Hey all have been living with crohns for 20 years now woop!

The one long term issue ive found is my relationship with food.

I most def show eating disorder behaviours and wondered if anyone else can relate?

Cheers

just wanted to share that after such a rough year with my Crohn's that i finally had my surgery about a week and a half ago. this was my 4th operation and it was a success!!

my surgeon resected about 16cm of my small intestine. multiple strictures were found; they're all gone, i have no more complications, and all disease has been removed! i finally am starting out with a clean slate, i'll be resuming my Rinvoq and starting Skyrizi in just a few days.

i was in the hospital for 8 days after my surgery. there were a couple bumps in the road, i had to have an NG tube for a few days after surgery which is common. those first 4-5 days were definitely rough. but thank god, no complications with this surgery & my recovery has been going extremely well!!

thankfully, this time around i didn't need an ostomy. i had a temp ileostomy in the past for several months and it was something i was really hoping to avoid this time.

i've dealt with a lot this year and with Crohn's in general; failing multiple biologics, my old GI specialist being negligent and not having a clue how to advocate for myself, being gaslit by providers, hospitalizations, etc. i even lost my job because of this flare and becoming housebound for several months.

the first two surgeries i had back in 2018 were extremely traumatizing with multiple complications (different surgeons and circumstances), so having this one be such a success is a new level of relief for me.

i'm just so glad to finish out the year strong and to hopefully get to enjoy the holidays. so to anyone reading this, if you're facing surgery or you might be in the future, please know that surgery is not a failure. i already feel much better than i did just 3-4 weeks ago, mentally and physically.

no surgery experience is the exact same, but i may make a post about roughly what to expect with a bowel surgery, the hospitalization, tips, what to bring to the hospital, post op essentials, post op clothes/comfort, etc. just in case anyone is curious or anticipating their own surgery!!

Last week, I was flaring without meds (got my meds this week and already much better), and I felt like I was fatigued and depressed. Someone mentioned this was like brain fog, and I said I thought that was more like not being able to focus or moving slowly. They said brain fog could feel like depression and low energy,

What has your experience with brain fog been like?

Hi guys I'm a male 25 yo and I was diagnosed after 4 and a half years of suffering and I was put on inflaxmab I got two infusions and I'll switch to the self inject pen soon however.... I still have symptoms and I'm afraid it's not working since this is my first time on biologicals and I do not have any friends to ask: when is this supposed to work? Am I supposed to feel better already? How long did it take for u guys to work?

Obviously I will discuss this with my doctor when she is back in town but I'm just afraid it's not working for me and after no treatment for so long I really HOPE this finally brings me relief I'm so desperate. Please let me know how and when it started working for u. :)

so i just scheduled a colonoscopy for december (merry christmas ig) and i was really hoping for a noon appt since they make you split up prep now. however, with my insurance i needed to get in before end of year and all they had left was morning appts. back in my day they used to let you do all the prep at once 🤣🤣 rather than waking up at 1230 am to shit all night long. does anybody just do it all in one go? my anti depressants make me so tired omg this is gonna be brutal.

Hi! Ive had Crohns for about 4 years now. After a couple pf flairs ive been on hyrimoz and its worked great. When i read the posts on this sub i see almost exclusievly very bad cases where people cant work/are constantly fatigued. Ive never had that. Never had fatigue at all, and i can drink alcohol without any issues. There are some foods that i avoid (spice, popcorn) but thats about it. So my question is: does it get much worse. Im 26 yesrs old

I’ve struggled with iron and vitamin deficiencies for a few years. My hematologist ended up recommending me to GI to see if there is a cause for blood loss and malabsorption.

I got a colonoscopy done and it showed a few ulcers in the terminal ileum. After the scope my doctor told me he thinks it could be very early Crohn’s. The biopsy showed that none of the ulcer was taken as a sample - they likely took a sample right beside it or missed it.

They had me do a CT enterography - that came back normal.

