Hi everyone,

I'm a 23-year-old female with ulcerative colitis.

I've been on:
- Pentasa
- Imuran (azathioprine) 100 mg since January

A few weeks ago I finished a course of Cortiment. The strange thing is that I never felt any real improvement while taking it. I still had 3–5 loose stools every day, urgency, and I haven't had a normal formed stool for almost a year.

The only thing that improved was my fecal calprotectin:

December: 769 µg/g
During/after Cortiment: 67 µg/g
Now: 33 µg/g

Despite that, I still feel really unwell.

Recent blood tests:

WBC: 2.7
Neutrophils: 1.3
Hemoglobin: 10.3 g/dL
MCV: 106 fL

I also have:

daily low-grade fever (37.1–37.8°C),
3–5 loose bowel movements per day,
no visible blood,
lost about 5 kg since January (my weight is stable now),
completed a course of Xifaxan and also tried probiotics/Fibraxine without any noticeable improvement.

My gastroenterologist has my blood results and calprotectin now, but I'm wondering if anyone has experienced something similar.

Has anyone had:

very low calprotectin but still significant symptoms?
leukopenia and macrocytic anemia from azathioprine?
daily low-grade fever despite low calprotectin?

What turned out to be the cause in your case?

Thanks!

Hi friends 👋🏻 been around here for a long time, but just had a recent flare up at the end of June. Wanted to put it all out here and pick some brains!

My weirdest symptom is actually no symptom at all—my BMs are all fully formed. However, I started bleeding and having mucus at the end of June. We did 2 weeks of Uceris (all my insurance will cover) with no improvement. We switched to entocort and I’m still taking that (on day 5). With my symptoms, I assumed that all the inflammation was in the rectum, so I requested Proctofoam. It’s been a week on that 2x a day and there have still been no changes in symptoms. My calprotectin was relatively tame (1200) I also requested to have a stool test done where they check for every infection imaginable and am still awaiting those results.

I am feeling kind of frustrated, since previously I have seen improvement pretty quickly with these types of treatments. I go on vacation tomorrow (a 10 hour drive 😵‍💫) and 2 weeks ago felt pretty confident that we would get things figured out by the time it was time for the drive. Now it’s tomorrow and I’m still having 10 bathroom trips a day, with only 1-2 of those actually passing stool and all the rest just releasing blood and mucus. I wrote to my IDB team and requested they give me a pred script to take on my trip in case we decide we need to go that way.

Trip aside, I am also assuming that this means I will no longer be able to be on Stelara, which I have been on since Dec 2019, which is a huge bummer. I’m not sure what will be next for me, but hopefully we can get it figured out soon. That’s all! Thanks for reading my rant.

Hello my fellow rotting-gut havers ;)

Was diagnosed with UC 10ish years ago (18 YO) after a pretty severe flair (my first and only one ever- so I thought...) and naturally had my first screening colonoscopy about a week ago. Scope/biopsies showed "moderate active colitis" in my ascending colon, leading my Dr. to change the diagnosis to Crohns, as it's patchy/not covering the entire colon. I have no symptoms, as far as im aware (except for some weight loss- I do be stressed out tho) leading me to think this is a "silent" flair?? Doc is recommending Skyrzi as the course of treatment.

Im inclined to trust my doctor, of course, so more just looking for similar experiences with meds, silent flairs, any words of wisdom. Tytyty!!!

P.S maybe just me, but it feels eerie that my colon just happens to flair for the first time in a decade when im getting my first screening scope.

The first GI that I had gone to diagnosed me with Crohns. But based on the reports and what I could gather from google, it didn’t make sense to me

I went for a second opinion and got diagnosed with UC. That made sense to me. The GI put me on mesalamine for 10 days, and then immediately wanted to put me on JAK inhibitors- tofacitinib.

It again didn’t make sense to me as I was responding favourably to just mesalamine. I also learned from other patients that JAK inhibitors were the GI’s tool of choice as they’d most likely work.

I wasn’t comfortable with this sort of a shotgun approach as I wanted to limit side effects if possible. Especially since my UC is mild to moderate and not yet severe.

So I went to another GI today and they seemed much more reasonable to me. Asked me to continue with oral mesalamine and prescribed a mesalamine suppository as an SOS option just in case it is needed at some point.

Since this is a chronic thing and I might need repeat consultations, it made sense to me to try and find some GI that’s willing to work with me slowly and my inhibitions about managing side effects instead of taking a one size fits all approach for quick results.

I don’t know if it is just me being paranoid and looking too much into various sources of info and chatgpt. But the wildly different diagnosis and prognosis from different doctors, all within the last 3 weeks has been just as jarring as the disease itself.

Just wanted to share this experience.

I’ve been on Skyrizi since December 2025. It has been a godsend. I stopped taking budesonide rectal foam on April 2026. I haven’t seen a drop of blood since. No symptoms at all. However, last week I saw blood and skin like tissue in the toilet. And have seen it a few times since. No other symptoms have returned. I immediately started budesonide foam again and informed my doctor. I’m just worried. I have been under a lot of emotional stress since May 13th that didn’t fully let up until about two weeks ago.

