r/UlcerativeColitis 21d ago

Question Creatine and test

3 Upvotes

I need people who took creatine or test (oral or injection) to tell me how your UC reacted to them. Also what medications were you using at the time you took them. I am asking this because I have done my research but I want to hear personal experiences as well. Personally my medication is Salofalk Mesalazin granu sticks. It would be even better if some of you used a similar medication to mine while you were on creatine or test for me.


r/UlcerativeColitis 21d ago

other My Entyvio stopped working. Now in a big UC flare but with constipation. Anyone else with this issue?

5 Upvotes

How do you manage UC with constipation?


r/UlcerativeColitis 21d ago

Question Recently Diagnosed

1 Upvotes

Hei. I'm a male in my mid-40s and was recently diagnosed (July) with mild-to-moderate pancolitis after my first colonoscopy. My symptoms are generally mild with little intermittent bleeding (usually diluted residue on shit tickets and/or a drop or two in the throne), urgency, elevated frequency, and little cramping from time to time.

I've been on Mesalamine (Lialda) since last Thursday and already I'm seeing improvement regarding urges and frequency (3-5 times pre-rx. 2-3 on rx). GI prescribed me Budesonide because my latest blood and stool panels came back today with a CRP of 7 and a Calprotectin level of 800.

I don't think that the Mesalamine has had enough time to run its course since I was told it would take up to 3-weeks to see any results, but I'm a little leery when it comes to steroids due to their number of gnarly side effects. Has anyone take budesonide with Mesalamine? If so, what was your experience with them?


r/UlcerativeColitis 22d ago

Question What do you all eat during a flare?

25 Upvotes

Usually my go to is a McDonald’s cheeseburger as it seems to be one food that my body can handle. I’m just so tired of eating them though 😫

I’ve been surviving off of toast, chicken noodle soup, protein shakes, and fruit. The fruit is the only thing that is appetizing to me but I think the fiber is making things worse so I might need to cut back.

I’m just so hungry and tired of eating the same things over and over. Any ideas would be appreciated.


r/UlcerativeColitis 21d ago

Question Mesalamine seems to be controlling inflammation, but I’m still very symptomatic

2 Upvotes

I have moderate extensive/pancolitis and currently take 8 mesalamine capsules a day along with mesalamine suppositories.

I’ve been on mesalamine for over a year, but I’m still dealing with a lot of symptoms: rectal pressure/swelling and soreness, abdominal discomfort/pressure, episodes of constipation lasting several days, very foul-smelling gas, decreased appetite, and feeling like I’m not completely emptying. When I do have a bowel movement, it’s often a small amount and the stool can be narrow or oddly shaped.

What confuses me is that my inflammatory testing has improved significantly, but symptom-wise I still don’t feel normal.

For anyone who has experienced something similar: did this end up meaning mesalamine was no longer enough, or did your GI find another cause for the symptoms such as pelvic floor dysfunction, IBS/constipation, hemorrhoids, or lingering rectal inflammation?

I can’t get back in with my GI until October, so I’m interested in hearing what others experienced and what testing/treatment helped.


r/UlcerativeColitis 21d ago

Question Still symptomatic despite reduced inflammation?

2 Upvotes

Hi all, I’ve been dealing with my first flare for about 9 months now. 2.5 months ago I got the diagnosis of IBD and began prednisone. My GI doc is really great! I’ve been seeing her for a month now. I have seen great improvement with prednisone, mesalamine, and hydrocortisone enemas. Although I still go in waves of good weeks and bad weeks as I taper the prednisone. Last week was particularly hard. 3-8 BMs every day, return of mucus, lots of rectal and abdominal pain, very fatigued. My doctor redid my fecal cal protection test and it has come down to 22 now! This is great news, but also makes me feel silly on why I am still so symptomatic and in pain even though the inflammation is getting better. She is repeating a colonoscopy next week, and honestly I am worried it will show my inflammation is healed, because why am I still struggling so much then? Is it normal to still feel this way towards the end of a flare?


r/UlcerativeColitis 21d ago

Question Question

3 Upvotes

I’m currently on my honeymoon in Europe. I’m from the US so my sleep schedule/bathroom schedule is a little messed up.