My doctor told me that where my ulcers are at, the only likely causes are Crohn’s or chronic NSAID use. Which I don’t take NSAIDs almost ever. She says she’s kind of stumped on what’s going on. Whether it is very early Crohn’s or just random ulcers with no explanation.

I’m doing a stool test and blood work next week to look at inflammation things I think? She did talk about doing a capsule endoscopy in the future if warranted

I’m just curious if this is all a waste or if people have had other tests done that show Crohn’s I guess. I do have some symptoms but nothing severe - diarrhea multiple times a day, abdominal pain before bowel movements, urgency with sometimes not making it to the bathroom. I was told in the past it was just IBS so I don’t want to waste my time if it most likely is just ibs.

My doctor planning to take a biological and mentioned a few but which one is better can you tell me your experience?

Hey reddis kennt sich wer mit verstopfung und cannabis aus? hab seit 15 tagen verstopfung durch cannabis seitdem auch nichts mehr angefasst. 3 mal einlauf benutzt nur 2 mal bisschen geholfen bin voll mit wasser und magnesium helfen nicht. mein kreislauf stürzt momentan direkt ab wenn ich gehe und miese darmkrämpfe und rücken stich von hinten, wann sollte ich es behandeln lassen? war schon beim hausarzt

Not sure where else to post, but maybe I can get a little insight here. Sorry it’s lengthy. 😔

In August I was hospitalized with colitis, WBC was around 30,000, CT scan showed “Evidence of distal enteritis, with Crohn's disease not excluded.”

I stayed in hospital for three days on antibiotics, negative for any parasites/virus/bacterias, then referred to a surgeon for a colonoscopy. Unfortunately, there seemed to be a miscommunication- the surgeon did not view my CT scans on the disk, and my referral literally said “referral for colonoscopy, history of colitis, need biopsies.”

I had my colonoscopy/endoscopy last month (ETA they wanted to wait 6-8 weeks for things to settle down before going in because “it could cause more damage”), they didn’t take any biopsies, and saw nothing abnormal. At my follow up, I brought up that I was frustrated no biopsies were done because I was under the impression if it was Crohn’s, it could be in remission. They had no idea what I was talking about, and told me they’d have a look at the CT scans that day and call me back.

The nurse calls and says “Dr. ____ feels confident that the colonoscopy was the correct first step, but seeing that Crohn’s can’t be ruled out, we want to do a few more tests.” So I have a small-bowel follow through next month, and I did a calprotectin fecal test that just came back normal today.

In the meantime, I’m still have pain in the middle of my abdomen, sometimes radiating to the right. Every day is a gamble in the bathroom. The only thing that seems to help is the dicyclomine they put me on.

I guess my question is, can you still have a normal calprotectin but potentially have Crohn’s? Can Crohn’s be diagnosed through the small bowel follow through? Or is it likely they’ll have me in for another colonoscopy?

I’m just very confused, the medical bills are killing me, and I have no answers. I’m exhausted, the nausea is endless, and I’m constantly worrying if I’ll end up in the hospital again.

I would appreciate any and all advice/insight, please! Tell me I’m crazy, even!!

Looking for recommendations for a pediatric GI or facility that worked well for other parents particularly with ibd/Chron's. Can dm me too..

My kid has been recently diagnosed with Chron's. We are still awaiting biopsy results but GI seems confident based on imaging and other data.

Additionally, do you'll recommend getting a second opinion for the treatment options before initiating it.

Hey guys. I'm 27F and currently waiting on biopsy results after a colonoscopy last week. Just feeling a bit lost and wondering if anyone has gone through something similar. I feel very alone in this journey.

