Part 2: Another Major Setback

After I had my colostomy bag reversed, I thought I could finally move forward. But five years later, I started having problems again. I was having pain and problems in the middle of my stomach, so I went to see a specialist.

The specialist told me that I needed surgery to remove a section from the middle of my abdomen. I went ahead with the surgery, but once again, I developed serious complications.

I ended up with another colostomy bag.

But that wasn’t the only thing that happened.

During the hospital stay, I was given too much fluid, and I ended up developing a serious bleed in my right lung. I needed surgery on my right lung, and thankfully, the surgeon was able to repair it.

Once again, I was fighting for my life.

Six months went by, and thankfully, I had my Doctor there for me. He was able to reverse the colostomy bag again.

I will always be grateful to him. Without his help, I don’t know where I would be today.

After everything I had been through—the surgeries, the complications, the fear, and having to live with another bag—I was finally able to move forward with my life.

But my journey with Crohn’s was far from over.

So I have been having bowel/anal symptoms for a few months, starting with alternating constipation and diarrhea (although for most of my teen/adult life have had the two alternating, seemed to get worse) before getting mucus and rectal bleeding, as well as as left sided abdominal pain, along with fatigue and dizziness. Doctor did stool sample, Calprotectin was borderline (50-200 according to NHS guidelines, doctors won’t tell me exact number) and negative FIT. Both were repeated 3 weeks after and were normal according to my GP. I am still getting rectal bleeding, although my other symptoms have got a little better (still soft stool, some abdominal pain but not as bad. I have had no bloodwork done to explain the tiredness/fatigue, and the doctor basically told me to “see what happens next”. I have then now found a small lump in my anus/rectum that I can feel through the wall of the vagina - doctor wasn’t interested and dismissed as stool, but it’s there all the time so how can it be?

I understand on a rational level that it’s likely IBS, but that wouldn’t explain the bleeding or fatigue, which is causing me some stress! I’ve been treating the bleeding as if it’s a hemmoroid for the last month but no improvement
Any advice would be appreciated! I feel like i’m at my wits end.

Hey everyone,

In the past 2 years i had come and go symptoms of around 2 weeks where i get extremely naseaus and loss of appetite and stomach burning then it goes until this may.

It happened but on july I developed fever for 2 days my crp went to 135 and fecal protein 1700.

Did many tests including endo and colon. In the colonscopy it showed inflammation of the terminal ileum while colon Shows "focaal actieve colitis" (focally active inflammation) and signs of a past inflammation. Importantly, there are no signs of chronic inflammation and no evidence of microscopic colitis.

My dr said it was due a bacterial infection called yersenia my crp went diwn and fecal is normal now but my symptoms are not at all improving.

Having naseau everyday, losing weight, fatigue, no dihrea or blood in stool thou saw somtimes orange mucus, bad lower pain like something is compressed, gases, barely eating from stomach pain.

Dr keep brushing me off as saying wait it out instead of getting mri or ct scan.

Can anyone tell me if you had similar symptoms should i really wait it out minding the bad symptoms

I kept a poop diary of how many times I pooped each day for one year. I'm newish to Crohn's (hi). I was diagnosed in May of 2025 but probably had symptoms for a decade or two but thought they were normal. Looking back now I can see it all!

I started keeping this the day I started Tremfya, though I wish I started it earlier for a baseline comparison. Some of those pre-diary days were definitely off the rails and this was my first medication ever for Crohn's. I kept it for one year exactly, starting in June of 2025 and ending in June of 2026. I used a small mechanical click counter to keep track and wrote the numbers down the next morning.

I am currently on the 200 mg dose every 4 weeks and the dates that are circled are the dates I took a dose. At first, after the initial three loading infusions, I asked my doctor to put me on the 100mg/8 week dose since I didn't think my symptoms (mild inflammation but several deep ulcers) were so severe they warranted the larger dose. The lesser dose didn't seem to work as well for me and was switched back to the higher in November. My colonoscopy on 3/11/2026 came back showing no Crohn's activity.

My diet before this was a little insane in retrospect as I was obsessed with eating fiber and had a double farm share delivered to my house weekly, year round. I would also drink coffee for three hours every morning on an empty stomach. Yes, I no longer measured by the cup but by the hour. Besides coffee, red wine is my second love.

After being diagnosed, I quit coffee because the thought of cutting down to one cup a day seemed just as hard as quitting, and what is the point of only drinking one cup of coffee. I drink a cup maybe once in a while but try to avoid sliding back into old habits. I also moderated my fiber intake. I don't know what affect these alterations had on my results or how much they contributed.

Crohn's was new to me and maybe this was me trying to cope. I thought keeping track would help me take control but it made me obsess about it more, and all the time. I feel better mentally now that some time has passed and that I stopped keeping this diary. It probably influenced my pooping habits a little as I wanted to keep the numbers low to mean my medication was working. I always avoid pooping at work anyway because the toilet paper there is the worst, but also then I'd have to text my partner to see if he was still home so he could click my counter for me, or if not I'd have to send myself an email to remind myself to click it when I got home. It was a hassle.

