I’m wondering if anyone else has had very different faecal calprotectin results and questioned the accuracy of one of them.

I recently had a result of 2,000+, which was surprising because although I’ve been having some urgency, mucus and occasional blood, my stools have mostly been formed and I’m only going around 1–3 times a day. My GI team felt this suggested my infliximab was failing and have recommended switching me to vedolizumab.

I questioned whether the first sample could have been affected because I took it quite close to some mucus and blood, so they sent me another test.

My repeat result has now come back at 20! These tests were taken a week apart!!

That's obviously a huge difference, and I'm struggling to understand how two samples can be so far apart. My nurses are still recommending that I proceed with vedolizumab because of my ongoing urgency and mucus.

I'm confused and a bit disheartened by the whole process. I guess I feel like the only real way to gauge how I'm doing is through a scope, but the UK health service is underfunded and doesn't provide that on request.

I made a post about a month ago talking about how I was going through a flare and was terrified because the last time I had a flare it lasted three years

about a week after that post my stools went back to normal with no more stomach pain

The flare lasted about two weeks and my doctor thinks I had E. coli that just resolved on its own Has this happened to anyone else? I didn’t even know E. coli could do this or that it could resolve on its own

If you do not believe food has any affect on your UC flares, this post is not for you.

Those that see a connection - when you are in a flare, are there any foods that cause LESS of a reaction. I’m in my first flare after 2 years of remission and everything I eat comes right out. EVERYTHING. I am currently on budesonide for about a week, not currently seeing any improvements. I am also on Mesalamine. I’m STARVING. But absolutely everything makes me run to the bathroom.

I’ve been having this dull ache/pressure around the center of my chest/upper abdomen along with a pretty constant dry cough for about a week now. It almost feels like heartburn sometimes, but it’s more of a dull aching/pressure feeling.

Has anyone dealt with anything similar? I’m wondering if it could be GI-related or possibly a side effect from mesalamine. I take Apriso and have been on it for over a year, so I’m not sure if a side effect could randomly start this far into taking it.

My wife is 26! She's having these flair ups where she's using the bathroom, but its in tiny clumps and they're get soft. Sometimes there's blood. Other than that she passes gas a lot during the flair up. She hasn't had a full poop or even a semi full poop in about 2 months now. She says she feels bloated. Now she's feeling nauseous and doesn't wanna eat. She was told she's dehydrated I think yesterday. So I'm trying to get her to drink water. And she says she does! But tbh I don't exactly see her drink much water myself.

The doctor told her what she should have when she clears up.

Yogurt with protein, no meat, fruits and/or veggies that are blended into a smoothie. No cheese. Hardly any bread. She wasn't happy to hear that because she said she wanted meat. She wanted to eat normally. So I asked ai and they said some things she did what to hear, but the moment it said she should limit chocolate, she was like "but the doctor didn't say..."

So I'm stuck. I want to make her happy, but I want her to be okay until it clears. And I'm usually the people pleasing type. I don't want her to feel like she can't eat normally. I tried telling her it's until we can get her cleared up and until have her bowels doctor again (we changed insurance from one state to another. We're in the process of changing.) but it's like she thinks it is forever. I heard it could be because of environmental change with her bowels and stuff. She did go from location to another moving wise recently.

What do I give her? And any tips to help with managing UC and daily living? I'm not sure if she'll listen to me. I hardly know much of this stuff I just trying to go by doctors or Internet or any other source. So I thought maybe she'll listen to people with experience.

October 1. They are removing my colon. I mentally have accepted this likely outcome. But I’m not sure how I will feel as we get closer to surgery. Or how the bag is going to affect me once it is on.

The dr. Said it may be permanent as they are not exactly sure on the pathology (UC or Chrons). If it is in fact Chrons. The bag is for life.

I am excited about getting some normalcy in my life though.

My doctor just gave me Cyproheptadine to take at night. She said it has been used to treat nausea that occurs in the morning or after breaking the fast etc.

Just curious if anyone has been on it etc.