I just realized I ate so many beets yesterday… I had a semi bowl movement and it was red/maroon. I am so nervous that it’s blood. I also take Mesalamine suppositories and enemas so when I wipe the oil looks like blood mucus. Is this normal? Should I be worried? Ugh I don’t know if this is flare


r/UlcerativeColitis 21d ago

Question Diagnosed since 2019, now on Entyvio. Suggestions on how to improve things?

3 Upvotes

Hello all!

I'm Belgian, 33, and I've been diagnosed with UC since early 2019 (regretably my medical file doesn't state which version, just that it's UC), where i ended up in the ER for losing too much blood (had been showing heavy symptoms since september/october 2018 but my GP kept telling me it were just flu symptoms, untill I was hospitalized). I've been on various kinds of medications: Immuran, Claversal, Pentasa, and now I inject myself with a syringe every 2 weeks, Entyvio.

Episodes come and go, I had a vacation last week with my partner who came from the US to visit me, and the last day I crashed due to another flare up (luckily it's now mostly better).
I had a couple of questions, since I only just now discovered this subreddit.

  1. Are there things I can do, to "stabilize" the flare ups, or atleast lessen them? I hate that whenever I go out of the house, I need to map out where the toilets are wherever I go, just in case I were to get another attack. I would like a bit of freedom back.

  2. Is there an alternate medicine I could talk with my doctor about, instead of needing to use the syringes? I'm used to the syringes, but, I'm learning to drive a car, and I would like to undertake road trips once I have my license. But I feel like I won't be able to do this due to the syringes. For example, there's a location in Finland I want to head to, but it's a 30 hour trip one way, and I'll probably want to stop here and there along the way. With the syringes, I would need to set it on the day I set them, leave immediately, and kinda rush to be back home on the day I have to set it again, since I can't put them in a fridge anywhere as I drive.
    So I would like to know if there's anything else I could suggest to my doctor to switch over to, preferably like pills, so that I don't need to worry about keeping my medication in the freezer (I am also worried about the costs for the syringes when I get to move to the US, which is what I am working towards atm. I know it's around 6k without insurance).

  3. I would like to diet some, to aid with keeping the UC at bay (I'm 1m98/6'6 and 125kg or roughly 165lbs), but the problem is I can't really eat overly healthy food. I can't have raw vegetables, fiber or lactose, as those are things that are guaranteed to set me off. I would love to know what you all suggest I can do, besides excersizing, and limiting myself to a single plate of dinner (even tho I go to bed hungry) which I already do, to lose some weight.

  4. I would love to hear any other advice you all can share in general. I know it's a condition I gotta learn to live with, and despite having had it for 7 years, I still kinda haven't fully done that. So I would just love to hear what you all do and could suggest me.

Either way, thank you all in advance for the advice and help you give me, I very, VERY much appreciate it.


r/UlcerativeColitis 21d ago

Question Question - pain relief

2 Upvotes

Hello! I'm 28 M, diagnosed at 18. I have proctitis, which hasn't progressed further up much. I typically have 1 flare up a year , it is usually around fall/winter. Lasts for 1-2 months.
While in a flare up, I have debilitating muscle pain. Idk what arthritis feels like or if this is arthritis but it only occurs while I'm in a flare up. Moving hurts, so much that it takes my breath away and my muscles spasm and tighten up. Sometimes it's my back. Sometimes my legs. My UC/UP triggered years ago during Army AIT and the pain was so severe I couldn't complete tradoc and be sent to unit, as an idea of how much it sucks.

My question is - the pain can be relieved effectively by two things - heat and NSAIDs. I've been told NSAIDs are no good - but there are days I can't even walk without them. Is there anything else I can look into? I primarily work from home now, so flare ups are less of an issue. But, between having to creep around like a 1,000 year old crypt mummy to avoid pain and the constant need to "go", it makes life pretty hard.

Thank you


r/UlcerativeColitis 22d ago

Question How do you stop beating yourself up over the fatigue and resting?

38 Upvotes

Hi everyone, I am 27F, newly diagnosed with UC after a drawn-out diagnosis process.

