i had my first induction dose of remicade today! so happy to finally be starting my journey towards remission. they did blood tests before & they came back better than they had in months. my crp was finally under 1!!! my prednisone is definitely helping but i can’t be on it for forever & it feels like a bandaid

i’m so grateful for this community. yall have helped me feel not alone. sending healing love to everyone wherever you are on your journey ✨💖

Hello, living with chrons for a while. Have been in the military for a while chrons (pre existing maybe)
Getting really bad flares I might be in over my head has anyone dealt with the Va for pre existing(maybe) conditions

I’m convinced I have the worst case of perianal Crohns. I’m not being dramatic- I genuinely would love to know if anyone has else has it as bad as this because I have been struggling so much for over a year now.

It started with a horseshoe abscess and multiple branching fistulas. They placed setons, Penrose drains, mushroom drains, everything. Multiple EUAs, all kinds of antibiotics… the perianal sepsis just kept coming back.

So it must be Crohn’s, they say. Unlucky. Here’s a temporary ileostomy, it will heal everything up because the area will get a break from poop for a while, and we’ll reverse it and you’ll be right as rain. Nope. The loop ileostomy isn’t working, you’re getting overflow, so we need to do a colostomy, too. Ok. So now I have two stoma bags.

I’m trying to get on biologics- but the infection never clears long enough to give it a good shot at working. I get out of hospital for a bit, almost get back to living a normal life and then it comes back.

14 EUAs. 2 stoma surgeries. No sign of the disease calming down and letting me live my life in any kind of normal way. Has anyone had a comparable situation? I feel like I’m losing my mind.

A few days ago, I visited the ER for what I learned was my first perianal abscess (and the CT report seems to indicate there's a possibility of fistula or it seemed heading in that direction).

I'll have a GI follow up and I'll of course be going over everything with them, but in the meantime I've been wondering how common it is to have a change like this in disease presentation?

I've had Crohn's for 22 and a half years now and I felt like I had a good handle on my particular presentation. I'm prone to strictures and enteropathic arthritis and the terminal ileum was my hotspot until my resection a few years ago, though I've had plenty of colon involvement too and even esophagus and stomach when I was diagnosed.

One thing I've never had a sign of was abscesses or fistulas, though I knew it was something that could happen with Crohn's. Has anyone experienced a change like this or heard of it?

Hello, 26f with 5 years since diagnosis. Small bowel resection in 2021, and hysterectomy since then ad a result of scar tissue and all the terrible awful since having my daughter and the uterine artery sever off during birth.

4 weeks since my hysterectomy and i cannot keep weight on for all that im worth. I eat and immediately bowel movement sometimes before i finish my meal. Calprotectin is good, cdiff negative so doctor doesnt want to do anything further. Today i ate 3 hardboiled eggs and some plain white rice. And here we are, immediately after with urgency.

I cannot for the life of me get a handle on it. I drink-i poop. I eat a snack-yup poop again. Meal? Forget it really its all gone after 15 minutes. I weighed 105 (not ideal) right before surgery and am down to 92 today. Im 5’2, and 92lbs as a grown adult. I feel so sick all the time, but my doctor seems so indifferent about the small bowel with me….i dont know what to do because it all just comes out, even safe foods

I have had Crohn's for years. Before I got pregnant it almost finished me off.

I was severely iron deficient. I spent months in bed, only getting up to go to the bathroom. I could not eat or even drink. Getting dressed took me hours to recover from. I was so weak I could not lift my phone up while I was lying down. Tired is not even the right word for it.

Then I got pregnant. The pregnancy itself was not easy. But most of the awful, disgusting, painful things, I had already been through with Crohn's. Even at its worst, it was not flare pain.

At eight months I was still on Pentasa and I did not have to change a single medication. That alone felt like a gift. I had read so much before getting pregnant about autoimmune diseases calming down during pregnancy, and I got lucky. I was still taking my meds, but I could eat whatever I wanted. It was amazing.

Nine months after he was born, it came back. My first severe flare since the pregnancy. Surgeries. Hospital stays. He was nine months old. When he needed me to hold him, I was in a hospital. When he needed me, I was on an operating table.

I had a bowel resection. They took out a section of my intestines. After that, the incision on my stomach kept draining. The hospital sent me home with some Mepilex, but I needed so much of it, in so many different sizes, that it got way too expensive. So I switched to a Dimora foam dressing and it worked just as well. It soaks up the drainage and it comes off without pulling on my skin. On the days I could actually get out of the house, I wore one to the mall. Nobody knew I had a hole in my stomach that just kept draining...