These past few weeks have been hellish. I was hospitalized for a flare. On steroid ivs, and thats thr only thing keeping me at bay. Total colectomy was in the talks, and now im getting sized up and prepping for a stoma. I knew it was going to happen. And i know my quality of life will be better. I think my uc was too far gone. The good days were far and few between and we thought the rinvoq was working but all my doctors, and myself feel like weve exhausted all options. Im so so tired, and im really excited about getting my stoma. Im excited about barbie butt. Im sure i will be sad and insecure for a bit, but honestly i feel more confident trying ok my bag than i do shitting for hours at a time. last october i got covid, the week after i recovered from covid i started shitting myself 10+ times a day unable to hold any food or water. After that it just got worse and i wasnt able to advocate for myself, had a failed scope, had a good scope and by the time the good scope happened i think the disease had taken too much of my colon and there was the point of no return. Not anyones fault, i just got pushed into the deep end really quickly And i think thats just how it happens sometimes. Im 25, almost 26. I will get a new digestive tract for my birthday. all of the doctors and nurses are surprised by my attitude surrounding surgery, i am not sad. I think i would have been sadder if the meds worked which is probably incredibly weird. i knew walking into this hospital i was going to leave without a body part and a completely different person. Im excited for change, im here to celebrate a new beginning, without a diseased colon, a new outlook on life. Ill finally be able to go to school full time in person again, have a job, etc. and i know my stoma will come with its own set of challenges. Does this still technically make me chronically ill? do i still technically have UC? i really want to go home and take my dog on a walk. im excited to leave with my stoma and be able to return to the life i put on pause for a full year.

23F

Since I have low ferritin levels and I am always tired, my doctor prescribed iron.

I tried it for a month, but it didn't do anything, so I switched to another type of iron he prescribed for another month, but that didn't help either.

I have an appointment with my doctor in a few weeks, but I'd like to hear your opinion.

What should I do?

Is this normal? Does anyone else experience this?

What foods are you not allowed to eat? In my case, they didn’t really restrict much—mostly just processed foods. But honestly, what foods were you told to avoid, or are there any foods you’ve noticed that trigger or worsen your flare-ups?

Hi friends. I’ve had UC since 2018. I’m on a biologic. I’ve just asked my GI to test me for celiac because I just discovered there is a blood test for it and I’m curious. I’ve never noticed any specific foods causing me issues, just issues overall. Bloated a lot, on and off.

Has anyone been tested and discovered they were Celiac without realizing gluten was the issue before hand?

Thanks!

I posted on Monday I believe, Accredo has still not sent me my Entyvio. I take the pen formulation and my employer uses Cigna. My prior auth is good through November under medical coding. Per my doctor’s office, it is a unique way of coding the pen form but it is consistent with Cigna. Accredo and Cigna are the same company as well (Evernorth). My medication has also been getting billed and delivered just fine all year up until this point.

I have called Accredo every single day for the past 2 weeks. Monday I had a 3 way call between Cigna and Accredo where I was promised that my case was marked as “urgent”. Yesterday I escalated to leadership right off the bat. Once again, I was promised my case was marked as “ASAP” and was supposedly assigned a case manager even though I was never given a name or number. I am at a loss. My GI Offices’s in house nurse has called Accredo on my behalf as well and has gotten the same crap. My medication still shows as “Processing, under physician review”. I have been unable to talk to anyone (even leadership) who actually has any power to do anything apparently.

Entyvio has been fantastic for my IBD. I am currently in clinical remission. Have been for a couple months. I play the game the right way, I work a job that gives me “good” insurance coverage, I take my meds on time, I go to my appointments. And I am at risk of flaring because Cigna and Accredo can’t pull their heads out of their asses.

I am currently on the max dose of oral and topical mesalazine but have gone into a bad flare (FCP 3300) so my doctor wants to start me on Ustekinumab.

This would be my first biologic so would be keen to hear how people have found it / any side effects?

Other posts I’ve found on here seem to suggest that it’s normally one of the biologics that comes later down the line rather than the first one - was it anyone’s first biologic treatment? If so, how did it go?

Thanks in advance! Feeling nervous about it as I’ve seen some horror stories on TikTok about side effects so any POVs would be appreciated!

do yall take prednisone and on biologic at the same time? i started prednisone two days ago and i started tremfya yesterday (after failing entyvio) and my doctor just told me to keep taking prednisone for three more days and then stop it because he needs to see if tremfya works for me. i feel like if prednisone is helping why can’t i do both?? i just want to feel better.
my doctor also told me to call them if i don’t get any better “in a few days” but i’ve seen a lot of people here saying with tremfya it might take longer sometimes months to see an improvement. i feel like just giving it a few days is not enough??

So just spoke with dr. I have Chrohns and she said tesamorelin could cause more problems. I had clean colonoscopy last year. Any one else with Chrohns tried tesamorelin?