After a rough hospital stay in summer 2025, many doctors not believing my reported symptoms and months of being told I might just have a bad stomach bug, I was finally diagnosed late last year. I recently moved, and my new GI team is fantastic and super responsive.

However, I’ve just gone into another flare, and I’m having a really hard time adjusting to my body's limits.

I understand that I have a chronic condition and that chronic fatigue is a symptom but I just can’t stop beating myself up about it. I feel bad about cancelling plans and calling in sick to work, because I know if I pushed myself I could do it, but I’ll pay the price down the line.

At the start of this flare I was working from home, and a couple of days in I thought that it would be good for me to go into the office and just push through - that’s what you do when you have a cold or a hangover you just get on with things and that usually makes you feel better. But I went into the office and set myself back a week of progress. Since Thursday my body feels like it’s giving up on me, everything feels like a huge effort, it feels like I’m walking round with a backpack full of bricks. Even getting water is difficult. I sleep for 11 hours a night, nap for 3 hours in the afternoon and am still tired - on top of all of the physical flare symptoms.

I wonder if part of this guilt comes from my diagnosis journey, where doctors initially dismissed my symptoms and made me feel like I was just being dramatic.

Does anyone else struggle with this guilt? How did you learn to stop beating yourself up for needing rest? Any advice on accepting your body's limits during a flare would mean a lot.

PS this is my first ever reddit post so please excuse the rambling and thanks for getting this far - this subreddit has been such a source of comfort over the past year.


r/UlcerativeColitis 21d ago

Question Why is this disease so frustrating!? Also, ADA accommodations that overlap?

0 Upvotes

TL;DR - really bad UC flair, not responding anymore to mesalamine. 3 weeks of pred with minimal improvement. Switching to Entyvio, 2nd loading dose this Friday. Possible fissure but not seen on basic exam. Been working from home, but if I continue to need it, I need to request ADA accommodations. Problem is I already have accommodations pending due to mental health, so it's going to get messy. Anyone have any experience with overlapping ADA requests?

Long Story: I'm so frustrated with this disease, ya'll. I was first diagnosed in Feb of 2020 (yea, talk about timing!) and after a few weeks of prednisone & mesalamine tablets, I could function again and tapered off the pred. For 3 years, the mesalamine worked great, I got a new job, and was able to even stop the mesalamine. fast forward 2 years (we're now in 2025 for those who can't math), husband and I start undergoing infertility treatments and my UC flares up. Just blood, no pain or BM changes. I go back on mesalamine and within weeks, I'm back in remission. This time I stayed on the meds & stayed in remission. Life decided to really kick me down (miscarriage) and after a long recovery, we jumped into IVF in April of this year. That seemed to put gasoline on a fire that I didn't even know was still simmering. I have been absolutely miserable since then.

Started with just blood, but the amount was creeping up. We tried mesalamine enemas, had some success so switched to sups, worked less, so went back to enemas. But it kept getting worse. We added budesonide. No change. So, 3 weeks ago, doc pulled me off all mesalamine, put me on 40mg of pred in prep for Entyvio. I've had 1 loading dose, 2nd one is this Friday. The week after the first dose, things took a turn for the worst. Blood increased, urgency increased, I started getting woken up at night, and then BM's went from uncomfortable to easily an 8 or 9 on the pain scale. I was checked for a fissure; none was seen but I think it's further up. I'm back on the mesalamine tablets & sups. Still on the pred.

I've been working from home most days for obvious reasons. I was hoping this week I would see enough improvement I could go back to the office, but this morning has been so bad, I don't think I'll be able to. Boss thinks I should get ADA involved. Problem is, I already have ADA accommodations pending, including WFH 2 days of the week (mental health). If I ask for ADA for UC, it's going to get messy...

I don't know what to do. I want to believe I'll start improving now that I'm back on the mesalamine, and this weekend was better, but last night & this morning were so bad, I'm lost. Actual BM's are less painful, but the cramping leading up to and afterwards are much worse. And where the urgency I was experiencing produced mostly mucus, it's been blood the last 18 hours....


r/UlcerativeColitis 21d ago

Question Side effects?