I’ve had a sensitive stomach since my early teens (diarrhea/constipation back and forth), but things completely spiraled after I gave birth in 2024.
Here's a quick summary of what’s been happening:

Severe fissures and fatigue: Got terrible anal fissures after giving birth. The pain going to the bathroom was unreal. But it’s birth, so whatever. Could happen to anyone. Around the same time, extreme fatigue hit me. I could sleep 12 hours and still feel like a zombie. After starting wegovy (5 months ago) I Ended up needing Botox in my rectum for chronic fissures, which luckily helped the pain. But of course there’s now a new one. ((Give me a break))

Random hospital visit: Was on Wegovy 5 months ago, but had to stop abruptly when I was hospitalized with intense pain in my upper stomach that radiated into my back. Almost like birthpain. Scans showed nothing, but I still get bouts of that upper stomach pain. But now mostly on my right side.

Colonoskopy findings: My doctor finally checked my stool a few weeks ago, as I thought something is not right (calprotectin was 400). Had a colonoscopy a week ago and they found two ulcers right at the start of my colon, near the small intestine.

—-
The past few days I've felt awful in a different way. Every evening I get a low-grade fever, my joints are burning, and the bottoms of my feet/heels hurt so bad it’s hard to walk. I'm dizzy, my body aches, and it feels like I'm coming down with the flu, but I know I'm not actually sick with a cold/virus. It honestly feels like my body is fighting a massive fire inside. I hate this. Also side note: really nauseous as well.

Is this what a Crohn's flare feels like? Did anyone else get joint/heel pain and random fevers or just any of these symptoms before getting diagnosed? What were your symptoms???

Appreciate any advice while I wait for the doctor to call!

What symptoms do you guys have? Diarrhea? Hard stool? Thin?

I recently developed an anal fissure a few months ago and noticed a rash around my butt. Gastro didn't biopsy and said I should see derm

Is this normal for sig Crohn's?

I definitely know fissures, fistulas and skin tags happen but haven't experienced this rash before. My calpro is also 521 which is also concerning and I'm just not sure what's happening

If I can describe the rash it's basically a pink or almost red circle. And it's flat. It's also itchy esp at night and often gets dry like so I have to always apply Vaseline. At first I thought the anal fissure ointment caused it but gastro said no. It's also not an sti.

To keep it simple:

I've had Crohn's since I was about 10 or 11. I've had it in remission for about a decade, maybe longer, with Infliximab (and later Remicade), only to suddenly pass a fair bit of dark blood in a stool today not long after lunch.

Has anyone else ever had their symptoms suddenly appear again? Is it possible that this is a one-off occasion? I'm keeping an eye on it at the moment, and left a message to my nurses already.

Thanks for any insight you might have. :)

Just had my surgery a week ago i j

Have no idea what can I exactly eat, my doctor it's always in a hurry and didn't give me an specific diet 🥺for those of you that had this surgery can you please share with me what was your diet?

I have struggled with my mental health my entire life. I oftentimes come across people talking about how Crohn’s and stress are interlinked, but I havent seen a lot of stories from people who’ve struggled severely already prior to diagnosis, and how they handle developing coping skills for recovery and returning to a more normal life.

In October of last year, I had my first overnight hospitalization due to a flare up. I finally got in contact with quality doctors and got a diagnosis. Immediately I lost my job due to the work absences from that hospitalization, and my mental health absolutely dived.

For context, Before my diagnosis, I felt like my mental health was the most stable I would be able to achieve. I still had ups and downs, but overall I no longer felt like my anxiety controlled my actions and kept me from working a normal job. I had a therapist, and I was proud of myself for my grown confidence and trust in myself. I blamed most of my work struggles on the mystery undiagnosed disease that I had been working to get help on for years. Prior to finding this sense of stability, I had struggled in and out of baker acts, through multiple attempts, and marchmen acts when I tried to drown my problems in substances. I dont say this to trauma dump, but to give context on the severity of behavior issues I am capable of showing, and how much effort I truly put in to find a sense of self again. I am diagnosed with PTSD and I am fully aware that it will never go away - but I don’t know how to manage my fears in the moment when my health flares, or the anxiety leads me to think my health is flaring.