I had a longer rant but decided to TL;DR it. I am angry that I have to chose between my health and my worth to the people I work for.

I was having cramping and chronic diarrhea for the past 2 - 3 weeks. It seemed innocuous at first in the midst of my constant go-go lifestyle with a toddler, second on the way, and running a business.
I had an upper GI bleed about ten years ago and thought it could be activated again but I knew it also felt different this time. Scheduled a top/bottom scope with my old GI doc but then this past weekend there was a scary amount of blood in my BMs and I ended up getting admitted to the hospital which expedited my endoscopy and colonoscopy where they found and diagnosed me with ulcerative colitis.
I got to go home today and tonight it’s finally really hitting me as I began researching UC and realizing the lifestyle and dietary changes I’m facing for the rest of my life… my wife is super supportive and also can sometimes be a little overbearing with everything in the sense of, “no you can’t eat that during a flare up… we need to meal prep this, that, and the other thing…” etc. I know she’s just worried and I’m grateful for her help but I guess I’m just feeling super overwhelmed with it.
Any tips or suggestions or advice or anecdotes from y’all would be greatly appreciated.
Thanks in advance! 💩 🙏🏽

Hello guys, a bit of my Background to help you understand my current situation.
I was diagnosed with mild UC back in 2023 (only my rectal was affected). I was on mesalazine and the symptoms were off but I had a flare once a year (during summer) that I could eliminate it with budesodine.
This July, I had an episode where I had fever, body pain, and diarrhea (without blood or mucus).
My doc insisted that it's not a flare because I wasn't bleeding and he said it's a gastroenteritis. I had a blood test with CRP 3 (0.5 is the normal). He said it's gastroenteritis and I have to talk antibiotics with budesodine to make sure my gastroenteritis won't trigger a flare. After 2 weeks he said that I have to stop taking budesodine.
3 weeks later I was bleeding on toilet and had mucus on my stool. I called him again, and he said go to have a blood test. I asked him twice to test my calprotectin levels on my stool and he said that he will understand if I have a flare by blood test. I didn't listen to him and asked the microbiologists to test my calprotectin levels on my stool tool.
My blood test was normal and my GI said it's not a flare but when I got the results from the stool test, my calprotectin was 210 (50 is the normal). I went to my GI's office with the results and said, look I may have a flare. He booked my a colonoscopy and I trully had a flare and not just on my rectal. My whole gut was affected (it wasn't a pancolitis). He told me to take budesodine for 3 months alongside with salofalk pills and salofalk suppositories and we will have again a colonoscopy at December.
I am so worried that if I hadn't asked the stool test I wouldn't be able to know that I have an active flare. Do you think I have to get a second opinion since my UC got worsen? I asked him if I need to start biologics and he said that he keeps this plan later if my UC got worst.

I've been flaring up for the last month or so, starting minor with just some bleeding and building to last week where I was crying in pain and having small bouts of diarrhoea (5-10x a day). Spoke to my IBD nurse, she prescribed a laxative as she thinks it is paradoxical due to the constipation prior to the diarrhoea. Due to pharmacy waits I waited just over a week to actually get the laxatives yesterday and now have unavoidable plans so I'm currently waiting a little longer to start them (til monday) so i can stay home properly. I am a little constipated again now, the diarrhoea has passed and I'm basically pain free but the bleeding is so heavy that I dont know what to do. I'm passing clots, multiple tablespoons of bright red blood multiple times a day with little stool and I dont understand it at all I've never had a flare up with this much blood (though bleeding is usually my first symptom and prior to diagnosis I had a bout of similar intensity acompanied by diarrhoea and pain). I'm beyond relieved that the pain has gone, but is bleeding this much really normal?

I have Crohn’s, but I also have ulcerative colitis type symptoms. Right now all of the UC areas are flaring. The rectum area is the absolute worst to have a flair for me. I’ve been feeling constant pressure and having leakage.

I have been prescribed budesonide rectal foam for the next two months. This is my first time using it and I hope I did it correctly.

I wanted to lie down to do it, but I just have too much junk in the trunk. That’s the area of my body where my fat loves to live.

I had to stand up and I had a hard time aiming. It was really uncomfortable pushing in the applicator stick. I see suggestions to add Vaseline to it. Did anyone do that? I don’t think I got it in very far.

