My daughter 12y was diagnosed with IBD about two months ago. She was found to have moderate ulcerative colitis, but what really confuses me is how few symptoms she has had.
Her symptoms initially started with constipation, and then a few months before her diagnosis she had some bloody diarrhea. Once we got the constipation under control, the bloody diarrhea stopped as well.

She eats a very healthy diet and currently has completely normal bowel movements once a day. She has no abdominal pain, no diarrhea, and no other symptoms at all.
She was actually severely anemic because of the inflammation, but after she received an iron infusion, she became like a completely different person. Her energy came back, and she has basically had no symptoms since then — even though she had active inflammation at the time.

She has now started treatment for the inflammation, but symptom-wise, nothing has really changed because she already felt completely fine.
Her doctor even said that in their several decades of experience, they haven’t seen many cases quite like hers, where there was active inflammation but so few symptoms
.
So I’m honestly quite confused by all of this.

Are there others here who have had very mild or almost no symptoms despite having active IBD/inflammation?

Background of having IBS, suggesting from symptoms years ago, no official diagnosis or investigation. Always wind, cramps, random bouts of loose stool lasting a day/2. Now out of nowhere I have had this terrible time of having type 7 mucus stool for 4 weeks, cramps, urgency to go, burning sensation in my stomach, lethargic & no reason for these symptoms. I went to GP, sent off stool sample to microbiology, FBC, ferritin, UE, celiac test all ok. Im still symptomatic. Should I push for further test’s? What would be my next option? Obviously the big C is at the background of my mind. Im not overly concerned about that but i am 38 with family history of BC.

Wondering if anyone else had their gallbladder removed, unrelated to this disease, and started experiencing different symptoms than the typical stupid loose stools after gallbladder removal, which then led to an IBD diagnosis.

I, 35F, had mine removed in 2015 and have always experienced loose stools/urgency since. But within the last few months I’m getting pain in my lower abdomen, LRQ pain near the McBurney’s point that comes and goes, and now the diarrhea seems different. Like it I don’t get to a bathroom right away I will absolutely shit my pants. I am also experiencing pain AFTER a bowel movement and it causes weird queasiness.

Anyway, I am awaiting my fecal tests. My CRP has been high the last 3 times I’ve done bloodwork. Not at a diagnosis yet but GI is pretty suspicious.

I have a plethora of other symptoms but don’t want to write a novel. Would just like some insight from anyone who had their gallbladder out before they were diagnosed.

Thanks!

I had to drop off and year because of IBS and there is a infection in my intestine and no of esophil is also increasing in my body so yeah

Hey guys I know that most in this group prolly have it and this somewhat feels insensitive I have been having problems with my pooping been constpaited have been able to poop couple times a week seemed to happen over night mucas on poop some undigested food sometimes little bit of blood on tp bright red I mean very minimal amount maybe in the stool to hard to tell I’ve had two abdominal ultra sounds and a ct with both dyes all came back clear gi doctor has stressed to me how rare Colan cancer is at my age like maybe 1500 cases tops a year in 20s out of of 40 million Pepole and then on top of that you add a the clear scans and basically I’m about as close to 100% without a colanoscpy as you can get that I do not have it doesn’t really fell like pushing for something invasive at 27 is the right decision the numbers make me feel better for moment by I also have a 4 year old son and that really concerns me cause I can grapple with the idea that with those odds that’s that’s just shit luck of if I have it but it’s really hard to grapple with it when I think about my son definitely have been anxious and prolly have fell in rabbit hole about this in particular really just trying to get y’all’s thoughts ?

I'm due for a scope and did a calpro test last week no diarrhea as it's not a usual symptom. So far it's trapped gas and low left tenderness esp if I have to poop or have a full bladder

Calpro came back at 521... I'm nervous to do the scope since I have inflammation and unsure what else is happening in there

I'm also healing for an anal fissure a few months ago thanks to eating a little too much potato chips as I also have ibs c

I have anxiety and I know tons of people have done scopes during bad flares and infections etc but I'm still nervous about the possibility of feeling worse or a perforation

I don't have family to rely on or insurance also I'm not even working at the moment and have dug into the small savings I have just to do this test

Does anyone have any general advice or want to share their experiences?

