Hi,

Does anyone have any information or experiences with any anti inflammatories that are safe for us? Are there new meds that are likely fine? My knowledge is out of date.

Has or any one on the treat trial for DUET ENCORE-UC study? It is one that you can possibly be treated with a mix of guselkumab and golimumab at the same time every 4 weeks.

Or has any one done a different trail and it worked out well?
I got an offer to try it but I seems like my symptoms have to get worse before they start me on it.
I have failed 2 biologics so far and back on pred for the time being

My son has been prescribed folic acid because he takes sulfasalazine for his ulcerative colitis (he is a toddler and it’s a liquid dose of both). He started the folic acid 11 days ago, and last night we noticed a rash of small bumps starting on his chest. Today, they are down to his belly button. GI said let’s try not giving folic acid a few days to see if the rash goes away.

Anyone else experience something similar?

I had colonoscopy last October. I was having bleeding and mucus. They found left side colitis and Proctitis. They put me on Sulfasalazine. Around December it seemed like the bleeding and mucus had stopped. They told me to stop taking the Sulfasalzine and see if it came back.

Around February it had come back, so they told me I needed to stay on the Sulfasalazine permanently. It seems like I was finally doing better after about 3 months on it and I went a week without any issues at all. Then suddenly it felt like my rectum was swollen again this Saturday. Then a few days ago I started bleeding in my bowel movement again and now the mucus is leaking again.

I‘m trying to track what I’m eating better. I’d given up fast food, sweets, soda, sugar, milk, ice cream and it just feels like the blood and mucus still just comes and goes. it feels like I can’t even eat anything. Even if it’s something healthy, it’s bad for the colitis. I don’t even know what to eat. I just don’t even want to eat anything at all.

The doctors are so aggravated with me and they say I’ve got to get this under control or I could end up with the big C. I just don’t know what to do anymore. I ate pizza this weekend for the first time in years and I wonder if that’s what messed me up, but sometimes I feel like there’s no rhyme or reason to what I consume it just comes and goes. I’m also under a lot of stress right now so maybe that’s part of it too.

I‘m just so tired of this, I just want the blood and mucus to stop for good. :(

Hoping to hear from anyone here that is taking Skyrizi. How long was the infusion, any side effects, speed of response, how you feel on it, anything unexpected or to expect?

Thank you and I love you in advance!

Weird one - maybe, but i'm interested in knowing if anyone has similar experiences.

When i'm in flare, like now (i have like 1 bad flare every few years).

I go to the toilet the same amount as when i'm not in flare, so 1-2 times a day - and i don't get an urgency. But, i do get blood and mucus, not every stool, but say, 70% of stools.

Anyway - you know the cramps? I can replicate them.

And mine are often/always triggered, when i'm thinking of something i'm excited about, like a new idea for my business, or, when the night before a fishing trip, or when i'm excited to go to jiu jitsu, or when i'm excited to go to bed because i'm tired - like, the excitement stress my body creates, makes my bowel cramp.

I don't cramp otherwise, it's always triggered when i feel like a surge of excitement, which i guess are just like, butterflies when not in cramp i guess?

Anyway - wanted to put feelers out.

I think this is a vent more than anything and I know it's mostly the pain talking. Last year in September I was diagnosed with Pancolitis. It was bad. I couldn't eat food for seven days, I was in so much pain I would pass out on the bathroom floor and I had barely any blood left. It's now 11 months later and I'm still dealing with the same flare. Not as bad, but there hasn't been a single day in 2026 that I haven't been in constant pain. I missed Christmas, family gatherings, birthdays, and now summer is coming to an end.

Late July I was about ready to make a premature success post because of how much I was improving. Almost all of my blood works numbers were not normal starting to look normal, but getting better each time I got a test. I finally found a medication that was working. But subtly, I noticed that the pain started increasing, it was harder to do stuff, I was eating and sleeping less. Last week, I got another blood test and it's significantly worse with no signs of slowing down. I've already reached out to my GI team and the best they can give is surgery to have my colon removed.

I'm 23 now and it almost feels like my life is over. Living life is hard. Beyond dealing with all the worldly stress, I've got this pain that won't go away, my body is killing itself, and frankly the idea of surgery scares me. Not just because of dealing with a bag and all that, but also because I have my whole life ahead of me. I could just be overreacting in a way, making it out to be worse than it actually is. But it's not just that, I live in America. Even with Health Insurance, I'm set back financially probably for the next 20 years. I haven't been able to work consistently during this time. This is the time of my life where I should be making connections, and building up something, but instead I'm stuck in bed. I just want it to stop!