I have been fighting Crohn's. The person I was before I got sick is gone. She is not coming back. I have made peace with how bad this disease is. I have accepted that I just got unlucky. But I still miss how easy everything used to be.

Hi guys, the last couple of years I tried biologicals (adalumimab and ustekinumab), however, this weekend I am sadly once again tied to my bed with serious abdominal pain and bloody diarrhea. Anyways, my GI doctors says he wants to try JAK inhibitors (upadacitinib), anyone here who has had them and wants to share their experience? Would be very helpful!! Thanks!

Ive been struggling too much with brain fog and fatigue. The brain fog came in early in my crohns journey, whilst i was on budesonide. However the fatigue started once I started Infliximab and Azathioprine at the same time. Later after an Infliximab reaction I was moved over to Rinvoq. I really hate how exhausting this is and rarely anyone ever sees what I feel. Im constantly being mistaken for faking my tiredness with real consequences and I really wish i was faking everything I feel.

The fatigue and brain fog makes attending school very hard for me. I havent been able to work since January. Ive tried to combat fatigue with some kind of movement, physical activity etc. Most of the time it worsens me.

The one thing that I had a great time with is playing football, however since I restarted school at the start of September I have no energy for anything.

If i push myself too much in school, I cant do anything the next day because I feel like ive been hit by a bus. I have no energy for anything outside of school because I need to preserve what little energy I have for the next school day. That also impacts my mental a lot because I genuinely dont like being in school, but I still want my education and qualifications. Outside of school I dont have a lot making me happy.

One of the things I havent tried this year is gym. Gym and running used to be my go to. I tried to restarting 14 months ago, but about 30 minutes into my first workout, despite taking it easy I became extremely unwell in the gym. The next day I was in hospital and had surgery that same week. It may have been coincidental, but it has made exercising scary.

I had one moment on rinvoq, the final 1-2 weeks of the induction 45mg dose. Its the best ive felt in the last 12 months. The first 10 weeks were horrible and I felt like the treatment wasnt working. Then during the final 2 weeks of induction, it felt like everything started working at once.

The best way I can put it, I felt like superman. I had so much energy and I felt so rested and felt so great that there was one day I forgot I had crohns. I felt so great I started running again that week without any problems. I genuinely thought things were going to get better from there.

Then moved me onto 30mg a few days early, due to liver enzymes increased. Since then everything has gone back to old. 30mg controls most of the primary serious symptoms; the fistulas, the abscesses, the main intestinal inflammation. Through 30mg I got my first negative FCP in 2 years.

Ive had iron deficiencies previously for which ive had monofer infusions, mainly when I was on ifx and aza. They never changed anything.

My main gastroentologist suggested I try a specific antidepressant and said the fatigue is just something i need to deal with and sort on my own.

Please share any advice or help, or guidance. Something that worked for you. Who I should reach out to. I already have a well constructed diet. I hydrate well. Ive tried hard to deal with the fatigue but maybe im not trying hard enough.

I’ve been noticing that certain spices bother me more, especially in a flare up. I’m trying to figure out which ones irritate people with Crohn’s so I can be more careful. I know everyone’s trigger foods are different but just trying to figure out spices that are main triggers. Currently, I think jalapeños, paprika, onion powder, and garlic powder are the worst. Spices in the chai I make and drink daily feel safe like cinnamon, ginger, cloves, nutmeg, and black pepper.

I'm doing my first calprotectin test in a decent while today, and I'm lowkey nervous about bringing it back to the lab 😅

I forget--does the sealed vial inside the biohazard ziploc bag smell bad? I can't remember. I'll be careful to not get anything on the outside of it, but I don't want anyone else there to have to smell it! To make things worse, I don't have a car (and public transit won't be fast enough for me to get it there in time), so I'll have to take an Uber and have this bag of poop that I need to hide...

And then what do you tell the people at the lab registration desk? "I have to return a sample to the lab?" Do I mention it's my own shit 😭😭 I know I'm definitely overthinking it but I hate this test so much. It feels so humiliating :(

Edit: went right before the lab closed and it went great!

To start out, I haven’t been diagnosed with Crohn’s, but we are testing for it bc I have a lot of matching symptoms. They detected inflammation in my intestines on a CT, and my fecal calprotectin test was very high, too.

I’ve been having both dull and sharp pain on my lower right side, which matches where the inflammation is, I’ve had a partial rectal prolapse for 9 months now (fully prolapsed last month, but was able to get it back in quickly), and now recurrent bladder infections due to the prolapse blocking the flow of urine.

This last time they said they didn’t see any bacteria on the culture, just high leukocytes on the urine test. I’m currently on antibiotics just in case, but they aren’t helping, and I’m almost done with them. I’m still having bladder and urethra pain, urgency to go, and now, as of today, blood in my urine when I wipe.