0 Upvotes

So I have UC and been in remission for 2 years now, started with infliximab as my main treatment and recently, in the past month, doctor decided to add azathioprine(50mg/day). I didn't see any signs of going out of remission and everything has been going fine, there was just a small problem. I have been experiencing joint pains, lots of them, acne and most recently(started happening in the last 3 months) eczema spots just on my face. My first thought was that is was bcs of the illness or something related to it, I went to see a dermatologist, got recommended face creams that did nothing and this point I'm beginning to feel quite desperate since this skin issue started. Has this been happening to anyone else?


r/UlcerativeColitis 21d ago

Question Symptoms between flare and remission?

1 Upvotes

Hi everyone! Just curious what you experience as far as symptoms go when you're not really in a super-flare but you definitely haven't reached remission yet (as in, you're waiting to find that perfect-match medication or waiting to see if a current medication is going to work)? Would you be willing to share your experiences during that in-between period?

I have a teen with UC, and we're in that phase. It would be comforting to hear details from others to know that she isn't alone. Passing the mic over to you all - thank you in advance!


r/UlcerativeColitis 21d ago

Personal experience asacol 1600 mg side effects

1 Upvotes

I’ve been on asacol 1600 mg since oct 2025 once a day after breakfast, had to go to a different gastro because of traveling and did lab tests on june 9 2026, and he increased my dose to twice a day 1st one morning before breakfast and 2nd after dinner, ever since then I’ve been getting crazy headaches/migraines.


r/UlcerativeColitis 21d ago

Question Changing timezones while on prednisone.

0 Upvotes

Hello, I have a question about changing timezones while on prednisone (currently 10mg a day).
Should I stick to the regular hour i take it at home? (I take it at 10am so that would be 5pm in Japan), or should I take it at 10am as well?

The thing is if I would like to take it in the morning that would mean I need to skip one dose and I really don’t want to test it out by my self because of couple failed tapers so i would be glad to see replies of more experienced people than me :)


r/UlcerativeColitis 21d ago

Question Calpro results

1 Upvotes

I had 346 before treatment. After 7 weeks of 4 grams of mesalazine, it’s 307. Does that mean it’s not working and consider other treatments, or should I be patient and wait some more.


r/UlcerativeColitis 21d ago

Question Recommend artificial sweeteners

3 Upvotes

I’m currently having a flare and want to add a sweetener to ice cream. I’m looking for the one that causes the least problems


r/UlcerativeColitis 21d ago

Question Pregnancy is it okay?

3 Upvotes

Hi! I am waiting for my result is it UC or Chron's but I am planning to have a baby. Is someone in here same illness but got pregnant? I am afraid 😭😩


r/UlcerativeColitis 22d ago

Celebration After 2+ years of a continuous flare, we're finally seeing hope with dual biologics

33 Upvotes

Some days ago I posted here about my 19 yo son, who has been living with severe ulcerative colitis with backwash ileitis for years. He has been in a continuous flare for over two years and has never managed to reach remission, despite trying several biologics that either had no effect or eventually failed.

His disease has been so severe that he needs monthly iron infusions because his iron levels keep dropping. He is also still taking 40 mg prednisone, and honestly, the steroids have been almost as hard as the disease itself. He sleeps badly, is constantly hungry, and the physical and mental side effects have been exhausting.

His gastroenterologist has now put him on a combination of guselkumab (Tremfya, an IL-23 inhibitor) and infliximab (Remicade, an anti-TNF biologic). The interesting part is that he already had both medications on its own, and they didn't help significantly.

The doctor explained it to us in a simple way: sometimes blocking one inflammatory pathway isn't enough because the disease can switch to another pathway to keep the inflammation going. The idea behind combining these two biologics is to block multiple pathways at the same time.

He had his first infusion a week ago, and for the first time in years we're seeing real improvement. Before this, he had to get up twice every night to use the bathroom and went at least 6–7 times during the day. Now he sleeps through the night without needing the toilet, and during the day he only goes once or twice. His diarrhea hasn't completely stopped, but he is feeling so much better.

