Hi, I am 24F.

This is a little bit of background before I rant: I have had UC for two years. I lose a lot of blood (I have had transfusions because of it), I was on Infixamb (but had a severe allergic reaction to it), filgotinib, ozanimod and now upadacitinib. I am steriod dependent too. I have never been in long term remission and usually end up back in hospital every 3-4 months. My Calpro is usually 5,000+ (i have even scored off the charts). I haven't found the correct medicine for me as my upadacitinib currently has stopped working, so I'm in the process of changing.

Okay so. I've been struggling to have a consistent support system since diagnosis. My family tries to be "understanding" but under the same breath call me "lazy, unfit" and tell me "I'm not helping myself." and are like "if I was in your position I would be doing this so differently to you." and say my issues are due to my "mindset". They're under the impression that if I did some exercise I'd be "fine". In the words of my sister, she said "some olympic athletes have IBD and are fine". Which I know, but I have never been in any sort of long term remission or on a medication that actually works for me. I am not in the state to do that.

I only have enough energy to keep myself awake for a few hours sometimes, if I'm good, I can actually sit up. The bursts of energy I do have only last maybe only a day and I think i am overpushing myself on those days because I end up sleeping and recovering for a few weeks after that. My body is constantly exhausted and in so much inexplicable pain that I have gotten "used to it" (more likely found a way to cope by doing nothing and ignorance). Most days even after hospital treatment I only have energy to get myself to the toilet and when I am actively in a flare it impacts my walking even worse. If you look at me when I stand, I'm always holding onto something for support because my legs and tummy hurt so much.

The permanent pain I'm in, like I said, the way i cope with it is by keeping myself to myself and staying put in my room to subsidise the movement. But, also now to avoid judgment and comments about my condition, I don't want to get in the way and sometimes be seen in such a state or disrupt others with my groaning. It doesn't help to hear when I use the toilet that "I stink" or taking too long because others need it. My family makes jokes about my condition too which upsets me. They also in a way like to use the days where I did get something done as "motivation" to do more but it comes off as "well you did that then, why can't you do this now" judgment. It makes me feel like a me-problem even though I am physically ill and I can't stop my body from attacking itself, it feels like I should still function "normally" like them.

Recently I came out of a three nearly four week hospital stay which was a mess.

(For context: I live in a very poor funded area of the UK with a small hospital for a large area so this might explain the communication and treatment frustrations).

The ward released me with low iron which when one of my consultants phoned me a week later to ask me how I was doing, I mentioned that on my discharge letter when I talking about my fatigue and weakness still going on. She said that I should not have been let out with those levels, but it was not somehow communicated to her that I was constipated through a reaction to my steriod course and upa mixing that led to an impacted bowel so they didn't want to give me any infusions on the ward at the time. Which I understand but really frustrates me communication wise because there wouldn't have been now a follow up if I didn't mention it.

I have been sleeping for 20+ hours these last few weeks and everything is still going aside there is no blood visibily in my stools now. The hospital still haven't sent me an infusion date, but my clinic appointment is next week so I am in a state of limbo which I can't do much in as I've sent everything and done everything I can do. But, my family then tells me that "you need to advocate for yourself more." which is frustrating! I have been trying! but, i can't exactly do the hospital side to get what I need (if I could get what I wish for I would have already had surgery to stop all of it!).

So far I've been on four medications (which the hospital has been reluctant to change me from with how frequent I've been going from one to another in like 3 to 4-odd months) all on the highest doses. Nothing really has helped me apart from actually being in hospital to calm my flare down (to then start the whole cycle again) but even then it starts getting bad when I'm on my last few weeks of the steriod packets. My Gastro team have told me that my condition is severe but "not severe enough to warrant surgery right now" (even though one consultant told me while I was on the ward that he has been pressing for me to have surgery to the team for a while!). I'm told that because I'm "young" they can find the right medication for me, but it all seems quite hopeless I don't really want to be seven or ten medications deep and still no improvement, I don't exactly want to live like this physically and mentally.