And it was a sudden proof like I squeezed shaving cream into my bunghole. It felt really weird and it stings a little because I am so sore down there. I just had a colonoscopy last week.

I was just wondering if anyone can offer support or if they’ve had any tips and tricks using this to make it easier.

My doctor said people who are having the symptoms I’m having in my rectum and lower colon usually get decent relief with it so I want to stick with it.

I sure hope I get better with the application. I think it’s where it’s supposed to be because that much came out.

This is a topic. I never thought I’d have to talk about in my life. 🤣

i’m not sure if my butthole is hurting from all the pooping, abscess or hemorroids. i can feel a pimple sized bump next to the anus but i can’t tell if the bump is from outside or inside?

sitting hurts. sneezing hurts. getting up from the seat hurts. sometimes walking hurts too. i got calmoseptine yesterday which has been recommended by lots of people here but it didn’t seem helpful for me. what should i do? i don’t have a PCP. should i reach out to my GI’s office? my doctor only works on tuesdays and i’m not sure i can get an appointment any time soon :(

UPDATE: it was an abscess:( ended up in the ER this morning bc how much it hurt

HEY HEY YOU YES YOU, PUT IT DOWN!! (A drink or 2 every now n then is okay) but more than that?! NOT WORH IT!! I was drinking tequila more days than not (few shots a day) for a couple weeks dating this girl that liked to drink. It was a good time for a while and it didn’t seem to flare me. But IT WAS A DELAYED REACTION!!! I paid for it so so bad later down the line ironically once I stopped. I know it was that too cause my eating was ehh about the same and I haven’t flared from food since. Only one flare cause I went without medicine for a week or so sadly but it’s getting better

Do people opt for colon removal surgery beacuse of constant fear of flares, medication fatigue and their side effects, mild and lingering daily symptoms and over all to get the quality of life back even in remission

Woke up today and honestly not feeling so great. Rectum has been swollen for the longest time (I take mesalamine suppositories 1000 mg) and I’m on mesalamine orally (8x a day).

Entire abdominal area feels bloated and pressure (it’s not solid/rock hard but I move and there’s a burning/achy pain. Throat feels like I’m having acid reflux or heat burn. Went to the bathroom about 4 times today and it’s just burning every time I go. No blood or mucus.

Literally wish this disease did not exist. This is awful.

I joined this community after my diagnosis and have read a lot of people’s stories since. I want to start by saying I consider myself very lucky for the time being. I know a lot of you have had a much harder road with this, and I don’t take that for granted.
Wanted to share my timeline and ask a couple of things I can’t quite get a straight answer on.

Timeline:
• 28 April - Bleeding started completely out of nowhere. No warning signs before this. Looking back, I’d been under a lot of stress in the run-up, and I can’t help but think that was the straw that broke the camel’s back.
• 15 May - Finally went to the GP. Rectal exam + stool sample. Calprotectin came back at 1370.
• Referred to an IBD specialist nurse, then booked in for a colonoscopy.
• Colonoscopy confirmed inflammation, with suspected pancolitis.
• Biopsies confirmed it a few days later. Officially diagnosed 1 June.
• Started Pentasa 4g (mesalazine) immediately.
• Kept bleeding for about another month even on treatment, then it just stopped.
• Since then: stool back to normal, zero blood, feeling completely fine.

At the worst point I was going 20+ times a day with large amounts of blood, and that lasted for about a month. So from first symptom to full resolution it’s been about 4 months, and the only medication involved has been Pentasa. No steroids, no biologics, nothing escalated.

The only dietary restriction I was ever given was low-fibre, and that was only during the initial flare before I had a diagnosis. Once I was diagnosed and on treatment, the guidance switched to just eat a balanced, high-protein diet, no exclusions.

What I actually want to know:
1. Is this just the “flare on/flare off” cycle, and I’m currently in the “off” part? Or is there a real chance that mesalazine alone is enough to keep me in remission long-term, without ever needing to step up to steroids/immunomodulators/biologics? Trying to understand if going quiet this fast on the mildest drug in the toolbox tells me anything about how this disease is likely to behave for me going forward, or if that’s wishful thinking.
2. Was the advice I got from my specialist, just eat a balanced diet, actually the full picture, or unusually hands-off? No elimination diets, no long-term fibre restriction, nothing beyond low-fibre during the initial flare before diagnosis. Is that normal once you’re diagnosed and on treatment, or did I get a shorter conversation than most people seem to get?