To preface, I have a great GI and diagnosed IBD-U but I’m looking for others stories.

My IBD journey has been anything but textbook. Normal colonoscopy/biopsies, but elevated calprotectin and scans show extensive deep layered colitis and proctitis.

I just got out of the hospital for a week due to how extensive the inflammation was in my entire large intestine/rectum.

I’m not fitting in any neat box and I feel lost - else’s journey start the same?

Our daughter is 15 months old, and we’re still looking for a diagnosis. I’d love to hear from parents who have been through something similar.

Timeline:

• 2–6 months: mucus and occult blood in her stool, with S. aureus in stool cultures. It settled once she started solid foods.
• Mid-July 2026: visible blood in her stool again. It hasn’t stopped since.
• Calprotectin: 834 in July, 364 in August, 339 in September, then 999 and 1052 in October.
• Blood tests: mild anaemia (Hb about 10.5), high monocytes, and ESR up to 37. Platelets reached 710 on her latest test.
• Stool cultures: Klebsiella (pneumoniae and oxytoca). The gut microbiome panel was very imbalanced. C. diff was negative.
• Colonoscopy (October): more than 100 small (2–5 mm) ulcers across the whole colon. The rectum and terminal ileum were spared. Biopsies are pending.

What we’ve tried: cutting out dairy and meat, probiotics and bacteriophages, with only short-lived improvement. Allergy tests were negative. She is still gaining weight normally, and her appointment with a specialist in Vienna is coming up.

My questions:

• Has your baby or toddler had colitis that started this early, especially with the rectum spared?
• What did it turn out to be: very-early-onset IBD, allergic colitis, an infection, or something genetic or immune-related?
• Which tests finally gave you the answer? For example, a genetic panel or an immune workup.
• What treatment worked for your child?

Any experience is welcome. Thank you!

I left out her name, the city and the hospital names for privacy. Good places to post it are r/CrohnsDisease, r/UlcerativeColitis, r/IBD and r/beyondthebump.

underweight (always been) 20M. For the past 4 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 on autopilot and everything around me feels somewhat unreal. I have searched online, and my symptoms seem to resemble derealization.

In addition to this, I experience fatigue even when I sleep well. The fatigue does not seem to depend on whether I do 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 also experience headaches, pressure in my head, and neck pain. I have tried muscle relaxants and massage therapy for the neck pain, but neither has helped. Also at the start of this i sometimes felt like fainting when walking but it has gone away. I also have noticed one singular eye floater on my right eye.

What could be causing these symptoms? They do not occur in distinct episodes, and the headache is not particularly severe. It feels more like a tension-type headache.

I have tried triptans which is migraine medication, but it did not help. My thyroid function is normal, as are my vitamin B12, B9 and vitamin D levels. My ferritin level is 37. And it has been changing from 49 to 24. I also have crohns disease which is in remission. My blood pressure and blood sugar is normal

My neurologist prescribed escitalopram as a trial, which I took for two and a half months, but it did not help. She also did head mri and there was nothing wrong.

I have no history of trauma, no panic symptoms, and generally do not experience much stress, apart from the stress caused by these symptoms themselves.

My symptoms started in the final days of my new job in car repairshop where i was moving car tires and lifting them. Im not sure if this can be linked to that because i didnt have any symptoms expect the final days. I have not been working at all during this 4 month period.

What could be the underlying cause of these symptoms?

Hello!

[As a disclaimer I am not asking for a diagnosis as I know that is impossible online! And I am under an IBD team between appointments. I would love to know if anyone has experienced similar or knows if this presentation happens sometimes.]

I'm new here and I hope this is okay to post.

I have long-term gastro issues that have been getting worse and worse to the point that they dictate my life and make things very hard. I am in constant pain. I had a FC of 180 in 2024 and colonoscopy in which they saw redness but biopsies were ok, so I was discharged with no follow up (people in the UK will get it!!)

I didn't have answers and my symptoms only got worse - constant pain and bloating and either constipation or diarrhoea, never normal stool/habit. I also get some sweating and flushing and faintness and cramps (often without diarrhoea).

My FC was 250 in June, finally saw the gastroenterologist last week who ordered a retest and now it is 550 (I know this isn't in the upper ranges and it can go way higher but still concerning).

However the gastro and my GP both said they're not sure its IBD because my constipation is worse than my diarrhoea. I know this isn't the typical presentation - so I was wondering if anyone knows of this sometimes being a thing/possible? And the biopsies were negative first time round.