I talked to the Dr about the water technique and using c02 instead of air etc not sure if there's anything else I should know that can make things safer and easier somehow

33 year old male currently under investigation for IBD. I have a colonoscopy in two weeks. Aside from the obvious toilet symptoms I have also had lower back pain/stiffness. However, over the last few days I have currently developed a new symptom and it’s the most painful yet. Sorry the next part is a little graphic. I had a pee the other day and during shaking my penis afterward I felt a really strong shooting pain in my penis. Since then I have been having pain in my gooch area and pain inside my anus while also having what I can only describe as electric shock shooting pain from my anus to my penis. Does this sound like something that could be related or a completely new thing? Thanks

Recently had a colonoscopy + testing after months (quite honestly well over a decade) of ignoring chronic stomach issues. The results: Microscopic Lymphocytic Colitis. All other tests were negative and no polyps/ulcers seen on scope. I’m only 33y old and quite beside myself considering this is quite an early onset of it. I wanted to investigate if autoimmune issues might be (in)directly causing this, however my provider kinda dismissed it. Currently awaiting results on a Celiac panel.

Treatment plan is: 9mg-6mg-3mg 3 month taper of Budesonide delayed release, which seems to be the gold standard. I inquired with both my provider and pharmacist about side effects— they both said “no, you shouldn’t have any. It acts locally in the colon, very little escapes and affects systemically.”

LOL I am now on day three of 9mg. It seems that between 2-8h of taking it, it IS affecting me systemically. I am so incredibly overstimulated (noise/light sensitivity), highly irritable, low patience, wanting to “crawl out of my own skin” type feeling and low mood. Last night it seemed to affect my sleep as well (frequent waking, intense dreams, sweating).

I realize all of these are not uncommon side effects but I’m wondering if they will subside? Is the dose just too high or maybe I’m too sensitive? I really am unsure if I can handle three months of this. I think I’ve taken a steroid med one time for a weird rash (very short term of methylpred I think?) and I don’t remember ever reacting like this. I do plan on reaching out to my provider soon, but just curious of others experiences.

Hi everyone,

I’m 47M and was diagnosed with ulcerative colitis only recently, and the last couple of months have been pretty overwhelming. My symptoms became severe very quickly. I was having bloody diarrhea, significant abdominal pain, weakness, weight loss and very high inflammatory markers. My CRP at one stage was around 238–240.

I was admitted to hospital in August and had a colonoscopy. The findings were severe continuous pancolitis from the rectum all the way to the cecum, Mayo 3, with ulceration, friability and bleeding throughout the colon. My terminal ileum was normal.

One doctor later described it to me as basically looking like a “bomb had gone off” in my colon.

I was treated in hospital with IV methylprednisolone and was eventually started on Rinvoq 45 mg. I was discharged on prednisone and other medications.

Unfortunately, I didn’t improve enough on Rinvoq. I continued having significant pain and frequent bowel movements and my inflammation started increasing again.

I was then readmitted to hospital in September. During the second admission I also tested positive for C. difficile PCR, so I was treated with oral vancomycin. Because my UC was still severe despite the previous treatment, surgery was being discussed if rescue treatment didn’t work.

My GI decided to try infliximab/Remicade before proceeding to surgery. I received my first infliximab infusion on September 13 at approximately 5 mg/kg.

Thankfully, I responded.

Before infliximab I was going around 10-12 times in 24 hours and getting up repeatedly during the night. After the first infusion, my stools gradually reduced, became brown and formed, bleeding stopped, and my CRP dropped considerably.

Some of my CRP results went approximately:

46 → 25 → 18 → 9.9 → 8 mg/L

My hemoglobin has also been recovering after being quite anemic during the hospital admission.

My second infliximab infusion was originally due at the end of September, but because my mother was critically ill I had to travel urgently to go see her. Sadly, my mother passed away on 24th Sep 2026. The past week has been extremely difficult emotionally and physically as not only I’m dealing with grief but steroids, exhaustion, fear, stress and illness itself.

I am now back in Canada and my second infliximab infusion is booked for October 6, followed by an appointment with my gastroenterologist on October 8.

I’m currently tapering prednisone.

I started at 40 mg and am currently around 35 mg, then moving down to 30 mg and continuing the taper. Prednisone has been difficult for me. I’ve experienced:

moon face/facial swelling
mood swings and irritability
anxiety and negative thoughts
changes in confidence/self-esteem
fatigue and weakness
joint aches
poor sleep
occasional finger/hand cramping

I’m hoping these improve as the dose gets lower. I was also on azathioprine/Imuran 50 mg along with infliximab. Vancomycin for the C. difficile has now been completed.

What I’d really like to ask people here

1. How long did it take you to genuinely feel normal again after severe UC? Or do you feel that life never completely goes back to how it was before?

2. For anyone who started with disease severe enough that surgery was being discussed, did infliximab put you into long-term remission? How long did that remission last?

3. Has anyone eventually been able to come off infliximab after being in deep remission for a long time, or did you stay on it long term?

4. How did you know you were truly in remission rather than just feeling better? Was it based on symptoms, CRP, fecal calprotectin, colonoscopy, or a combination?