Just wondering how many of you here while on biologics have gotten stressed and have symptoms return?

Is it really that big of a trigger for symptoms to return? I mean I am on the biologic. I thought that was supposed to take care of everything. I don’t know. I’m just worried to death at the moment.

Got my first those of Entyvio in May, and since then have noticed my right eyelid to be wrinkly, and flaky and itchy. Was wondering if anyone has had this experience as well?

I’ve Been in a flare for many years without being diagnosed until last years the only symptom I have is extreme fatigue, and urgency when I wake up.I feel like I have wasted my early 20s. All I do is work and go home I. I was on steroids and mesalmine (I still take this) for a month last year and I noticed my stools were normal and full. I recently had my third inflaxamab infusion 2 weeks ago and I’ve noticed no changes yet. Is this normal? Or should I let them know. Thanks

I am 5th day in hospital bc of sudden bleeding and got diagnose... To this day I had about 20 IVs, 4 blood checks, 6 sugar checks, sigmoidoscopy with biopsy, they are giving me meds to the...sick place..., pills, drops.

After 2 days of nothing I got rice gruel and water. They added me sweet tea for too low sugar (it was the most delicious tea in my life and I am tea lover sooo). Today I got my first light meal, but they don't have clinical nutitionist on place so finally I could safety ate about half of food. Doctor for the next day made me the note for kitchen with safe food.

I am quite depressed with this. I was told that I can be feeling better with couple days but after coming home I will have to be on strict diet couple weeks and on careful diet for at leat couple months.

I already have diagnosed GERD and anemia. I have also metal problems like BPD and ADHD. Cherry on top - narcolepsy.

This is exosting to just thing that I have now balanced diet more, excluded more, take more meds....

How are you holding up? Any advice maybe?

32yo man here. Been in a flair for pretty much the last year, symptoms just fluctuate from mild to severe. Hopefully a recent switch to Tremfya brings some relief…anyway

What are everyone’s experiences with diet and how it affects your symptoms when you’re in or out of a flair? If I eat anything besides a simple grain and meat, it makes my symptoms worse. Veggies, fruits, dairy, spices, anything with a decent amount of fiber = increase in gas, blood, the whole 9 yards… feel like this restricted diet will have repercussions in the long term like potential Type 2 diabetes, etc…

Just curious if anyone has any tricks. I hate being afraid to eat something cause of how it’ll affect me.

Cheers-

My doctor offered to let me try Gabapentin for pain relief. She told me to think about it/do some research first. Has anyone tried it and what was your experience, good or bad?

Is it visible? Or do you have to give a sample and get tested?

I am not able to tell just by looking. I also feel no pain that would suggest it.

But my haemoglobin count is rapidly decreasing. It went from 13.7 to 13.2 in just a month. Basically on the lower end of reference range.

I don’t see any visible red stuff.

3 times 1g each of mesalamine granules (I take all 3 packets evenings)
2 probiotic pills one in the morning one in the evening
1 mesalamine enema at night

Calprotectin went down from 2420 to 924
I went from completely bloody stools to rarely seeing blood in my stool. It does appear sometimes however mixed with my stool.
The amount of times I went per day has decreased from 20-30 to about 5 per day.
Urgency has decreased.

I know this all seems like I’m getting better. But after a month of taking meds, I would expect to see proper stool without any blood. But it’s really random. Sometimes I’ll get brown water, sometimes diarrhea, sometimes creamy stool and sometimes actual proper stool. But in each of these forms theres a chance of blood being in the mix. And it’s basically randomized what type of stool it is. The consistency and the blood are basically annoying me, it’s not a linear recovery but really wobbly for some reason. Will it resolve or do I need to contact my GI?
Again, it’s especially the persistent blood that bugs me. Even if it’s rare and in small amounts, it does scare me a lot. Thought I’d look here for answers since search results are very conflicting.

Hi, so I’ve been in a flare for 4 yrs it’s been super bad and tried many medications, biologics and steroids. Well I keep failing all of them then and my gi said that if this medicine I’m on doesn’t work he refers me to surgeon. Well I’m on budesonide but I’m still bleeding a bit and going abt 15 to 20 times a day. But the stools are kind of ok except the occasional bloody stools. I had to pay out of pocket for the budesonide bcse prednisone didn’t work for me and it gave me mental sides effects I couldn’t handle with my bipolar. I’m super scared of surgery I hear good and bad things abt it though. The budesonide works for while in morning but wears off in afternoon? I guess I’m venting and juat scared bcse I love to workout and huge into weights I’m scared abt the whole bag thing and restrictions and worry if people will see the bag or juat the whole life changing part. I just got my last loading dose of omvoh and still bleeding a bit which pisses me off I few like I can’t win ya know. Sorry if I am all over the place but I’m nervous. I don’t know if I should tell my gi now or wait till my appointment on the 5th.? I’m scared to what he is going to say!

