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.

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 😊

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.

Hello again colitis community! I made a post some months back asking about duel therapy regarding Rinvoq and Infliximab, I just wanted to give an update on my situation in case anyone is in a similar place, I know I had a hard time finding info on this but I believe it may be a good last resort option for many people who haven’t found remission yet.

I’ve been taking 1000mg of Infliximab and 45mg of Rinvoq. After a few months the treatment has put me into remission and I’ve been stable on 30mg Rinvoq with 1000mg of Infliximab monthly. While on this treatment I’ve also been taking sulfameth/trimeth antibiotic to help protect me from pneumonia, which I haven’t gotten thankfully! I also haven’t had any real side effects while on this treatment but I’ve been told I am at pretty extreme risk of infections.

After confirming with my doctor from colonoscopy biopsies that I am in full remission we have decided to try and switch me to a different duel therapy with Tremfya and infliximab, my doctor spoke directly with Johnson and Johnson representatives and other gastroenterologists and they also agreed that it would be a safer option long term. I will update how that goes in a few months and if anyone has been on this combination let me know! I believe duel therapy is going to become much more popular as more research emerges as it’s still a better option than surgery I believe. On a last note, in Canada I can only have one drug paid for so my doctor has had to speak to the manufacturers directly to have the second medication fully covered which I am grateful for but may be an obstacle depending where you live.

After a 16 days of never-ending calls and messages to my GI, insurance, and local infusion center, I finally scheduled my first loading dose infusion for this Sunday. Hoping to be back here in a few months posting about how Skyrizi gave me my life back. 🙏

At the very least self-injecting at home every 8 weeks (after three loading dose infusions) will be much more convenient than going to the infusion center every 4 weeks for Entyvio infusions, so I’ll enjoy that aspect of it for as long as I’m on this one!

Curious, if you’re in remission on Skyrizi, how long did it take to feel results? My GI told me it can be slow to feel the effects, but I’ve also seen some posts like “I felt better that same day!”

Little rant post - I was diagnosed with UC in 2021. I’ve been in remission for the last 2 years and I still look for blood every time I go. It’s a habit, even if I haven’t seen it in a long time.

So just our luck, my daughter is 7 weeks old and she’s been having mucus poop since about 3-4 weeks old. Exclusively breast fed. Mucus stools in infants can be a sign of cows milk/food protein allergy passed through breast milk. One of the hallmark symptoms though is the presence of blood. Well I just so happen to know a thing or two about blood in stool and what to look for and sure enough, I notice it in her diapers. Like mother like daughter, sigh. I’m going to miss dairy as it’s never been an issue for my GI system!

Hello everyone,

I was diagnosed last year in July with my first severe flare out of no where. I was on prednisone for months, had to change meds three times and finally settled with Skyrizi in January. I had my colonoscopy last month after having my symptoms ramp up a bit, (as they do around my period) and the Inflamation was looking much better, still there but a lot better then where I started.

Anyways, I've noticed around my period, my symptoms flare, more urgency, mucus, ect. Well I just got my period and was also sick the week before so my symptoms started worsening. Yesterday they started to improve and then I ate a burger for the first time in a year and have had urgency, cramping more liquid moments and literally feel like I've been hit by a truck today. I know foods and Flares have small correlation but I'm so scared I'm going into a flare. I feel awful and hope it improves. Has this happened to anyone and it did improve? Could I have just eaten a trigger food? I really don't want this to be the start of something bad. Any advice is appreciated.

howdy. i just got into a relationship with someone, and it truly is going so well. hes very supportive, not judgmental, and just overall a good support system. we knew each other in the throws of my illness, when it was really bad and now im diagnosed and on infliximab (he goes with me to my infusions because he was curious as to what i have to go through. truly what a babe) and he doesnt show any signs of going away just because i am sick, but i think that is still a real fear. i do trust him 100%. my past relationship i was cheated on, and it was in the worst part of my flare so i think im carrying over a little trauma and lived experience. im just scared of my sickness driving him away, or him getting disgusted about it or thinking im gross because of it. his dad is a doctor, and he grew up hearing a lot about the medical industry so he is used to topics like this. but i still have such a big fear of it. he reassures me all the time that it doesnt burden him or make him uncomfortable because i have to do what i have to do. where do we draw the boundary on what is "TMI"? he knows i have the potential to crap myself at any given moment, and he knows all about it and asks questions and researches it. I feel like i found a gem. I guess there is just something that seems too good to be true, but i know that he cares deeply and the intimacy and connection is easy to come to.

