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?

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?

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.