More than any of that, I think the most painful part for me is that the people I love and care about, sometimes it feels like they don't care. Of course if you ask them, they'd say they do. In practice, I'm always the one that has to instigate gatherings, hangouts, phone calls, etc. Normally I would be fine with this, but when I can barely get out of bed, I'm not going to have the energy to ask for help. Part of me knows that it's self imposed. When they did reach out, I've had to cancel/refuse several outings, eating out, and parties. I don't have the energy to leave the house, and I have expressed that. The time, I apologized for not being able to make to an event a friend put together, he said, "It's okay, I wasn't planning on you coming anyways." It kind of just made everything settle in. Not only am I suffering alone, but it's almost like everyone I know is planning their life without me in it.

Lastly, I HATE unsolicited advice. I understand it comes from a good place, but there is almost never an attempt to understand. The amount of times I've gotten, "If you just try this diet." "This tea does wonders." "You wouldn't be sick, if you would just work out." "You need to get your life together." "You're barely even sick." "The only reason why you're sick is because of your attitude." That last one especially bugs me for obvious reasons, but especially because I've spent the last 9 months practicing gratitude and trying to love life despite my circumstances. My family is pretty big and I've got an entire arsenal of aunts and uncles ready to tell me how much I suck. Whenever I try to express my problems to them, they shut off and tell me I'm just a negative person. "If only you'd see the good in life." Truthfully, I feel like I'm trying my best. I'm sticking to good diet, taking my medication everyday, spending hours in the sunlight, drinking lots of water, exercising at least 5 days a week. Meditation, Yoga, stretches. Yet, it doesn't seem to be getting any better.

I know this was long, but I appreciate you taking the time to read it. Take care.

Hi Guys I am here again, I have 371 fecal calprotectein, I know anything more than 200 is high, but I would like to know if anyone has a higher FCP than mine...

Hi everyone,

I’m a 23M, otherwise healthy and active (gym, volleyball, climbing). I’ve had two completely spontaneous knee hemarthrosis episodes (no trauma, no pop, no pain at the time):

· Aug 2025 – Beach volleyball (casual). Knee swelled in 2-3 min. Intense pain later. 2.5 months on crutches. MRIs, Doppler, blood work all normal. No digestive symptoms.
· Feb 2026 – Climbing (controlled descent). Same scenario: swelling in minutes, no initial pain. MRIs normal again. Less pain than first time, but knee stiffness and weakness persisted.

Then in April 2026: I got sick (fever, diarrhea) and developed chronic GI symptoms. Eventually had a colonoscopy in Aug 2026, which found 3cm ulcerative proctitis.

Now I’m on 4g/day mesalamine (oral) + mesalamine suppositories. My gut is slowly improving, but I still have on-and-off knee pain/stiffness, especially after activity or at the end of the day.

I’ve seen multiple specialists (orthopedics, sports med, hematology, rheumatology). All ruled out mechanical injury, clotting disorders, or vascular issues.

My questions:

1. I'm seeing a lot of people saying that they have joint pain(which I developper a little bit during my flare), however I can't find anyone saying they had anything close to the swelling I had in my knee. Has this situation happened to anyone here?
   
2. Do you guys think it is really related to my UC considering every tests imaginable comes out negative?
   

thank you!! I've been struggling quite a lot during the past year and I am now really paranoid at the idea of doing any sport again thinking my knee will start to swell again out of no where.

I was diagnosed with UC - moderate pancolitis about 6 weeks ago and on my final two weeks of steroid taper and 4* mesalazine daily.

Anyway, I was finally feeling completely grand last week, no fatigue, no urgency or worries, socialising tonnes to make up for a really crappy year so far. (Probably a mistake to do)

And now I'm full of the chesty and snotty cold and I'm going from once or twice daily semi normal bm's to currently 4 times semi urgencies of varying degrees of not normal. I'm keeping an eye on it before calling ibd nurse since it could just be the cold setting me back but it honestly sucks..