Was on Stelara and in remission for 5 years.

When it failed, I switched to Rinvoq.

After 3 days, I started seeing improvements. It's now been two weeks and I am once again smiling when looking in the bowl! Well-formed, blood-free BMs! Yessssss!!!

Only we get how GOOD this feels...

PS - no other side-effects for me. Yet. Fingers crossed.

Hi everyone looking for anyone else who has had a similar experience.

I am recent diagnosed with UC (April) and had an i day hospital stay in May where I was given 60mg IV prednisolone for 5 days. They then gave me azathioprine and infliximab and discharged me on 30mg oral prednisolone. I was told to taper by 5mg over 6 weeks to 0mg. While I was taking the prednisolone I felt fine no terrible side effects no weight gain or bloating and my UC symptoms had completely stopped. About 2 weeks after finishing my course of prednisolone I started getting strange nausea out of nowhere I put it down to stomach irritation from all the meds. However it continued and progressed to other symptoms like dizziness, fast heart rate, sweating, chills, weakness fatigue, feelings of low blood sugar, feelings of panic/anxiety/impeding doom, trembling hands and no appetite. These episodes would come intermittently and I noticed they often happened after eating a meal. But they would ease off. One day it got very bad and didn't ease off and I was waking in the night in a panic feeling terrible. I phoned my GP and he said it could be steroid withdrawl so he put me back on 20mg prednisolone and all the symptoms stopped and I felt back to normal. However I was to taper again and when I tapered to 15mg after about 3 days I started getting the same symptoms again. I got an appointment with GP and while in her office zi was having an episode, sweating high heart rate trembling and high blood pressure. She send me to the hospital where they did ECG (no abnormalities found) they did blood labs and found no abnormalities. While I was there they said my bloods had gone missing so they took more and added thyroid and random cortisol However I was discharged before those results came back and my GP doesnt have them yet. They told me to take 20mg per day with no taper until I can be seen by my gastro team and endocrinology. Back on the 20mg I haven't had any episodes but I have been left feeling awful like a hangover with the shakes, mild nausea and muscle weakness/pins and needles in feet/heavy feeling in body and unstable on my feet.

I wonder if anyone else has had a similar experience after using prednisolone. I cant help but think something else is going on but very frustrating when the labs dont match!

Also to add when I first started feeling the nausea I called my IBD team as I thought it was azathioprine and they told me to stop taking it which I did but have heard nothing from them since. My UC symptoms remain stable through the whole episode but worried being off my azathioprine will compromise my UC.

So about 1.5 years ago I was diagnosed with UC. I decided it was time to go to the doctor because I constantly was having loose stool/diarrhea and it was happening multiple times a day. When I was first diagnosed they gave me messaline and I was on that for about a year and it honestly did nothing. I had more success with metamucil. About three months ago after my second colonoscopy my doctor decided it was time to switch to Tremfya. Overall I feel like it has been game changing in only two doses (my third IV treatment is this week) where I am only using the restroom once, stools are more solid but still not NORMAL and haven't really had any pains. however when I read the posts here it seems like everyone's symptoms are way way worse than I ever was even on meds. Am I just lucky or is loose stool/going 3-4 times a day (without many instances of pain) normal of UC and the more 'intense' symptoms are less common?

