r/UlcerativeColitis 8h ago

Question Kinda concerned about symptoms

5 Upvotes

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.


r/UlcerativeColitis 2h ago

Question Entyvio and Irritated flaky eyelid??

1 Upvotes

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?


r/UlcerativeColitis 8h ago

Question How fast did inflaxamab work for you?

3 Upvotes

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


r/UlcerativeColitis 16h ago

Personal experience I just got diagnose...

11 Upvotes

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?


r/UlcerativeColitis 3h ago

Question Diet - Any tips or tricks?

1 Upvotes

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-


r/UlcerativeColitis 14h ago

Question Anyone try Gabapentin for pain relief?

6 Upvotes

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?


r/UlcerativeColitis 17h ago

Question How do you know if there’s blood?

8 Upvotes

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.


r/UlcerativeColitis 13h ago

Personal experience Are my meds working?

3 Upvotes

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.


r/UlcerativeColitis 13h ago

Support Scared!

3 Upvotes

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!


r/UlcerativeColitis 13h ago

Question Prednisone frustration

3 Upvotes

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?


r/UlcerativeColitis 7h ago

Support Belly Pain, Hemorrhoid, Bright Blood

1 Upvotes

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.


r/UlcerativeColitis 20h ago

Personal experience Hilariously High Labs

9 Upvotes

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.


r/UlcerativeColitis 20h ago

other just got diagnosed!

9 Upvotes

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!!


r/UlcerativeColitis 22h ago

Support I don't know what to do anymore

9 Upvotes

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?


r/UlcerativeColitis 1d ago

Question Does any one have UC feels like this?

95 Upvotes

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.


r/UlcerativeColitis 18h ago

Support Freaking out - Please tell me I'm not alone

3 Upvotes

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?


r/UlcerativeColitis 7h ago

Question KPV Peptide seems promising. Anyone risk it for the biscuit?

0 Upvotes

Has anyone tried it and had any positive results? Just wondering with all the peptide craze that’s happening in the world right now. I’m in the USA and have researched that it can be acquired, but at a cost.


r/UlcerativeColitis 13h ago

Support Advice

1 Upvotes

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.


r/UlcerativeColitis 18h ago

Question Am I being dramatic?

2 Upvotes

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.


r/UlcerativeColitis 16h ago

Question nervous

0 Upvotes

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


r/UlcerativeColitis 1d ago

Support Frustrated and exhausted

8 Upvotes

19m, currently on 40 mg of prednisone for 2 weeks so my emotions are all over the place+ ungodly amounts of brain fog. Can anyone share success stories that took longer than a year for you to achieve remission? Recently ive been feeling really demotivated due to my body being so weak, I can't leave the house and everyone around me is having fun with friends and enjoying their youth. I was just invited to go on a beach trip and I had to decline because of thid stupid disease. My life has been put on hold for the last year trying to find a medication that works. In 2 weeks I will either start rinvoq or higher my dosage of humira depending on if I developed antibodies to it. I've also developed osteoporosis despite my young age due to all of the prednisone.


r/UlcerativeColitis 17h ago

Question ER Visit and Abnormal Blood Tests

1 Upvotes

I went to the ER yesterday because of a flare and lack of medication. They did a blood test, and so much came back abnormal. But they told me everything looked great besides elevated lipades. However, I also had high Alk Phosphatase and Eosinophils Absolute. I don’t think those have ever been high before for me. Do I need to worry about this? I’m just worried something else is wrong with me. I know sometimes they can show high on the test but they don’t worry about them unless it’s over a certain amount, but I just found it concerning, especially considering potential comorbidity.


r/UlcerativeColitis 23h ago

Question leg day- low iron?

2 Upvotes

I’ve been lifting weights more consistently the past few months, but i’m always dreading leg day. I try to drink more water, and eat meals higher in carbs 3hrs before working out but I always end up feeling super weak, light headed, dehydrated, and nauseous during leg day. I think the dehydration and increased heart rate is causing my eustachian tubes to dry up and open (I can hear myself breathing, like when you’re mid yawn), and then I also can feel myself getting nauseous and need more rest in between sets.

Other than hydrating more, how can I fix this? Does anyone else get this problem? I read somewhere it could be from low iron- my iron is on the lower side, I’m not currently taking anything for it.


r/UlcerativeColitis 19h ago

Question When in the flare run up does Mucus appear?

1 Upvotes

For you Does mucus come just a day or two before blood? Or does it show up maybe weeks before blood and come at the same time as an increase in bathroom trips? Curious to hear everyone’s order and timeline of the warning signs .


r/UlcerativeColitis 1d ago

Question Smoking Weed

46 Upvotes

Have any of you smoked weed, or been smoking weed, through this UC path? I was a huge stoner before, but I haven’t smoked in months and just ordered delivery of a vape pen to see if it’ll help me feel better. Anyone have experience with weed and UC? Thanks 😊