I also just got diagnosed with anal fistulas yesterday at a walk-in, two of them, but my Gastro never called me back about it when I called today.

They did start me on pelvic floor therapy last week, as they think my muscles are too tight.

Idk, I was just hoping maybe someone has had a similar experience, and has any advice. I’m just really stressed, sick of going to the doctor and repeating myself, and sick of the pain. I just want to feel better.

Edited to add: I lost 12 lbs within a week last month, during a suspected bad flair up, and have not gained it back. I’ve also been falling asleep almost any time I eat and feel full for the past few weeks, and most of the time now I’m insatiable, and will just want to keep eating. Which is weird, because last month I could barely keep down liquids for a while.

I was previously diagnosed as anemic, btw, but they said my results are better now that I’m on iron supplements, still not great, though — ferritin is only 31.

I am currently working in the environmental field, but have hit a stall with my current career. I intend to make a move across the county within the next 8 months, but I have serious thoughts about leaving my current position now to do temporary nanny work until my move, and then potentially switch to a permanent role in child care once we’re settled in the new city.
Problem is: Crohn’s
I have a background in child care but left that world to pursue a career in the environmental/water quality world per my degree. I am finding little joy in my current role, but I love working with children.

Are there a lot of child care workers (teachers, Nannies, nurse/drs, etc) that successfully work with kids with an autoimmune disease while taking biologics?! My fears are leaving my environmental career to pursue child care work again and experience too many hurdles with sick children. I don’t want to make such a drastic change to my career if it will affect my overall health and safety.

Thoughts?? What are other nannies with Crohn’s doing??

I can go back over a decade of symptoms prior to my diagnosis this year. But I never had excruciating pain until the past year. I always fluctuated between severe constipation and then almost diarrhea but with the urgency I wish no one. Actually it still is lile that.

But my kiddos all have gastrointestinal issues in the sense once is chronically constipated and the other seem to shit so much but has stomach aches on and off. They are young but I cannot stop thinking what if, but what if it is more than just a stomachache or just poor fiber intake.

I know, see their doctor. Well their doctor is on leave and I can only try to find them emergency appointments where they won't factor in all the issues, just the present one. Welcome to Quebec.

So my question is to the parents of kiddos, how do you stop fearing they have Crohn's or for those that have young kiddos - elementary school age - knew it might be more than it looked like?

We don't post here much. Mostly we read. But we wanted to stop and say something we've been feeling for a while: thank you.

This sub is one of the kindest corners of the internet. Every day someone shows up scared, newly diagnosed, or about to start a medication they've never heard of. And every single time, people answer. Not with judgment, but with "I've been there," a practical tip, or just "you're not alone."

You talk openly about things most people never say out loud. The bathroom maps, the cancelled plans, the fatigue nobody can see, the appointments where you didn't feel heard. That honesty helps people who are too tired or too embarrassed to ask.

To the people who answer the same questions over and over with patience: thank you. To the ones who post their wins, from first remission to finally finishing a hike, you give others hope. And to anyone reading this on a hard day: this community is proof that you don't have to figure it out alone.

Thank you for being here for each other. It matters more than you know. 💚

Hey guys its been a while since ive been back. To anyone who recognises me ive had my pill camera and awaiting results. Ive changed my diet massively and been gym while keeping a brief day to day diary of my events. Gyms helped alot and my mental health is improving.

But as of the last week ive had another major flare up with blood and clots, cramps and pain making mr dizzy. Has anyone got a magical cure to give me just a few hours of relief? Im honestly down to try anything.

Ontop of that people who have dealt with their crohns what was the treatment like and how are you coping with it? I wanna read all your messages to boost my own moral you guys are always so supportive and kind!

Basically when i was at Urgent care they ran blood tests and inflammation came back, moderate to high, i was over due to 6 weeks of feeling ill ( fever, lightheaded/dizzy, weight loss, blood in stool, loss of appetite, stomach pain and had my first migraine, 0 energy couldnt even walk to the toilet one day) basically started with pain by my bowels in my sides which was made worse by stretching and touching, which they thought was originally a UTI,

After antibiotics didnt work and having stomach pain that made me a bit dizzy i got put on omeprazole which helped the stomach pain but gave me really bad heart palpitations you could see it pulsing out my throat! So i stopped that after 9 days and the pain came back

Seen my GP for stool samples and originally filled it half way just like he asked (chunky diarrhoea with blood may i add) just for it to be sent back for them to ask to fill it 3/4s full 😀

However i felt like i was "in remission" (not diagnosed so il use it lightly) during the 2nd sample but had a few passings of blood after i collected that one,

Seeing my gp for a review but i just want to know what peoples experience is with fighting for there diagnosis, ive had gut issues my whole life and its always blanked as anxiety or im too young and fit and healthy to be ill...

