TL;DR: Chronic diarrhea, gas and rising calprotectin for months. Three stool tests negative, IBD suspected for years. Colonoscopy biopsy finally found Giardia in the terminal ileum. If your stool tests are negative but nothing adds up, ask about Giardia antigen/PCR or biopsies.

27M. For a few years I've had "recurrent gastroenteritis" episodes, and back in 2022 doctors suspected Crohn's because an MRI showed thickening of the end of my small intestine (terminal ileum). A colonoscopy in 2023 showed lots of nodules there (nodular lymphoid hyperplasia), but biopsies said "reactive, not Crohn's." A repeat MRI in 2024 looked the same.
This summer things got much worse after a gut infection in June/July:

- a ton of gas and bloating, cramps, waking up at night with diarrhea
- some blood (turned out to be hemorrhoids/fissure from all the diarrhea)
- later joint aches and heavy hair shedding

I was given azithromycin for the "unidentified infection." Three stool parasite tests (microscopy) in July: all negative. Cultures negative too.
But my calprotectin kept climbing: 263 (July) → 759 (September), with CRP mildly up. Everyone started saying "this looks like IBD." I spent weeks hoping they diagnosed with smth to start treatment.

Colonoscopy + gastroscopy in October: swollen folds and tiny aphthous erosions across the whole colon, same big nodules in the ileum. Celiac serology and biopsies negative, H. pylori negative, mild reflux and a small hiatal hernia.

Then the pathology came back: "multiple oval, flagellated, binucleated organisms consistent with Giardia lamblia" in the ileum, plus a mild lymphocytic-type colitis "probably in the context of Giardia." No granulomas, no chronic changes, no Crohn's.
So months of symptoms, and possibly years of trouble, from a parasite that three stool tests missed.

Just sharing my experience

Hello, I’m just wondering any anyone else in this group has any gallbladder issues I’ve been suffering over a year now it’s upper stomach pain and on and off fullness/pressure where my gallbladder/liver is I’ve had a couple ultrasounds and they have said I have multiple small gallstones and mildly fatty liver I’ve always had anxiety mainly about the liver because I know liver diseases/psc/AIH/PBC can be a thing with an IBD diagnosis but I’ve been told by a few different docs there not concerned as my liver bloods are all fine and there’s nothing to suggest on my scans that it’s anything other than fatty liver (my diet probably isn’t the greatest either) I weigh about 11st 7lbs too and 5ft 4in so I am abit overweight so it would make sense to just be fatty liver but I wouldn’t say I’m like fat and I exercise a lot I’ve had multiple MRI’s and ultrasounds of my abdomen but not specialist liver scans. I’ve been given the chance to have my gallbladder removed but they couldn’t be certain all my symptoms are linked to the gallbladder but after last nights episode I truly believe it is how quick it changed I was in agony then all of a sudden it stopped so I do think I’m experiencing bilary colic she did tell me I need to think about it as I’ve got colitis and having your gallbladder removed can have some negative side effects too with urgency and pain still I guess I’m just concerned about having it removed for it not to make me feel better or make things even worse and was wondering if any one else on this thread has any experiences with this or have had a gallbladder removal with a history of colitis and had a positive experience/no side effects? Just don’t know what to do for the best. Don’t want to make any of my health issues any worse than they are

I have a rare congenital anomaly. My cecum, appendix and ascending colon are mobile. My last CT scan showed the cecum in the left upper quadrant and the ascending colon moving diagonally across my abdomen. It's causing symptoms such as constipation and overflow diarrhea, pain and bloating. I'm very concerned because my mom had the same anomaly and after years of experiencing the same symptoms she died from it at 68 years old. She was brought to the operating room with an acute abdomen. When they opened her up they found that her colon was gangrenous. The surgeon told us that this process had been going on for years before it got to this state. She survived the surgical resection but never healed and passed away several weeks later. I don't want to follow her same path so I've consulted with a GI doctor who referred me to a surgeon who recommended a right hemicolectomy. I have a second opinion next week with a colorectal surgeon (not a general surgeon who recommended the right hemicolectomy). I'm very hesitant to have a major abdominal surgery to remove healthy/not cancerous colon. I was hoping for a pexy where they just tack the colon in place, but since I have the persistent mesocolon I was told that a pexy would actually make volvulus more likely. I'm worried about just making the diarrhea worse if I have the hemicolectomy. I don't expect to find anyone with this same rare anomaly but maybe people who have had this surgery for Crohn's or UC? I want to hear what life is like post-surgery.