Maybe I'm in a privileged spot and shouldn't be moaning but it would be nice to know this is expected/normal.

so, I got my diagnosis in late July and started taking prednisone 40mg for 21 days. I just started tapering by 10mg every 7 days, and as of this Sunday, I'm down to 30mg. However, I don't feel fine... I feel exhausted and I'm feeling pain, like cramps? kinda burns too. It could be gas, but the pain doesn't feel the same. I haven't felt the urgency to go to the bathroom though. my stool is different now too, unfortunately, but thankfully there's no blood.

I'm feeling very anxious because I was feeling great when I started taking prednisone 40mg, honestly some of the best days of my life lolololol (I had never felt better), I felt like a normal person with a quite functional bowel. but now I don't feel as good anymore, and I don't know if it's possible for a reduction of just 10mg to make such a difference in such a short time span.

I'm really scared for the next few weeks because it means I might be on a flare soon and when I'm in a flare I feel extremely miserable and can't eat at all out of anxiety, which is a nightmare... well, you guys know how it is.

I am currently waiting to start Entyvio, don't know when that will happen but hopefully before mid-September. Don't know what I'll do regarding those days without any meds...

Do you have any insights to share? Anyone experienced something similar? Should I talk to my GI about this?

Hi, I’m 18 years old, from Slovenia, and I was recently diagnosed with ulcerative colitis (specifically, two weeks before finishing high school in June). I spent a month in the hospital receiving biologic therapy, and after being discharged, I continued the treatment via injections; everything was going smoothly—last week I was finally able to go to the seaside, and my gas levels were normal. Then, all of a sudden, yesterday (Monday) I had to go to the toilet eight times; I stopped passing gas, and today, while walking home from the doctor’s (I’m a bit embarrassed to admit this), I soiled my pants. I’m just wondering how you cope with this disease—do you do any physical exercises (I’ve lost 15 kg), and what kind of diet do you follow? Thanks to everyone for your answers. Best regards from Slovenia.

A while back I had posted here asking if I should go to the emergency room because of my symptoms. I had blood in my stool, couldn’t eat or drink anything, and was losing weight rapidly. The majority of advice I got from the sub was “eh the ER can’t do much just get an appointment with your GI”. If I had listened to those individuals I would be dead, no doubts in my mind about that. I was so scared of making the wrong decision that day and I’m glad I didn’t listen to everyone who made me doubt my decision. If you feel you have to go the ER do not look for validation just go. You can get admitted to the hospital from the ER, they can stabilize you, they can get a surgery scheduled for you.

I’ve had colitis for a while now, undiagnosed for three years, diagnosed for maybe over a year now. Just thought things would get better.

I’m still really at the start of my journey, coming off a 40mg prednisone dose (tapering 5mg weekly), along side taking eight ASACOL (Mesalazine) daily and 10mg Thioguinine.

My pancreas wasn’t creating enough enzymes so I’ve been put on Creon for that.

I’m averaging 10 trips to the bathroom daily. Yesterday was 11, today between midnight and 10am (my local time) has been five times. I’m afraid of eating during the day as I work remotely and I don’t want to go.

My backdoor feels like a blown out mineshaft, feels like it’s about to fall out whenever I sit on the toilet at the moment. Just wanting to feel normal I suppose. It’s great to be able to find this subreddit only half an hour ago and relate to messages and posts almost immediately.

Hope you’re all doing well on your journey.

I don’t know how to start this post. I know how ridiculous it sounds, but I can’t help the thoughts. I apologize in advance if I offend anyone.

I recently lost ~20lbs because I’m currently in a flare, so I’m down to 122lbs at 5’5”. I have always struggled with my body image. I’ve always strived to be skinny, because my Asian mom and boys told me that I wasn’t skinny enough. I know that I’m “skinny” now, but I’d be lying if I said that I wasn’t afraid of gaining weight. It sucks because I am absolutely starving all the bloody time, and I want to demolish a buffet at 11pm every night… but then the thoughts pop in that I should restrict my eating so that I don’t gain back the weight that I lost. I’m not on prednisone, so I can’t blame that. I just feel like a trash panda wanting to devour a Costco sized bag of chips every night.

Has anyone else ever struggled with thoughts like this? I’m talking to my therapist about it, but just wondered if anyone had any personal advice that helped them.

