I've been losing weight, struggling with malnutrition, and feeling like my body isn't absorbing what it needs. I've lost 80 lbs. unintentionally.
• Extreme fatigue: I'm exhausted constantly. Even when I sleep, I don't feel rested. Some days I genuinely feel like a hollowed-out version of myself.
• Dehydration: I've had ongoing issues staying hydrated, and my GI team has discussed arranging IV replacement therapy.
• Sweating, dizziness, and shakiness: More recently, I've experienced episodes where I can't stop sweating, feel lightheaded, and become extremely shaky.
• Speech changes: Most recently, I even noticed myself slurring my words, which is not normal for me.

I've also had concerns about a possible intestinal blockage because of my surgical history and symptoms. I've undergone additional imaging and have been trying to work with my medical providers to figure out what's happening.

One of the most frustrating parts is that I feel like I'm constantly chasing answers. I've missed so much work this year, spent days unable to function normally, and I'm just tired of feeling sick all the time.

I try really hard to stay positive. I'm generally a happy, upbeat person, and I don't want Crohn's to become my entire identity. But lately, it feels like this disease is taking more and more from me.

I'm curious about a few things:

1. Has anyone experienced vomiting that smells or tastes like stool? If so, what ended up causing it?
2. For those who have had bowel resections, have you developed strictures, adhesions, or recurring obstructions years later?
3. Has anyone dealt with severe abdominal pain and digestive symptoms even when imaging doesn't provide clear answers?
4. Have you experienced periods where your Crohn's symptoms seem to progressively worsen over several months rather than during one obvious flare?

I'm not looking for a diagnosis from Reddit, and I know these symptoms can be serious. I'm in contact with my medical team. I'm just hoping to hear from people who genuinely understand what living with this disease can be like.

I'm 36 years old, I have a family, I work full-time, and I just want to feel like myself again.

If you've made it this far, thank you for reading. ❤️ Sometimes it's just comforting knowing you're not the only one fighting this invisible battle.

When I sleep for 8hrs a day I feel like I only got 3hrs but if I sleep for 3hrs it feels like 3hrs of sleep. 12hrs of sleep feels wonderful like I actually slept for 8hrs. Does anyone else relate to this is there any tips to give out I hate oversleeping but I dont function with out it either.

These past 6 days things have been getting worse by the day and I've just been searching for answers I don't know if this is an incoming flare or something else. Had a fever 6 days ago and after that my body just kept getting worse getting some joint pain every now and then stomach cramps coming and going, headaches, nausea, vomiting, tired all the time, shortness of breath, chest pains, liquid diarrhea. My fever went away 2 days ago but I still feel hot every now and then, I know for me at least some level of stomach pain is normal with nausea and vomiting and joint pains but the chest pains and shortness of breath is where im worried went to my physician and got an xray and Ecg as they recommended just waiting for results right now.

Anyone know what a flare is like I'm scared I'm just recently diagnosed should I prepare for the worst it seems like this is building up to something huhuhu

First colonoscopy is this afternoon, about to have the second prep drink. I was not warned aggressively enough about this nasty drink, and I read a lot to prepare myself for it. Psyching myself up to start the second drink now but they will be hard pressed to get me to schedule another one of these ANYTIME SOON.

Anxious for the results, but made my peace that either way I’ll either figure out what’s going on or I won’t have an IBD both are kind of wins lol

They are doing an endoscopy as well (had enough of those I am not nervous for that part at all).
I am diagnosed with EoE (since childhood) and IBS (since teenage/young adult). Kind of wished they’d checked my colon before stamping me with IBS now as they are concerned for IBD (specifically Crohn’s because of the on/off diarrhea/constipation and location of my pain). TBH the pain has been there for like 15+ years, bloody stools started on and off a few years after the IBS diagnosis around 22, and then last summer a couple months after having my second child i had severe hair loss/night chills and sweats/return of my GI issues (i was in remission during both pregnancies)/and sudden onset bi lateral carpal tunnel which i ended up needing the release surgery for by the end of 2025 (symptoms are already returning plus my thumbs and fingers are stuck every morning let alone other just aching stiff joints in and off). Autoimmune screening led to rheumatology which has now refereed back to GI (I went about 7 years without a GI specialist after being burnt out from suffering and not being taken seriously or gotten real help just diets and meds and treatments and tests that don’t work long term, sometimes giving relief short term but I always flare back up).

I’m not sure what exactly I am looking for, just anxious and nervous mostly for the results. Either way it’s both good and bad. I either get an answer which no one wants to have an IBD or whatever they might find in there, or they say my colon looks good but I’m still suffering with more medical bills and tests and doctors not taking the pain and symptoms seriously. Trying to stay positive but as this second prep window approaches I am losing the optimism.

I am almost hoping they find something as it would validate years of pain that’s been dismissed and hopefully open the door to real help and relief with treatments. But at the same time, I am so scared to have Crohn’s, especially not knowing what that might mean financially (USA, so medical care is expensive) for my family, my kids, any future children i want to have (planned to be pregnant with my third literally right now, but with my health issues we’re putting it off, now I’m scared I won’t have that option - not just bc of health but bc of the financial strain of having a chronic disease), etc. I think people really underestimate the mental toll being sick can have, especially when the symptoms are so embarrassing, and the guilt around the cost and burden in others of not being healthy. And I already know if this comes back fine, I’ll feel bad we spend the money on the test, and if it comes back showing something I’ll feel guilt and anxiety about the cost going forward. Obviously the lack of sleep after the prep has not helped my overthinking.

Hey! 32M, not diagnosed. IBD suspected, workup ongoing.

For about 3 weeks I've had aching in my middle finger joints, elbows and even shoulders, day and night. No swelling, no redness, no morning stiffness. Just this lingering mild pain.

A shoulder ultrasound showed bursitis, mild synovial thickening, enthesopathies and a small amount of fluid in both shoulders. The radiologist suggested seeing a rheumatologist. I am having the appointment next week.

For those with CD: what does your joint pain feel like? Swelling, stiffness, constant or in flares?

This might be a silly question but can the flu jab cause Crohn's flare up? I've been asymptomatic for over a year, I didn't get my flu jab last year. This year I got it and it immediately triggered a flare up. Does it cause my immune system to 'have a rave 🥳' which then screws up my bowels?

Hi everyone! I was cleaning out my My Chart inbox and saw messages back from 2021. It was shocking to read how poorly I was doing. I wish I could hug that version of me and tell her I would be ok. I have hung in there and am doing the best I ever have been. It took over 10 years to find the right drug, but I made it. I still struggle on a daily basis. At one point id rather die that live like this. I now have a more normal life. I did get liver disease from 10 years of trying drugs, but I’m still here. Idk I feel really proud of myself and I truly feel like a survivor and a warrior. No one would ever know this by looking at me. I smile even when I am in pain. Im a happy girl but I have a lot going on mentally. I hope this helps someone else or that it’s relatable. Im just feeling a lot of emotions and wanted to get them out of my head. Thank you for letting me post.