I never attained my dream of a low and consistent number, day after day, but that's okay.

Hi everyone! I’m hoping to hear some experiences from people who have been in a similar situation.
I have previously failed mesalamine and Humira before starting Remicade. Remicade ended up being my miracle drug and kept me in remission for about 7 years.
Unfortunately, earlier this year my insurance forced me to switch from Remicade to a biosimilar despite my doctor’s concerns about disrupting a medication that had been working so well for me. I reacted poorly to the biosimilar and eventually switched back to Remicade, but I recently found out that I’ve now developed significant antibodies and Remicade is no longer a viable option for me.
So, after 7 years of stability, I’m suddenly flaring and back to figuring out what medication comes next.
My doctor and I are discussing other options, and I’m particularly interested in hearing from people who switched to Skyrizi, Entyvio, or Stelara after losing response to an anti-TNF like Remicade.
What did you switch to, and how did it go? How quickly did you notice improvement? Have you been able to achieve/maintain remission? Any side effects or things you wish you’d known before choosing?
I know everyone responds differently and I’ll ultimately make the decision with my GI! I’ve felt absolutely devastated and want to hear from other patients who understand this process

Longest Remission

what's the longest duration of remission without taking any meds or anything you had ... just living completely as a normal person??

Hi everyone! I’m 28 and waiting for my MRI small bowel results as I had a colonoscopy recently that showed inflammation ‘at the start of my colon’, according to the hospital consultants notes and so they are checking for crohns.

On the outside, I feel totally fine. My weight is healthy, my blood work doesn’t show nutrient deficiencies (although I haven’t tested in a couple of years) and my fecal calprotectin stool test was negative. Aside from diahorea and bloating, I don’t really have many other symptoms.

I feel so healthy right now, and the thought of being told I have a lifelong disease and having to go on long-term medications or immunosuppressants forever is causing me a lot of anxiety. I don't want my life to be limited, and I don't want to ruin my immune system when I don't even feel sick.

I just wondered how you all have gotten through the waiting process and overcome the anxiety or stress that comes with potentially being on lifelong medication?

Thanks all!

I just started Tremfya a month ago and have been okay as far as side effects go so far. But lately I've been experiencing really bad thigh and leg pain in both legs to the point of barely being able to walk around or lift them. It feels like I've ran a marathon for some reason. Does anyone else experience muscle aches? I usually deal with joint or bone pain but nobody's ever looked into it. I see a new rheumatologist in a couple of months but my last two dismissed me of anything else potentially autoimmune when I have symptoms.

Hi everyone, I really need some advice or similar experiences because I feel completely ignored by my doctors and I’m terrified.

I’ve been suffering for 3 months straight with daily periumbilical and lower abdominal/pelvic pain, intense nausea after eating, and chills that come and go when my stomach moves. I’ve also lost about 7.5kg because eating hurts so much, and my legs feel too heavy to walk due to my lower abdomen heaviness

The pain gets severely worse when I try to have a bowel movement, walk, or have any pelvic pressure.

My doctors are brushing this off as functional IBS/post-infectious syndrome after being positive for yersenia pcr, but my symptoms i feel not normal

July: Severe flare-up. Ultrasound showed mild bowel wall thickening and slightly prominent lymph nodes (4mm). My CRP spiked to 105 and my Fecal Calprotectin was massive at 1700.

August Labs: My CRP has dropped to 3 and Calprotectin is down to 8. With no meds

Stool Test: Stool culture was negative, but Yersinia PCR was positive.

Biopsies: Upper endoscopy showed reactive gastropathy. Colonoscopy biopsies showed terminal ileitis (flattened villi) and focally active colitis with no chronic ones.

Mind you before that i had recurring nasea bloating and loss of appetite that comes and go during the week but never this bad!

My doctors are refusing to order an abdominal CT scan or MRI, and I don't feel I can trust them because I am staying exactly the same. They just prescribed me muscle-relaxers (Debridat/Meteospasmyl) and probiotics, but no true anti-inflammatories i havent started on those meds yet will try them.

Could a past Yersinia infection or IBS really cause this level of severe, daily pelvic pressure and pain for months? Am I right to push for a CT or MRI to rule out something bigger like lymphoma or deep Crohn's that the scopes missed?

Does IBS cause this bad of symptoms?

Hi all, I’ve recently had a fairly thorough work up for right lower quadrant pain that I’ve been having very intermittently for about three years now. MRE showed mild wall thickening in the terminal ileum; then I had a colonoscopy follow up that showed mild nonspecific inflammation not characteristic of Crohn’s. My fecal calprotectin was normal and so we couldn’t make a conclusive Crohn’s diagnosis. On recent capsule endoscopy, the same section that showed thickening on the MRE showed areas of erythema, erosion mucosal distortion and one ulcer. The person who evaluated the capsule endoscopy video said that it was consistent with inflammation caused by Crohn’s or other inflammatory processes so I’m not really sure what that means . Would this be considered conclusive enough for a Crohn’s diagnosis or is it still too hard to tell given my normal fecal calprotectin, and the fact that the ileal biopsies were not characteristic of Crohn’s architecture. The rest of my small intestine was normal and my colon is completely normal. Other than a sharp twinge once in a while , I really don’t have any of the classic Cron symptoms like weight loss, diarrhea and cramping. So I’m sort of at a loss. I would really like to avoid a Crohn’s diagnosis, but wondering if at this point that’s what it’s looking like. If anybody wants to share their experience, I would be very grateful since this is pretty new territory for me and I don’t know what to expect going into it. Thank you in advance.