Anyone else diagnosed with pulmonary autoimmune while also having UC? I have had cough for three months no infection no runny nose no congestion just shortness of breathe and coughing. Went to doctor today and said nothing in x-rays no virus or bacteria that probably inflammation of lungs and she prescribed prednisone amd inhaler for inflammation. She said she will refer me to a pulmonary doctor. I have no pain just from from caughing and constant cough. Just seeing if anyone else has had lung autoimmune disease added to their other autoimmune disease.

Thank you!

I have recently been diagnosed with UC, but only my descending colon is inflamed, while everything else is fine, and my symptoms appear to be relatively minimal. Mainly bleeding, feeling sort of clogged, and occasionally feeling like I have to take a bowel movement without actually needing to. Thankfully I have no pain, fatigue, or anything similar. I was just prescribed Prednisone and Mesalamine. I was just hoping for any sort of advice for the future.

hi! i have mild moderate proctitis according to my most recent 2024 colonoscopy. my calprotectin has never been normal. i am on mesalazine (4g oral and 2g enema) which seemed to work well and got me all the way down to under 150 calprotectin in the beginning 2026. unfortunately i just got another stool test and i’ve jumped to 1500 calprotectin. strangely, i feel no changes physically and have in fact been much more careful with my food intake (semi low fodmap currently). my doc last recommended etrasimod to me last yr (i was on aza for a bit but i’m intolerant and had to stop). ive been on prednisolone twice and budesonide once since 2020 but not recently.

i am sure i’ll be put on a new med this time as mesalazine alone simply isnt working anymore. my concern is that i dont feel that bad at all, so escalating to immunosuppressants/iv meds seems a bit dramatic. i dont have any urgency, rarely get stomach aches and since making lifestyle changes this has improved even more. i have also seen that those taking etrasimod generally seem to have much worse symptoms than myself so i’m wondering if it’s too much of a step up?

if theres anyone who also has to escalate from mesalazine after a long time on it (since 2020) pls advise with what worked for u! i am also hesitant of etrasimod as it is newer than the other drugs. is it worth pushing for a more ‘typical’ iv med? note im intolerant to 6mcps

i’ve been on mesalazine for six yrs now so im just rlly scared to escalate. it feels like itll be the beginning of a slippery slope and ill just be hopping between meds and getting tons of side effects. ive been able to manage my ibd thus far and am scared of shaking up the balance i have right now :( any words of advice?

hi! i have mild moderate proctitis according to my most recent 2024 colonoscopy. my calprotectin has never been normal. i am on mesalazine (4g oral and 2g enema) which seemed to work well and got me all the way down to under 150 calprotectin in the beginning 2026. unfortunately i just got another stool test and i’ve jumped to 1500 calprotectin. strangely, i feel no changes physically and have in fact been much more careful with my food intake (semi low fodmap currently). my doc last recommended etrasimod to me last yr (i was on aza for a bit but i’m intolerant and had to stop). ive been on prednisolone twice and budesonide once since 2020 but not recently.

i am sure i’ll be put on a new med this time as mesalazine alone simply isnt working anymore. my concern is that i dont feel that bad at all, so escalating to immunosuppressants/iv meds seems a bit dramatic. i dont have any urgency, rarely get stomach aches and since making lifestyle changes this has improved even more. i have also seen that those taking etrasimod generally seem to have much worse symptoms than myself so i’m wondering if it’s too much of a step up?

if theres anyone who also has to escalate from mesalazine after a long time on it (since 2020) pls advise with what worked for u! i am also hesitant of etrasimod as it is newer than the other drugs. is it worth pushing for a more ‘typical’ iv med? note im intolerant to 6mcps

i’ve been on mesalazine for six yrs now so im just rlly scared to escalate. it feels like itll be the beginning of a slippery slope and ill just be hopping between meds and getting tons of side effects. ive been able to manage my ibd thus far and am scared of shaking up the balance i have right now :( any words of advice?

ps im uk based

Started mercaptopurine about a week ago its been at first but now i'm feeling extremely unwell after having my dose a few hours ago, i felt like i was gonna almost vomit that i went to the toilet! i was on azathioprine before and that had me vomiting for 3 days after being on it for about 3 weeks. Will it pass or should i stop taking it?