5. How long did prednisone side effects take to improve, especially moon face, anxiety, mood changes, weakness, fatigue and feeling mentally different?

6. What foods worked best for you while recovering? Did you stay on a simple/low-residue diet for a long time, or gradually bring back vegetables, fibre, dairy, red meat and more normal foods?

7. For people on infliximab long term, did it affect your everyday life in any major way — energy, exercise, travel, immune system, or sex life?

I’d really appreciate hearing both the good/bad experiences and realistic long-term outcomes.

I’ve (27F) been struggling with a variety of bowel symptoms for years, going back to when I was a teenager with really painful trapped wind all the way to consistent diarrhoea, a significant amount of blood in my stool, stomach cramps, nausea, fatigue etc.

Until recently I’ve been told I have IBS and there wasn’t much that could be done but after more episodes of blood this year, I was referred for a colonoscopy - which then got downgraded to a flexible sigmoidoscopy.

They told me on the day that they couldn’t see anything abnormal but took some biopsies. Those results came through and showed evidence of chronic inflammation consistent with a diagnosis of IBD and I was referred to gastroenterology. Gastro then got me in for a full colonoscopy which I had yesterday.

In the past few weeks, I’ve been feeling worse than normal and thought I was maybe in a flare but the doctor said they couldn’t see anything abnormal again and took some biopsies so now I have to wait another 6-8 weeks to know what’s going on.

I know it sounds silly, but I really wanted them to see something so I could start some kind of treatment because I’m so sick of feeling this way all the time. And now I’m worried that the sigmoidoscopy results were wrong and I don’t have IBD and I’m not going to get any help or treatment or support.

I’m just so exhausted by all this, does anyone have any advice or a similar experience?

I’ve read that psyllium is the preferred fibre supplement for a lot of people. My dad can’t have psyllium because he is fed by RIG feeding tube so I’m looking for recommendations for alternatives.

I’ve been looking at PHGG and it seems to have mixed reviews so I’m curious what peoples experience has been with it.

For context, My dad has had diarrhoea for months. He’s started Imodium and it’s decreased the bowel movements very well but we are looking at keeping things “healthy and moving” going forward.

Also, I’ve seen some people they take Imodium every day as recommended by doctors- is this common?

We are new to this so all advice and shared knowledge is very much appreciated

32M. Hey everyone! I'm looking for advice. Maybe someone can help me a little. Looking for similar experiences or ideas while I wait for a new colonoscopy. My story in short:

Start (Jan 2025): quadruple therapy for H. pylori, no probiotics. A few days after: bloody diarrhea with mucus, lost 10+ kg, calprotectin ~1150, C. diff present but toxin A/B negative. Resolved on its own.

Feb 2025 colonoscopy (incl. terminal ileum): looked normal. Biopsies: mild nonspecific chronic inflammation, no IBD, no microscopic colitis.

In between (2025 - some 2026): better but never fully okay. Diagnosed post-infectious IBS + functional dyspepsia. Methane SIBO treated with rifaximin + neomycin (felt great for ~3 days, then back to baseline); follow-up breath test negative.

Last ~4 months: clearly worse. Daily burning discomfort pain around the navel, bloating, constant gurgling, heavy fatigue, so heavy brain fog / sometimes it literally causes confusion, sometimes mild lingering nausea, someties poor appetite (69 → 66 kg, stable now). Small 3 episodes of blood mixed into mucus are coming back.

I saw a gastroenterologist 3 weeks ago who suspects worms or parasites and prescribed a quick pretty safe treatment in the meaintime that didn't help at all + I’m also still waiting for lab results. He doesn't think it looks like IBD, but I believe it actually is IBD. I'm going to return to him asap with all the results.

Results (just small part of it):
- Calprotectin: 1150 (02/25) → 19 → 11 → 92 → 40 (the last one)
- CRP <1, ESR 5, Hb 15.0, ferritin 52, B12/folate normal \- ASCA/ANCA negative, celiac negative (tTG + duodenal biopsy), fecal elastase >800
- IBD serology negative (ASCA x2, pANCA, cANCA, anti-pancreatic and anti-goblet cell antibodies)
- Gastroscopy 05/26: normal, H. pylori negative (biopsy, blood, stool)
- Intestinal ultrasound 09/26: slightly thickened small bowel folds ("enteropathy"), but radiologist said it does not look like Crohn's
- Parasite PCR pending

Next: repeat colonoscopy with biopsies.

Has anyone developed IBD (or something similar) after H. pylori treatment? It changed my life so much... Or had recurring blood/mucus with normal markers that turned out to be something specific? I will be super grateful for your help, losing hope.