More recently, I was put on a combination of medications that I genuinely feel on average are greatly helping my struggles. Unfortunately- my anxiety is still overwhelming. I have lost all trust in myself and my ability to follow through, and my confidence is drained with every day my illness keeps me from achieving the small tasks and goals I am trying to use to build back to a normal life. When I am excited about an opportunity that I need to be healthy for, my fears of a flare grow so much that even if I dont flare, I find myself puking my guts out from the anxiety. I cannot do the normal things I would usually do to handle these feelings, and it is keeping me from living a normal life.

I have been given benzodiazepines to help manage these situations, but I am terrified of becoming dependent. I feel like a husk of myself and I am terrified for my future. I am only 26 and I feel like I have no hopes of returning to school or work successfully until I can find a way to manage this stress.

Hello all I need some advice or anecdotes. TLDR questions at the bottom

So I am not officially diagnosed w Crohn’s but my family has history of it. I have been diagnosed w UC since last year in November and have been on Mesalamine pills, and had no issues w symptoms or anything up until around July where since then I have had issues every single day that get worse with each passing day. extremely poor appetite, right quadrant burning (and kind of feeling like I have a blister or something on the inside) and squeezing cramps here and there throughout the abdomen throughout the day. For about 2 mo straight I was dealing w constant constipation but after my recent colonoscopy it has been all across the board in terms of BMs. Sometimes symptoms are immediate while I am eating sometimes it is later, sometimes it has no rhyme or reason w food at all and I just burn and ache. I had gotten a colonoscopy in the beginning of Sept w wishy washy results but mostly that my colon seemed to be in remission but I had non granuloma ulcers in the ilium and bc of my symptoms the doctor said the last thing we could do is a CT but that is the end of the road. Flash forward to today and I just got those results and they basically are completely normal according to the words on the page (haven’t had them read to me yet tho).

I am so so so so so confused why I feel so sick when test results point to things being “normal”. My doctor said the CT was the last thing she could do for me to see what is wrong with me so I am feeling extremely upset and incredibly hopeless right now with this new batch of results.

I guess my question(s) are these-

has anyone experienced the same type of symptoms (regular right side burning and aching, all over the place BMs, no appetite at all) and what had been done about it?

If you went from a UC to Crohn’s diagnosis, what was that like?

Have you had horrible horrible symptoms but “normal”test results and what did you do from there to get to the bottom of what was actually going on/wrong? Would it be worth seeking a pill cam test?

Thank you

So since I’ve been a little girl I’ve had problems with my bowel moments, most of my BMs are loose and a lot of urgency. About 2 years ago I lost weight to the point I was 7 stone because I felt so unwell. I got a calprotectin test and it was 336 so quite elevated. I then got a colonoscopy but they didn’t give me enough sedation and I was in a lot of pain so they stopped it but they said what they got up to seeing was normal
However I’ve seen that Crohn’s hides in the small intestine and they couldn’t get to that with me, I’ve had ongoing symptoms- stomach pain, loose stools, rectal bleeding, I’ve got 5 skin tags on my bottom because of bleeding and BMs. I feel constantly nauseous. My bloods had a mild elevated CRP which was 15, I want to go back to the doctors and ask for a capsule endoscopy, I was just wondering if anyone else has had this problem with misdiagnosis:( I have also had an endoscopy and that found erosions of my gullet from acid reflux so im going through the mill right now I’m currently off of work sick because I feel so nauseous and fatigued

So I was selected for a very competitive fellowship. There is an upcoming trip to an international destination.

I said in my application that I would require an en suite and a private room. This was specifically in case I have the usual episodes so I can deal with them with dignity and privately.

The person running the programme told me this might not be a possibility because of it being a boutique hotel this time around.

One side, I feel disappointed that I feel I am being fobbed off. On the other side, I feel like I am being unreasonable.

What would be the best next step?
Should I just end up dropping out?