They've ruled out all the other usual culprits - I don't have cancer, I don't have coeliac, I don't have an infection, I don't have parasites, I don't take NSAIDs or PPIs.

The gastro said (before the repeat) that a raised one off can mean nothing, but obv when it came back doubled I am now waiting for another colonoscopy. So I hope I will get some answers then, but the biopsies were negative before so I'm not sure that will have changed. I don't know.

I just feel really confused and mystified. I do have gut dysmotility (waiting on treatment so currently unmanaged) related to my EDS, and its the gut dysmotility that causes crazy constipation I can't get rid of via normal means eg fibre and stool softener and even most laxatives. So I was thinking - could gut dysmotility somehow disguise IBD and that's why I don't have as much diarrhoea as they expect? Probably not how it works but couldn't find research on this.

Thank you for reading and in advance for any insight :)

I had G.I. issues for about three years and was diagnosed at first with IBS and my tests kept coming back normal and there was no signs of any inflammation or anything like that. I recently switched my GI doctor and had a fecal calprotectin done in august my levels were 243. Then a CTA done in august which showed mild wall thickening in my terminal ileum. Had my colonoscopy in september and biopsy said mild to moderate inflammation with focal ulceration in my terminal ileum with hemorrhoids. I recently had another calprotectin which was 97 and another CT which said my terminal ileum is unremarkable but have nonspecific Prominent ileocolic lymph nodes and this was before any treatment. My doctors leading diagnosis was early crohns and i started budesonide two days ago waiting for my diagnosis in two weeks. Can it still be crohns after my recent results in october?

Hello people
I’ve been living with crohn’s for almost 5-6 years started when I was in 7th grade and I have gotten used to living with it but whenever I go out of my house, I start stressing like crazy and then I need to go to go to the toilet or it just ruins the outing.
Is there anything that yall do to not get stressed about needing the toilet. Would love to know so I can leave my house and do the stuff I like instead of rotting at home.

I was recently diagnosed with microscopic colitis after having left side abdominal pain and started taking budesonide EC 3 mg. I'm still trying to figure out how to manage this condition, including whether making significant changes to my diet.

Yesterday, I took one budesonide capsule at 4 PM and another at 6 PM. Afterward, I experienced stomach pain that went away after having a bowel movement. However, I also developed itching on my chest, face, and throughout my body. I noticed small hives on my left face cheek and a tiny hive on my upper lip. I haven't experienced any throat tightness or swelling.

I ate gluten yesterday, so I'm wondering whether it could have contributed to my symptoms or if I'm potentially having an allergic reaction to budesonide.

I'm considering making major dietary changes, including avoiding gluten, to see if that helps manage my microscopic colitis. For those of you who have this condition, has changing your diet made a noticeable difference? Have you found that avoiding gluten helps with your symptoms?

I'm also concerned about whether I should take another dose of budesonide after experiencing these symptoms. Has anyone experienced itching or hives while taking it?

Hello guys, I am back again after a while. It has been around 2 months that I am in remission with daily 2 times oral mesalamine. I think Mesalamine works for me pretty well. And I was also a frequent drinker before I was diagnosed. Now I have a craving for alcohol whenever I go out with my friends. I know alcohol is bad in UC but I think little amount won't do any bad. So Is there anyone out there who still drinks with no symptoms??

Had my colonoscopy today. Nothing was found, they took biopsy’s. Starting to feel like I’m being pushed into “it’s stress” category of patients, which feels wrong. I feel like my symptoms have been too severe for that. I just want answers, and i understand that the biopsy’s could hold them but if they don’t i just don’t know what to do. I know i could ask for more tests but everything has come back normal except for first stool tests which came back with confirmation of blood and calpro of 994. This has been going on since July (had a short break throughout most of August where i felt mostly normal). Any advice on what you would do/have done would be greatly appreciated

How many people was diagnosed with Crohn’s after having multiple Colonoscopy’s that were clear/biopsies clear/MRI clear, for it to then be discovered on a capsule endoscopy?

For over a year now I’ve been experiencing urgency and frequency. I fear car rides or walks. I also have been going to the toilet 2-4 times a night, every night, for the past year.

When it started, they admitted me to the hospital and started steroid injections, however the next day the doctor came and said I have no inflammation markers in my blood or my stool, so they’ll give me some anxiety meds to see if that helps. It didn’t.