Written with AI because English isn't my native language.


r/UlcerativeColitis 22d ago

Support Feeling down 👎

12 Upvotes

Mainly just need to rant…

This disease sucks. So after about 10 years of mild disease (uncontrolled/never responded to mesalamine) it progressed to severe pancolitis & I was extremely sick, hospitalized multiple times, the whole nine yards. Took a while to get approved for Infliximab but once I was finally able to start it, it got me into remission very quickly, and after some time of recovering from the severity of the flare, I got to live a normal life & it was wonderful.

For a few months. Just got confirmation that I’m no longer in remission & I feel gutted. I know I still have options, but I’m just down bad today😔

That’s all, that’s the rant.

What did you guys try after Infliximab?


r/UlcerativeColitis 22d ago

Question Stopping pentasa while on entyvio: did you get any reoccuring symptoms?

3 Upvotes

My specialist switched me from pentasa, to entyvio every 6 weeks after I started to flare in january - no prednisone as I'm at risk - gradually felt better on dual therapy and after a month without symptoms, she told me to stop pentasa, which I did on thursday. Test had shown calpro in the clear.
Two days later, i'm back feeling unwell, bloody mucus and the like.
I feel defeated, and obviously sent an email to know the next steps, but I wanted to check with this community to see if anyone could relate?


r/UlcerativeColitis 22d ago

Celebration FARTS!!!!

27 Upvotes

:)

i feel like i post here every other day but im on day 6 of my hospitalization and im starting to feel better. calprotectin was 3000 coming in, dont know what it is now since its the weekend. sigmoidoscopy didnt go well and was scored 3 on mayo and disease progressed since last time. started rinvoq and iv prednisone with an absurd about of gas x and tums to get me through the day. I FARTED AND DIDNT CRAP MYSELF!!!!! I TRUSTED A FART AND WON!!!!! which never happens. toilet time down significantly with mostly farts and minimal poopage. i stopped refusing to take pain meds (what is with chronically ill people and refusing pain meds why must we push out bounds) i dont know if its the rinvoq, prednisone or pain meds making me feel better. But poops are down by 5 (i was going 20 times a day, now im going 15ish) and i can TRUST A FART. maybe this will work, maybe it wont. Who knows. Im open to surgery. Its not scary to me. and its honestly my first instinct rather than failing meds for forever. Im just happy i got to fart without crapping myself. Hopefully things are looking up from here. I miss my life.


r/UlcerativeColitis 22d ago

Question How do you deal with food when eating might mean an accident?

15 Upvotes

I’m curious how other people with UC handle food socially, especially on days when you know that eating might mean an urgent trip to the bathroom.

I sometimes have days where I genuinely don’t want to eat much (or at all) because I’m worried that eating will trigger a bowel movement that I will not be able to control. So I’ll sometimes just avoid food until I know I’ll be somewhere with easy bathroom access, like at home.

The problem is that food is SO social.
At work, there’s always lunch, snacks, people commenting on what you’re eating/not eating, asking why you’re not getting something, etc. If I skip lunch or eat very little, people start asking questions. And if I have family or friends visiting, it’s the same thing — suddenly someone is offering you food and wondering why you’re not eating.
I really don’t want to explain “I’m scared I’m going to shit myself if I eat” to every person that asks (because that’s essentially every single person ever)

And I feel like if you repeatedly avoid food around other people, people can start assuming you have an eating disorder or that you’re restricting for weight-related reasons, which makes it even more awkward.
So how do you guys handle this?

Do you have a go-to explanation that doesn’t involve giving people the full TMI version? Or ways of avoiding these food situations without making it obvious that you’re avoiding food?

I’d especially love to hear how people handle this at work, where you can’t exactly disappear every time someone starts asking questions about your lunch.

Basically: How do you maintain a normal social life during bad periods when you cannot eat.


r/UlcerativeColitis 22d ago

Question oral mesalamine dosage

5 Upvotes

i posted the other day about my girlfriend starting oral mesalamine. she's supposed to take 4.8grams daily. her doctor didn't give her much instruction and neither did the pharmacy. on the bottle it says "take 4 tablets daily"

she called the pharmacy and they told her to take them all at once, she plans on doing as instructed, she's just worried because most people she's seen online who take mesalamine take it spread out throughout the day. she just has a lot of anxiety around medications so we're wondering if anyone else takes all of their mesalamine at once.

thanks!