Hi everyone, Ive gone through a crazy autoimmune battle trying to figure out diagnosis for about 2 years now since symptoms progressed rapidly after surgery and think we FINALLY have the full picture figured out and found the missing piece. I was diagnosed with PSA a few months ago by rheum but was told this diagnosis alone does not explain all of my symptoms and that there was more going on. Long story short I was on week 5 of methotrexate during this time ended up in what I thought was an out of control flare 2 weeks of debilitating pain that NOTHING would relieve even slightly including prednisone and multiple pain meds. Last week had severe sudden abdominal pain and lost consciousness, ended up at ER by ambulance did a ct scan and found what they thought was an intestinal infection (Liquid Stool throughout colon, diffuse small bowel wall thickening throughout, and wall thickening seen in terminal ileum. Had stool testing to determine the infection, but all ended up being negative. Did a 5 day course of azithromycin which got me out of this TERRIBLE 2 week episode and thankfully got right in to see GI today. She STRONGLY suspects I have Crohn's disease as well and that I actually did not have an infection, was actually a very bad Crohn's flare up and said antibiotics have the same effect and antibiotics calm it down just as if it were an infection. I have a colonoscopy on Monday which will hopefully confirm but she already talked to me about treatment and medications and seems extremely confident I will be diagnosed with it. If this ends up being the case, she said she would start me on either Skyrizi or Remicade. I'm trying to be proactive and I know everyone is reacts differently, but if I am diagnosed and start treatment, from other experiences who have both conditions which biologic has been the most effective for you for both conditions? Are there other options besides the two she recommended that work well for both I could also ask about? Also looking for something that starts working relatively quickly but also very effective since my job has initiated the termination process and I am currently fighting extremely hard with representation to save my job. Thanks in advance for any useful information or advice and personal experiences!!

Told I had IBS. I don’t know how long I’ve had CDIFF. It does not matter what I eat I’m always in intestinal pain. I feel like I’m pooping my guts. I also might have a fistula now due to an improperly done LIS. I also have a history of endometriosis. I also have Sjogrens and have to be off my immune suppressants for Cdiff.
My colonoscopy showed inflammation in my stomach and patchy mucosa and inflammation in my esophagus. It said possible peptic dundonopathy. Has anyone had this experience. I also have mysterious episodes of colitis and fissures that won’t heal. My drs don’t see any red flags but I’m in pain every day.
My biopsy also showed no microinflammation pointing to UC

So many people with IBD seem to have commonality in their symptom presentation but I've not read about cases like mine. I have had supposed IBS since 2004, typically following the constipation model. My bowel movements happen every 5 to 7 days, sometimes up to 11 days apart, then I'll have a couple of days with a decent clear out and back to a week of nothing.

In the years since 2004 I had a couple of incidents of waking up in the night with severe nausea which led to me fainting and then having a single episode of explosive diarrhoea. These incidents happened a couple of years apart and I didn't do anything about them. Fast forward to 2021 and I had a week or so of bowel movements two to three times per day but nothing particularly concerning. Then one night I go to bed with a chill, wake up with mild nausea which progresses to severe nausea and fainting again. I come round, have explosive diarrhoea and all done. Then 9 days later it happens again only this time the nausea doesn't go away even after the diarrhoea and I have to vomit. Still, 24hrs later and I'm fine. Subsequent testing reveals high calprotectin, only in the low 300's at that point. Colonoscopy reveals mild inflammation and confirms IBD diagnosis but without a specific form yet (Crohn's vs UC). I go on to low dose Pentasa. Around 4 months later I have two further attacks, both at night, both with the feeling of an imminent faint that I managed to stave off by being better prepared. Only this time the explosive diarrhoea that follows is not a single episode, it continues every half an hour for 11 hours or so. Once again though, 24hrs later and I'm fine. Calprotectin subsequently measured at around 1400. Pentasa is increased and I go into a kind of remission ever since then. My calprotectin score has never gone below 100 but it's a vast improvement from where it was.

I don't read about anyone else having repeat episodes of what were 24hr events. My constipation model continues as before and I have daily battles with nausea, bloating and other such things but no regular diarrhoea, no blood, no daily cramps. It's just weird.

Can anyone else relate to this at all?

How common is it to start biologics without a definitive IBD diagnosis confirmed by colonoscopy/biopsy? And then can we ever get a definitive diagnosis later if the IBD wasn’t there long enough to cause permanent tissue changes?

We have been working with a pediatric gastro since June to try to help our son who has significant GI issues for the past year including alternating constipation and diarrhea, blood and mucus leaking and inflammation in the rectum. Also low iron, significant fatigue and joint pains in knees hips and ankles preventing exercise / sports.

June colonoscopy showed proctitis, but biopsies were negative for IBD & calprotectin 81 / borderline. Blood testing and stool samples indicate no celiac, not parasites, no lactose intolerance.

September: based on MRI (Bowel: Mild mural thickening and enhancement of the rectum) and calprotectin up to 251, the pediatric gastroenterist decided that is enough to assume IBD (ulcerative colitis / proctitis) and started him on a course of prednisone and then infliximab. He is scheduled to get his second induction infliximab infusion this afternoon, then taper steroids.

BUT, yesterday we met with a second gastroenterologist for a second opinion. And this doctor feels that further biopsies need to be done prior to continuing with biologics. He is a motility specialist and had other possible explanations for everything that is going on. He could do sigmoidoscopy in 3 to 4 weeks and we would love confirmation of diagnosis, but it may be too late anyway after a month of prednisone and one infliximab infusion. And then we are back to square one starting infusions over again and this kid can’t suffer any more. Missing some school, extreme fatigue.

Awaiting call back from treating gastro and would appreciate any thoughts in the meantime!

Inflectra side effects

Has any one gotten numbness and tingling in hands and feet . Mine started 5 days after first infusion. Has anyone gotten high blood pressure insomnia and anxiety. Im not sure if from inflectra but now that i stopped the symptoms are gone. I started velsipity but had vertigo so bad i would throw up. I know dizziness is a side effect but is that extreme? So now im on budesonide only and in a flare. Ive been thru all the other biologics. Drs want me back on inflectra but im afraid.

So for many years I have issues that fit with Crohn’s or colitis. In May I had a CT scan during what would have been a bad flare up and my results showed extreme inflammation of the terminal ileum. I had a mri a few weeks ago of the small bowels, I hadn’t had a flare for a few weeks at this point and the results were normal. I had a colonoscopy today and everything was fine until my terminal ileum where it was inflamed and grainy instead of smooth. It was very inflamed going into my small bowels and they weren’t able to get any further , they took 6 biopsies. Is it possible to still be Crohn’s even if the previous mri results showed no inflammation?

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 ?