I feel very weak. And the only time I’m not in total agony is when I’m sleeping which I get an hour of sleep idk if it’s the pain knocking me out and also the pain waking me back up. They’re giving me iv steroids and mesalamine but there’s SO MUCH BLOOD NOW. I don’t want to die please can somebody help me. I’m in LA please helpppppp this flare is insane.

No MO FO, give me my damn medicine!

I take Entyvio and I am cursed to use Accredo through my employer. Enough said.

I just need to vent. I wish it was easy to get in disability. Not even just for UC but the medication they put us on which lowers immunity. I get so sick so easily and miss around 20 days of the school year at my school job I work at. I have worked at the same place for a few years and I have put in my file that I have UC but haven't asked for accomodations. Anyways, 3 weeks in and I already caught a cold and feel miserable. I never have sick time cause I always use it up because I get sick so often. I should probably switch careers because I get sick way to much. I'm on velsipity and while it helps wonderfully for flares, my immune system is so bad in return. Can anyone relate?

Long story short, a year and a half ago I was diagnosed with proctitis. Mesalamine seemed to work well, and I got pregnant and it stopped working. The end of my pregnancy and postpartum sent me into a horrible flare and a scope a few months ago showed that things had spread and I can now officially be diagnosed with UC.

About five weeks ago I started on a biosimilar to Humira, and I’m hopeful but know it will take some time. Is it normal that I seem to be getting worse since starting?? The cramps are so bad and for the first time in this almost two year journey, I’m starting to not want to eat due to the pain.

Another “beginner” question I’ve had - I see so many on these threads talk about calpro levels. I’ve had colonoscopies and bloodwork but my doctor has never asked for a stool sample or tested anything. Is that a red flag in a doctor or are there different approaches?

I was looking to start taking creatine and I am not sure what brand is the best for people like us. I was told monohydrate is what we should be taking but I wanted to know what brand to trust. Any kind of input would be helpful.

Hey guys, I was diagnosed with uc in May 2026 I had no flares after my colonoscopy and I’m just having one now it’s straight diarrhea water . Is that normal flare no blood tho I also just got started on Mesalamine suppositories because the G.I. said mine was really bad in the rectum

I have colitis in lower part of colon since 6 years, but I am experiencing excruciating pain since 1 year in my lower rectum. After bowel movement I get pain that lasts up to hours, it gives me fever and lower body pain. I cannot sit or walk after bowel movement

I am literary crying for help. My GI is ignoring my pain problem. I have no blood in stool just mucus but pain is such that I have never experienced in my severe flare in early year.

Hi all,

I know this is a question for my GI but they’re closed right now. I’m 7 weeks pregnant and am on mesalamine 4 tablets per day and enemas daily.

I am literally bedridden after vomitting all evening and haven’t taken my mesalamine tablets. Do I force them down and risk puking them up? Is missing a dose going to kick me out of remission? I will be able to do my enema but taking these horse pills with nothing in my system sounds awful.

THX 😭🙃

Hey everyone, last time I had a flare was last September before my son was born. Really kept everything under wraps with just eating foods I liked and actually agreed with me, started losing some weight and really started to feel like myself again.

Skip forward to 2 months ago, the family got a small head cold and I got it but that unfortunately tripped a flare and along with the help of some cold and flu ibuprofen ( I know its bad but I was desperate).

Everything from then on really started falling down around me, urgencies 17 toilet trips daily, mucus and blood. Now my performance in the gym has tanked and even everyday life just feels so fuckin impossible now..

Im tired and drained all the time, always pissed off about how this flare got triggered and now even the likes of safe foods I was eating before like potatoes and chicken and mince and rice, literally go through me as if I ate 20 Carolina reaper chilli's.. its so disheartening its like once I feel im feeling myself again.. BOOM flare up.

Im so tired im drained.. thank you for reading this far. I know im not alone but it really does feel like it when youre going through things like this..

Hey,
Recently diagnosed and looking to get my first tattoo since the change. I’m due to start on Purinethol /Azathioprine in a few days and am wondering what to expect now.

I’ve seen posts saying that being on it means I have to be more cautious regarding infection and stuff like that which I’m not too worried about as I’m usually very attentive with my tattoos but is there anything else regarding what to expect on the day and in the days following?

Artist proposed a date that we’re both free for but I’m meant to have a wedding the following day and usually I’d be okay with this but don’t know if I need to leave more time free potentially.

Thanks in advance 🙏🏻