Bonjour,

M31 ans J’ai des glaires constamment quotidiennement depuis 3 ans et demi. Au début les médecins pensaient à l’SII, mais après le retour de ma calprotectine 106 il y a 3 ans puis 188 aujourd’hui.
Le gastro-entérologue pensent à une MICI, il a programmé une coloscopie dans 1 mois et demi.

Je n’ai jamais de douleurs, je suis constipé et je prends des IPP quotidiennement depuis 6 ans. Je n’ai pas peur des MICI seulement du CC.
Qu’en pensez-vous ?

Hey everyone! So i was on Renflexis for maybe like 5-7 years honestly can’t keep track, but i recently switched to steqeyma for my psoriasis as well as crohns because i got psoriasis from the renflexis. I am wondering if anyone is in the same boat. Ever since switching something isn’t right, I am bloating really bad, washroom use has been increased, I am having some pain here and there. When I was on renflexis I honestly didn’t take my diet pretty seriously cause I was feeling great and never got flares, now I am having a crisis that I need to get my shit together and really be mindful of what I am putting in my body. Does anyone have any advice? Or similar story to mine. I would love to hear, dont worry I am talking to my doctor and ik the switching meds can take awhile to start working. Just want to hear some stories or advice if anyone has gone through the same thing. Thank you!

I am currently prepping for my 6th colonoscopy since my diagnosis of UC in 2020. I DREAD them because of the overwhelming nausea I get from the prep, but have never vomited.

Until this evening of course. Drank a little over half of my 1st dose of prep in the 2hr window and could not drink any more due to the nausea. The plan was to give myself some time and then try again.

A little over an hour later and the urge came on sudden and strong. There's nothing better than needing to vomit in a toilet you are currently pooping yellow water into. I turn around just in time to rival the girl from The Exorcist. I have never expelled so much liquid when vomiting in my whole life. The aftermath being vomit on the toilet seat, floor, and my clothes while still needing to continue having diarrhea. This disease is truly humbling.

Anyone have any advice for how to proceed? Internet says to give it an hour before trying any liquids but getting concerned I won't be clear for my colonoscopy and do NOT want to do this again any time soon.

Hi! Im just over 2 weeks post op from my ileucecectomy. I have a possible post-op abscess at the internal surgery site. CTs have ruled out a leak, thankfully, but can't rule out if it is an abscess or seroma. I'm on strong antibiotics and being monitored very closely at home.

I'm supposed to start Skyrizi 1 month post op per my IBD specialist, pending my surgeon's approval. I haven't heard from my surgeon just yet (I messaged him Friday) but was curious if anyone has started biologics post op and if it's safe with a possible abscess/infection?

This process has been so much slower and more complicated than I ever anticipated but my whole care team has been wonderful. FYI I did my treatment backwards, with surgery first and then biologics due to my symptoms wrecking so much havoc before diagnosis.

I (65F) have been anxious for most of my life. I have been recently diagnosed with lymphocytic colitis. although I am pretty sure that most of my anxiety is caused by undiagnosed ADHD, my primary doctor doesn’t seem to believe this is the problem, and wants me on Lexapro for anxiety.

She is ignoring what I told her about SSRIs potentially exacerbating or even causing lymphocytic colitis, but I’m not sure I want to ignore it.

Does anybody have recommendations for non-benzo meds that are safe to take when you have lymphocytic colitis?

Reposting in another sub because I am really looking for some responses from people who might have advice coming from similar situations. Specifically - already being diagnosed with a severe mental illness, going into a state of remission, and then getting a Crohn’s diagnosis.

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. It had been 5 years since I felt any sort of severe instability to that degree prior to me getting my Crohn’s diagnosis. 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. It really feels like my coping skills for my PTSD dont apply when they are merged with the stress that comes with my chronic illness. I end up feeling very stuck in a way I have not felt in a long time.

More recently, I was put on a combination of medications that I genuinely feel on average are greatly helping my struggles - outside of anticipatory anxiety, and flares. 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.

Does anyone have any suggestions for coping skills during active flares for people with compounding mental illness?

Super anxious for the results. Did the pillcam help with your diagnosis? :)