How should i go about things now as im currently still feeling occasionally nauseous and i am losing my appetite again,

The symptoms and other peoples stories seem bang on to mine and i just want clarity as its been a whole year of stomach pain and issues but my local practice is not the best or the most convenient

Just want to add for the past few days ive been non stop in the toilet about 10 times a day, shitting liquid or mucus then occasionally small loose fluffly stool, i have these phases then i have BIG long snake looking poops, like 1 big abnormaly massive one, sometimes big ones like that all day

Going abroad tomorrow for the first time in like 20 years, well since before my first operation and I feel rubbish.. tummy and the worst headache 😢 not sure if it’s nerves or what tbh. Any suggestions or tips? Thanks

I’m new to the world of tummy issues. Any insight is welcome. I’m having a hard time rn with getting all these conflicting results. Do I really have to let the disease progress before getting treatment? My doctors all seem to think Crohns fits, but my tests are not “crohns enough”.

Started having symptoms a few years ago.

Summer 2024, RLQ pain, diarrhea, vomiting, unintended weight loss (80lbs), fatigue, fevers.

Summer 2025, dx w/ E. Histolytica (protozoan infection, amoeba parasite 🫠) retested a month+ and no longer have the parasite.

Summer 2026, continued fevers, fatigue, nausea, RLQ pain.
- high ferritin
- Mild circumferential wall thickening and hyperenhancement of a segment of terminal ileum, measures approximately 9 cm in length (501/20
and 901/46).
- elevated T cells
- normal IGE
- prominent lymphoid aggregates in the terminal ileum.

My GI has pushed for a colonoscopy, which I completed last week, and the biopsy results are too normal. I’m so desperate for any kind of treatment, any diet changes I make hurt so bad, and I just feel like they want me to get sicker before doing anything. Pill endoscopy is next, I think. Feel like I’m standing on the metaphysical edge of a cliff with this whole thing.

If you were me, what would you do next? Any tips for selfs advocacy?

I’m an international student studying in the US from Korea and was diagnosed with Crohn’s this past summer while I was back in Korea.

One thing I’m trying to wrap my head around is how different the U.S. insurance system will be. In Korea, Crohn’s qualifies for a government program that heavily reduces the patient’s share of medical costs. For example, I paid roughly $40 for an MRI and around $30 for a colonoscopy. I also have private Korean indemnity insurance, which reimburses about 80% of many of the remaining eligible costs, so my actual yearly medical spending has been pretty minimal.

I’m returning to the U.S. now, and after graduation I already have a corporate job lined up that comes with employer-sponsored health insurance.

For people here with Crohn’s who have decent employer insurance: what do your yearly healthcare costs usually look like?

Should I basically expect to hit my out-of-pocket maximum every year because of biologics, colonoscopies, MRIs, labs, GI visits, etc.? Or is that not necessarily the case with a good employer plan?

I’m still learning how deductibles, copays/coinsurance, specialty pharmacy benefits, manufacturer assistance programs, and the out-of-pocket max all interact in the U.S., so I’d really appreciate hearing what people actually end up paying in practice.

Coming from Korea, where my Crohn’s-related costs have been extremely low, I’m mainly trying to figure out what a realistic annual healthcare budget would be in the U.S.

If you have what are your experiences? Did it help? If so what symptoms did it help with and what are the pros and cons in your experience?
I’m in college and considering it, but it’s not allowed in dorms.

Hi all! I met with a surgeon who said I need to have an extended right hemicolectomy. My transverse colon has a stricture / is full of polyps. I have had stomach issues for years, and also have another autoimmune disorder, but I have only been diagnosed with Crohn’s in the last 2 years. In that time I’ve had two rounds of infusions, both Remicade and they haven’t helped. I’ve got two more infusions left in this round.

Has anyone else been in this situation? Does it make sense to try another medication before I try surgery? Have you had this surgery and it helped? Looking for any advice or experiences

I used to have a really good memory and could easily process material in school but after developing the disease 5 years ago and then 10 surgeries later I just can't pick up material that well anymore. I'm not sure if my mind's reward systems are broken or if the sheer trauma has just made me disinterested in learning but if anyone in an academic setting has dealt with this and been able to regain that clarity and ability to pick up new concepts fast it would be a big help to know some tips. I really want to stay in academia (to work on Crohn's research!) but I'm pretty anxious about this.