I was diagnosed with ulcerative colitis about a month ago after a severe flare that landed me in the hospital for two weeks. I’m now on week 4 of a 7 week prednisone taper and taking mesalamine. Overall I’m much better than I was.

My main issue now is that every morning I have 3-4 bowel movements first thing, usually with cramping before each one. After that, I’m completely fine for the rest of the day and don’t usually go again.

Has anyone else experienced this while recovering? Is it normal, and did it eventually settle down as you healed?

I had my colonoscopy and a scope down the throat on the 20th and obviously had a sore throat from it and now my nose cant stop draining and I just feel like shit for the lack of better words. For the past two days The sore throat went away now its this running nose and sneezing i cant get rid of I work tomorrow and I used up my sick time/ PTO for the prep day and we run on a stupid point system (Healthcare related job) and tbh i do not want to get fired because apparently it just takes 8 to fire you (im at 8.50) Has this happened to any of yall before im taking day time cold medicine and no dice ​

I (27F) have been diagnosed with UC for about two years now. I only recently have gotten on Skyrizi and experienced periods of remission. I’m very lucky that my flares are not awful, just lots of GI symptoms. I find myself wondering when I’m having these symptoms if it’s from something else, like a normal stomach ache or upset stomach for a few days. I am just not sure when I should call my GI doc and consider it a flare.

I am wondering if other people have signs that they are in a flare and not suffering from something else?

Thank you for any input!

I had to take a quick squat poop outside, and I'm so lucky I didn't sit on the plant, but only my hand hit the plant, something called Urticaceae hit me, its very common in Finland

Looking for folks who might have had a similar situation. I was in total, microscopic remission on Inflectra for well over 5 years. I started Wegovy in February of this year and only had mild side effects, specifically constipation. After moving up to the higher dose I realized I was flaring and not bleeding from hemorrhoids. I stopped the shot 3 weeks ago. I had a sigmoidoscopy this morning and they found severe left-sided colitis. I was told the Inflectra failed and I’m being switched to Entyvio.

I’m curious if this is just coincidental timing or if the wegovy could have played a part in my flare up. Thoughts welcome!

I have what my doctor's believe to be UC, they don't want to diagnose me immediately because it is a lifelong, life changing and potentially debilitating disease (What they have said to me) I have been on Mesalazine for 18 months, two oral granule packets and one suppository a day.

Due to a mess up at my GP, I have been without my oral granules for a week, (8 days exactly), and whilst there has been some changes to my bowel movements it was mainly fine until today really (some flare up issues started yesterday with loose stool) of where i have had to go multiple times a day, with loose stool and blood, barely able to walk the block before needing to go. Luckily my medication is back today so the first day I have been able to have a full dose.

Is there any timeline of when I am meant to feel better? I am meant to be going to my brother's stag do tomorrow evening until Sunday, will I be well enough to travel tomorrow and Friday?
At what point do I need to call the hospital/gastroencology helpline with my symptoms? Do I call immediately when showing a flare up like this or do I wait to see if it settles now with my medication?

Whilst I have had bouts of constipation during my medication (once) this is the first time since when they started testing and treating me in 2024 did I start having symptoms like these so I am a bit worried about some things:
Short term- missing my brothers stag do
Long term- Damage to my intestines and body, potentially needing surgery or a stoma.

I probably should research this condition but as I have said my doctor has not officially diagnosed me so I have not actually received any treatment or anything like my brother did when he got diagnosed with Crohn's.

I got diagnosed with mild to moderate pancolitis about 10 days ago.

Symptoms are mild, and there’s no blood.

I’ve been using mesalamine for the last 10 days and though it hasn’t seem to make much progress, I think it has started to, kind of.

My GI is pushing me to start using tofacitinib along with mesalamine going forward. And I am worried about the long list of side effects that it has.

Should I take a second opinion? Or is it standard process?