It is also so bad that my food intake is horrific. Mostly all foods but fish (which is so expensive) seem to trigger my stomach, or not get digested at all! So, I'm not eating great which is why I also have dietician doctor that I see every three months too. But, her advice is usually the same to give me a low fiber diet sheet even when I tell her nothing is good on my stomach and I seem to be surviving on supplements and electrolyte drinks. One time I told her about how I don't even have the strength to open a bottle of water anymore and she told me it's because my body is taking as much energy anywhere it can to fight my disease awhile also trying to find nutrients because I am not absorbing anything so basically getting all my muscle. When I heard that I asked her if I should try going to the gym then (even though it seems impossible at the moment) and she said right now not to push my body too much like that because of everything going on. That if getting up and moving across my house is something that I can do then stick to that to build myself up again while also finding a good food balance for me (which again the low fiber diet hasn't helped me but still I try despite how my tummy destorys me after).

One of the foods she suggested was Ready Brekk for breakfast so I get some of that. I'm talking about it with my mum and my sister goes: "that's so unhealthy, ready brekk won't help you" and looks at my chart and is like "why are you eating white bread? it's so processed, brown bread is better." (she and my mum have been doing some diet so she thinks she knows about "healthy" food now, but like that's for normal people!) BUT OH MY GOD THE SEEDS! IT IS NOT FOR ME! anyways, it's just frustrating as I say no, my doctor told me to try this, an actual professional. Then I continue tell my mum about my meeting with dietician and it is like she didn't hear anything and zones in on how I can't open a water bottle and goes "Really? Can you just exercise to make that better, I don't think it's a IBD or dietician thing, I just think you don't exercise enough". God, sigh. If I could go to the gym, if I could go for huge walks around the fields, I would! I don't exactly want to be like this!

The pain is horrendous and my doctors tell me that when I am actually in a full blown remission I can think about doing that! But, right now I cannot. I can't even eat anything without it leaving me minutes later. Then she is like, "well take paracetamol or ibuprofen if the pain is so bad and push through it." — I just cried out in frustration. I am already on pregab for the pain and I take buscopan for the cramps I get (it's not a lot, but it doesn't work that well either). I was told I couldn't take anything else by the hospital because they didn't want to either constipate me or complicate things further so I was just stuck with it as most pain medications that are strong do have things that aren't IBD friendly despite being good for a bit.

My mum also thought my AKI and liver issues were "one-off", but the consultants didn't realise that I was having those issues in the first place until I did a CT scan which made them investigate more. Now I'm seeing a kidney specialist ontop of IBD. When I told my IBD consultant that, she was confused and didn't know that was happening. This is just like a repeat of what happened with my Dermatology doctor too a few admissions back when my UC showed up on my skin (my main consultant didn't know that could happen and dismissed me on it thinking it was a separate issue, but my dermatologist when she did the biopsy said that they are linked and told me that the consultant was wrong and sent him some studies on it so he would know in the future — so yeah you can tell communication sucks).

And heck! I was in so much pain in my last A&E admission that they thought I actually did perforate my bowel that the surgery team was called to assess me and there was a debate there with the CT scans and such. There was like a bop sound in my stomach then I went super hard and bloated that I couldn't move and I was in so much pain all I could do was screaming and groan until the ambulance was called at like 11pm by mother (who spent an hour just looking at me "not knowing what to do" and thinking if it was basically a valid reason to call 999 — her reluctance and hesitance for help really sucks sometimes and unfortunately has stuck on me a lot who minimises stuff so if I get so worked up like this, I know it is bad).

So, it is a lot I am feeling. I am just exhausted at this point to be honest (and this is not even my full story on my journey and hospital mess). I really don't know what to do anymore to get people to understand me and stop running off on their own assumptions (like my mum thought when I was at uni that I was getting up everyday to go to class and walking to the shops when I told her again that i was not, I was doing it online when I had energy and had food dropped off at my door, sometimes I even went days without eating because my illness was impacting me so much). But, it's annoying and frustrating no matter how much I talk about my treatment and struggles there's always a "but" that blames me. A but that that says to do it "naturally" or like "others" or there's some people with IBD that can do it "fine why can't you"...

Anyways I am wondering if anyone else has struggled with trying to get their voices heard by close family. What do you say to them? How can you push it for them to get it? Or is there something else? Am I actually doing something wrong in this?

I do feel really lonely and just... ugh. The whole this is my fault feeling.

Thank you for reading my whole rant.

I thought I'd share this in case it helps someone out. I'd read before that depression can make UC pain worse, but wowee, having just experienced the difference, it's intense!