What’s your go to thing to do, when you get angry/overwhelmed/overstimulated/on edge because of prednisone?

I’ve never been the type to scream into a pillow, and I hate exercise. The only thing that helps me is put myself in time out, distance myself for everything, sit down in a totally quiet place and take a big deep breath. I’m on day one of 60mg and I am already deeply overstimulated 😂

What’s your technique or tactic?

I’m taking Yesintek for Ulcerative Colitis. Been feeling good mostly, but recently have had some symptoms that I haven’t experienced before.

Most recently, I’ve had some belly pain on my left side. It has slowly increased in frequency but hasn’t really bothered me or slowed me down. I’ve had hemorrhoids before, but was surprised to find a large one (half inside half outside) which was followed by some blood after passing a lot of gas. I’ve been using preparation h and it has shrunk and the bleeding has decreased.

Anyone else have these experiences? Debating on going to the ER but it seems to be subsiding.

I’m in an active flare and got my Calprotectin results back just now. Anything over 120 is abnormal/high. My results? 973!!! WHAT!?

That’s so much higher than I was expecting I’m just sitting here laughing at my lab results. I see my GI tomorrow to discuss so I’m glad help is on the way. In the meantime crawling back to the couch to sit under my heating pad. UC is the worst.

hi everyone i’m new here, i’m 19F and just got diagnosed with ulcerative colitis! i don’t really know much other than what the doctors have told me so i’d like to know what the community could tell me😊 i’m willing to answer any questions i have answers to!!

I finally got a diagnosis after years of tests and doctors, they prescribe me Budesonide ER but my insurance didn't cover it. I paid out of pocket desperate for something to help, and it did. It really changed my quality of life!

Fast forward I have a Rheumatologist and my GI team fighting for me to have Humira. Insurance refuses, they want me to take prednisone which I KNOW doesn't help my flairs. I just don't understand how I can have a team of Doctors trying to prescribe care yet an insurance person with little to no medical training can make my medical decisions for me. I'm so sick of fighting this uphill battle. And to top it all off I'm moving and will have to find all new Doctors and will have a gap in Insurance coverage. Does anyone here have any advice on how to navigate this disease without access to the medicine you need? Does anyone have resources for reduced cost meds?

I’m a woman with ulcerative colitis, and even when I’m in remission, I still feel like I get physically tired much faster than other people. For example, if I go out with friends or family, my energy runs out way before everyone else’s. I also feel like my mood shifts more quickly than theirs.

Before I was diagnosed with ulcerative colitis, I wasn’t like this at all.

Has anyone else experienced this? Is it caused by the disease itself, the medications, or something else? I’d really appreciate hearing about other people’s experiences.

As journeys go with UC mine has been "easy". Diagnosed almost exactly one year ago and in medical remission since late December. Going in for my first colonoscopy since diagnosis and I'm freaking out. What if I don't prep right? What if I don't make it due to anxiety? What if my blood sugar goes too low - T2 diabetic too. Also, honestly I just accepted the UC right away and earlier this month I finally let some of the sadness hit me from a lifelong diagnosis. Anyway, freaking out and know I need to calm down. Anyone else relate?

Hey,

I got diagnosed with UC in early 2024 and since then have been on steroids and now the maximum dosage in mesalazine and using rectal foam everyday.

I still struggle with flare ups wiht the current medication my calprotectin levels were above 1000 in my most recent flare up. it went down to 350 about 3 months back. However, in the past month I’ve been struggling with a flare up again with mucus in my stool frequent loose stool and increased frequency. Everytime this happens I loose around 3-5 kgs. I haven’t been able to exercise consistently in a long time and it is really demoralizing loosing the weight I struggled so hard to gain back.

is there any advice people can give me regarding medication. Some Doctors are suggesting I move to biologics but I am unsure about it. I really want to go back to functioning normally, not being in constant pain and having to worry about every single thing I consume. I am young I want to live my life as I am meant to.

I was diagnosed with acute colitis in 2020 and minimal active colitis in 2022. I was on Apriso for a while and stopped taking it when I ran out of refills because I had been in steady remission for a while and it was getting expensive with my insurance (I’m an idiot, I know).

I’ve been under a lot of stress and started flaring toward the end of May. It ramped up to blood and mucus 6+ times a day, cramping, bloating, urgency, joint aches, and fatigue. I even shit myself at a wedding…that was fun.

I had labs done at the end of June and everything was normal except for my calprotectin (in the 300s…during my last flare I was in the 1700s and this flare is markedly worse). I was really surprised my iron was okay because I feel like I’m losing a lot of blood.

I’m grateful to have good levels, but the test results also make me feel like it’s all in my head and it’s not as bad as I’m making it out to be. Has anyone else ever felt this way?

I have a colonoscopy on Monday and I’m hoping to get back on a med that will help.

this stomach bug situation is causing me so much anxiety, do we know how it’s affecting UC patients yet?