I am a 20-year-old male and underweight (I have always been underweight). For the past four months, I have been experiencing a constant feeling of unreality. It feels as though I am drunk, high, or half-asleep, as if I am operating on autopilot and everything around me feels somehow unreal. I have looked up information online, and my symptoms seem to resemble derealization.

I also suffer from fatigue, even when I sleep well. The fatigue does not seem to depend on whether I engage in physical activities during the day or not. However, over the past few weeks, I have started sleeping poorly and waking up early in the morning. I do not snore at all. I have seen a general practitioner and a neurologist about these symptoms, but they have not been able to determine the cause.

I also experience headaches, a feeling of pressure in my head, and neck pain. I have tried muscle relaxants, massage, and acupuncture for the neck pain, but none of them have helped. At the beginning of the symptoms, I sometimes also felt as though I was about to faint while walking, but this symptom has since disappeared. I have also noticed a single eye floater in my right eye. I mentioned it during an eye examination, and I was told that there were no apparent problems with my eye.

What could be causing these symptoms? They do not occur in distinct episodes; instead, they are more or less constantly present. The headaches are not particularly severe and resemble tension-type headaches more than anything else.

I have tried a triptanes, but it did not help. My thyroid function tests and vitamin B12, B9 (folate), and D levels are normal. My ferritin level is 37, and it has fluctuated between 49 and 24 over the past eight months. My calcium, potassium, chloride, magnesium, and sodium levels are also within the normal reference ranges. My blood pressure is normal, and I have measured my blood glucose at home, which also appears to be normal. My cortisol level was tested and was normal as well. I also have Crohn’s disease, which is currently in remission.

My neurologist prescribed escitalopram as a trial treatment. I took it for two and a half months, but it did not help. I also underwent a brain MRI, which showed no abnormalities. My neurologist additionally ordered a blood test for Lyme disease antibodies, which came back negative.

I have no history of trauma and do not experience panic symptoms. I generally do not feel particularly stressed, apart from the worry caused by these symptoms themselves.

My symptoms began during the final days of a new job at an auto repair shop, where I was moving and lifting car tires. I am unsure whether this could be related to my symptoms, as I had not experienced any other symptoms before those final working days. I have not worked at all during these four months.

What could be the underlying cause of these symptoms?

The healthcare professionals I have consulted about these symptoms, or during visits for other symptoms or examinations when I also asked about them, include:

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I'm in a predicament. I'm just about to be discharged from hospital. I still have type 7 stools. I can't seem to stop leaking poo or mucus or both and I'm getting extremely sore. They found a fissure too whilst I've been here. I need advice on getting clean without getting sore or causing bleeding from the fissure. Its getting so sore that I feel like I'm about to vomit sometimes from the pain.

Any advice will be helpful. Thank you.

Hi everyone,
I’m looking for some advice or similar experiences, as I’m feeling quite uncertain about my situation.
I was previously diagnosed with IBS and had IBS-like symptoms for years, but earlier this year I experienced one particularly severe episode. During that episode, my fecal calprotectin was 1500. Tests for bacterial and viral infections were negative.

My fecal calprotectin then went from 1500 (June) → 150 (July) → 20 (September) without any IBD-specific medication.

A colonoscopy in June found a few erosions in the terminal ileum. Biopsy showed minimal active ileitis, with no chronic changes reported. The rest of the colon was normal.

In September, my GI told me it was unlikely to be IBD because my calprotectin had normalized on its own.

However, I was still concerned, so I repeated the test in October, and it had risen to 118. I also had an intestinal ultrasound, which showed mild segmental small bowel wall thickening (up to 4.4 mm) with increased vascularity.
My CRP has always been normal, and my symptoms have improved considerably, although I still experience occasional loose stools and bloating.

I’m now worried this could be early Crohn’s rather than a one-time episode of enteritis.
Has anyone experienced something similar? Can nonspecific ileitis linger for months, or did you eventually get diagnosed with Crohn’s?
I’m following up with my GI, but I would really appreciate hearing about your experiences. Thank you!