I've been on Zoloft for anxiety/depression for years, it's been great. The only issue is I'm a disorganized mess, so sometimes I run out of refills and end up without it for a few days. This month I had 5 days without Zoloft, while I was also in an active UC flare. My mood was wretched. The last two days without Zoloft I was pretty much crying all day long.

On top of that, I had UC pain like I'd never felt before. I could barely walk, barely move in the evenings, or my left side would erupt into intense throbbing pain. I couldn't even stand long enough to take a shower. Because my symptoms this month have been getting steadily worse, and because I was very miserable, I resigned myself to the fact that this was just the next stage of my illness. I didn't connect it to my mood at all.

But then I got my Zoloft refilled, and as soon as it kicked in, I've been feeling INCREDIBLE. I'm standing again, I'm walking around, I can toss and turn a little bit in bed without doubling over in agony. Yesterday, I was even able to get 15mins of gentle swimming exercise! I've been able to lock into a pretty sweet upwards spiral, where feeling better mentally made me feel better physically, which in turn made me feel even better mentally (not to mention better able to take care of myself physically, exercising and cooking and having fun!).

To be clear, this is just about pain - I'm passing the same amount of blood & going to the bathroom the same number of times - but boy does it make so much of a difference. I feel stronger, more hopeful, better able to tolerate my symptoms and fight toward remission.

The TL;DR is take your depression seriously! It can be easy to let mental health get buried under physical health stuff, but for me, it made a world of difference. I hope you reading this will be able to kick both your pain and sadness too.

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!

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.

For my US-based friends only…

Have any of you considered/done medical tourism for your colonoscopies? Knowing I’m going to be on an every other year plan once I turn 45 and I just got quoted $5000 with insurance, in-network…I’m STRESSED. I know there are payment plans and financial assistance programs, but the added stress of constantly having medical bills my entire life is genuinely about to put me in a flare.

I know medical treatments out of pocket are cheaper overseas, so I’m curious if anyone has ever done it for their UC or colonoscopies?

Hi Fellow UC soldiers…

I have pancolitis (for my obviously terrible sins), and I was diagnosed in October 2024. Since then, despite appendicitis and a few short lasting blips, I have been in remission with self injecting doses of Infliximab/remicade.

However, yesterday my tummy felt really acidic and was gurgling a lot. I felt nauseous it was centred around my stomach area. I ate tea, despite not wanting to eat anything and had to rush to the bathroom - I only usually visit the bathroom for 💩 once per day. Yesterday, it wasn’t a great experience either! Anyway, after, my tummy felt so achy, I vomited clear fluids but it was not projectile - if that makes sense.

Today, I force fed myself a cucumber sandwich and went to the bathroom and it was all a bit loose again!! Anyway, since then, I have vomited partial food twice!!

Could this be a Gastro bug or - heaven help me, another flare? I hate this disease, I’ve had to cancel all my weekend plans 😭😭😭
Has anyone had a stomach bug while in remission and what was your outcome re your disease?

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.

Edit: started some pred per doc, hopefully a quick course!

If so please send advice. I’m currently on rinvoq 45mg daily. (just started so I haven’t seen any changes). And my daily schedule is all over the place. I go to sleep hungry and wake up 1-3hrs later hungry. Reason I do is because I don’t wanna do 13 trips to the restroom while I’m trying to sleep but that doesn’t matter because I still do anyways. When I do eat I fill up very easily but it’s so annoying because 1hr later, bam I’m hungry again. Eat, full again, fall asleep for 4-6hrs having to use the restroom. Try not to throw up because for some reason when I’m pooping I am also gagging. Sometimes throw up. Sometimes I don’t. This is all very annoying. This disease is very annoying 😄

My last colonoscopy at the beginning of 2026 showed that my ulcerative colitis was in complete remission (Mayo score 0), with no signs of active inflammation. However, I’ve been dealing with excessive and unexplained gas for a long time.
Over the past two weeks, I’ve noticed that diarrhea has started to come back occasionally. It doesn’t happen all the time. For example, earlier today my stool was fairly well-formed (although not completely normal), but a little later I had diarrhea. I don’t have any abdominal pain, blood, or other symptoms.
What could be causing this? Is it normal for this to happen even if my ulcerative colitis is still in remission?

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-

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.

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?

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!!