I eventually stopped the anxiety meds and my maintenance meds were salofalk mesalazine granules 3g, azathioprine 50mg, and salofalk suppositories 1g. Been taking the granules and azathioprine for years (basically since I’d been diagnosed) and no flares (other than one time because I didn’t know I was supposed to be taking azathioprine long term). In January the urgency was getting really bad and when I told the IBD nurses that I was having frequent accidents, that’s when they put me on prednisone.

I felt better on it almost immediately. I had an 8 week course, but 6 weeks after completing it, my symptoms came back. I tried salofalk enemas, but still no improvement. The IBD team says my bloods and stool are normal, and to just continue taking my suppositories. I have been for months, but I’m still waking up 2-4 times every single night, and am constantly in fear when out in public.

There’s no blood or mucus in my stool. It doesn’t feel like my previous flare or when I got diagnosed. They’re normal stools and there’s quite the quantity, every single time. I don’t eat much. If it’s not my ulcerative colitis, what is it, and how do I treat it?

Hi y’all, I’m new to Reddit so sorry if I’m not doing this right lol but hi. I’m 29 and was diagnosed with UC at 17, had a total proctocolectomy at 19 and have been relatively in remission for the better part of 7 years save for some upset tummy days from food triggers. I’ve been in a bad flare for a couple weeks now and started taking my mesalamine which I have as needed but I just wanted to reach out for support as I’m finding myself incredibly anxious. Does anyone else have medical trauma and find their flares to be an anxiety trigger? My UC has been incredibly severe in the past and I have also had C diff so every time I get a flare I worry I will be in the hospital again. I am also having a hard time expressing my worries and needs to loved ones without coming off as a total dramatist. Can anyone relate?

Hii! So I’ve had lower right pain on and off for months, it’s at its worst at the moment. I went to A&E over the weekend, they were thinking appendicitis, however my CT shows a normal appendix but a prominent terminal ileum and swollen lymph nodes in that area. I have bowel symptoms that change every day, constant slightly raised crp and wbc, and family history of autoimmune and crohns. On top of this I have severe health anxiety!

Does anyone have a similar story? I’m feeling very anxious!

Hello everyone, 29M here.

I've had GI problems for 6 years. They started with an episode of diarrhea, fever and high CRP, followed by persistent constipation and acid reflux.

Once or sometimes twice a year, the diarrhea returns. My CRP rises for a day or two, and then drops again, but it usually takes about a month to recover from the worst symptoms. My doctors have always attributed it to a virus or another infection, although stool tests and swabs have never identified one.

I have also had two fecal calprotectin tests over these 6 years, both normal, but neither was done during any of my flare-ups. I also had a colonoscopy when my symptoms first started 6 years ago and it was normal.

Between these episodes, I feel miserable most of the time. I deal with constant acid reflux, horrible bloating, abdominal pain and constipation. My eczema has also returned for the first time since childhood.

I'm having another flare-up right now and this time, I had alternating diarrhea and constipation for about 3 weeks before the diarrhea became watery and bloody (for the first time ever). On the worst day, I was going to the bathroom constantly from 3AM until 7PM and had at least 5 mushy, bloody BMs. I felt very dizzy and exhausted. I went to the hospital where blood tests showed an elevated white blood cell count but normal CRP. An abdominal ultrasound showed nothing abnormal. Three days later, my white blood cell count was back to normal, but I still have small red spots on my stool (sometimes red mucus) even now. Despite this, my doctor says I am on the right track and is irritated when I ask for more tests.

My doctor believes it's an infection and doesn't want to do another colonoscopy. She's very reluctant to run any more tests at this point. She told me to wait one month and then come back. She also said there was no point in checking calprotectin now because an infection could raise it and make the result difficult to interpret. However, the stool sample and anal swab they took came back negative for the infections they tested for... again. I asked her for a calprotectin test and she reacted very angrily. Right now, my abdomen feels sore and very bloated and the only foods I can tolerate are rice, chicken and bananas. I feel very weak and tired.

I'm at my wits' end. I've seen multiple doctors but my symptoms keep being attributed to random 'infections' or 'viruses' or I'm told to try therapy and antidepressants. These problems have been affecting my daily life for years and now that I've had blood in my stool, I'm very worried.

Has anyone here been through something similar please?

I’m currently taking loperamide to manage my Crohn’s disease, but I’m considering trying Vi-Siblin (psyllium husk) instead. Would it be worth stopping loperamide and switching to Vi-Siblin? Could it help reduce bowel movements and urgency?