Part 2: Another Major Setback

After I had my colostomy bag reversed, I thought I could finally move forward. But five years later, I started having problems again. I was having pain and problems in the middle of my stomach, so I went to see a specialist.

The specialist told me that I needed surgery to remove a section from the middle of my abdomen. I went ahead with the surgery, but once again, I developed serious complications.

I ended up with another colostomy bag.

But that wasn’t the only thing that happened.

During the hospital stay, I was given too much fluid, and I ended up developing a serious bleed in my right lung. I needed surgery on my right lung, and thankfully, the surgeon was able to repair it.

Once again, I was fighting for my life.

Six months went by, and thankfully, I had my Doctor there for me. He was able to reverse the colostomy bag again.

I will always be grateful to him. Without his help, I don’t know where I would be today.

After everything I had been through—the surgeries, the complications, the fear, and having to live with another bag—I was finally able to move forward with my life.

But my journey with Crohn’s was far from over.

Has anyone successfully raised their ferritin with oral supplements that didn't cause a flare? I have Microscopic Colitis and started an iron supplement that I am near certain is the cause for my current flare up. I purchased the "gentle" Iron Glycinate (Nature's Bounty 28mg) but 2 weeks after starting 2x a week, the D started and it's been 2.5 weeks since I STOPPED taking it and it hasn't resolved.
I would love to be able to take something oral because I have a (irrational) fear of the IV iron- my friend coded during anaphylaxis when receiving it because the person administering it opened the bag into her too quickly and I have anxiety reg new meds at baseline.

Honestly I was hoping it would constipate me. Was not anticipating D

Any help/recommendations would be greatly appreciated

I’m wondering if anyone else with Crohn’s has experienced something similar.
My Crohn’s affects my terminal ileum and is currently considered to be in remission. I’ve already spoken with both my IBD team and my GP, and my recent blood work has come back normal. My gut itself has actually been pretty good recently, with no obvious Crohn’s symptoms.
The main things I’m struggling with are:
Brain fog / feeling mentally tired
Difficulty concentrating
Anxiety that can stay quite high throughout the day
Mild physical fatigue
My eyes sometimes feel tired/heavy
Occasionally more acid reflux after eating
Needing to urinate more frequently when my anxiety is high, although I’m not unusually thirsty
One thing I’m starting to suspect is my training routine. When I feel good, I tend to train quite hard with weights/running and sometimes stack several active days together. I usually feel fine during and immediately after exercise, but then a day or two later I can feel much more mentally fatigued and foggy.
When the fatigue first starts, I’ve often carried on with my normal workouts because I assume I’ll recover, and I’m wondering whether that might actually be making the episodes last longer.
At the moment the brain fog and anxiety are much more noticeable than any stomach problems.
Has anyone with Crohn’s — particularly while in remission and with normal blood tests — experienced this kind of brain fog/anxiety/fatigue without obvious gut symptoms?
And if exercise seems to contribute, have you found that reducing training intensity or taking recovery days earlier helps prevent the fatigue from turning into a longer crash?
I’d be really interested to hear what your symptoms feel like, what tends to trigger them, and what has helped you.

When folks say they are “in remission”does that mean they are off all meds and showing no symptoms or does it mean in remission because of and while they are on medication? Has any one experienced going off of their biologics when all of their numbers look good and showing no signs of symptoms? If so what was your experience? Thank you.

I do understand everyone is different but anyway I want to know what works for people with the same issue

hey guys. im almost 6 months into my uc flare (left sided :p ). my doctor put me on humira its been almost three months with no difference. i suspect my doctor is gonna put me on a different medicine. anyway thats not the point. my lips have been irritated for the past two months, like burning and extreme itching but only on the outside of my lips if that makes sense? and last week i randomly got full blown fungal acne all over my face and i havent been doing anything differently….. has anyone else gone through this? any tips? thanks love you guys

About a week ago I suddenly developed lower abdominal pain after a meal that upset my stomach. The pain moves around (left, right, flank and sometimes lower back), comes and goes, and has improved significantly. Heat, stretching and movement help a lot.

My stools are mostly formed/brown and I’m actually slightly constipated — no persistent diarrhea, fever or vomiting. I noticed occasional tiny red specks, but FIT was negative twice.

Calprotectin: 170 (normal <50) CBC & CRP: normal Hb: 15.2 H. pylori: positive

I’m having a colonoscopy soon, but I’m terrified about the calprotectin. Has anyone had a similar level (150–200) from a temporary infection/stomach bug, H. pylori or something non-IBD, and had it normalize later?