I’ve had UC for 13 years and have never, not once, gone into remission. I used to use it as a joke, telling medical professionals I haven’t had a solid poop since 2013. And while my calprotectin was normal, I’d still have symptoms.
I went onto vedolizumab, didn’t work.
Tried infliximab. Gave me hepatic liver injury and nearly died.
And now, after an actual human looked at one of my biopsies, they found it. Collagenous Colitis.
So yeah, I have both now. And duodenitis but that’s acute, thank god.

My doctor told me yesterday and I burst into tears. I’ve never done that before, even at my lowest. It’s chronic and can go into remission but given my UC history, I doubt I’ll ever have that.

Honestly guys, I’m at a loss. I’ve been on pred since April and have almost weaned off. I don’t recognise my own body. I spend more time in the bathroom at work than I have for my lunch break. My liver is still fried and I can’t have Panadol or nurofen when I’m in pain. I can’t drink to celebrate my families milestones. My psychologist says I have major depressive disorder, which checks out.

I’m just so tired of this. I guess I’m just asking what’s everyone’s coping strategy when your world feels like it’s ending?

This is the word I’ve been waiting to hear and I heard it today! My Ulcerative Colitis is in remission.

It’s been a struggle to get here… today was my 4th colonoscopy since turning 50. Anyone who has had one before knows how much fun they are.

Last year was a challenge for me, physically and mentally. My medication stopped working. It was a matter of many months of faking being well, fighting through brain fog, pulling together what little energy I had to spark a fire within me. Food going through me undigested, losing hope but carrying on.

I’m grateful to be here and grateful for having a great support system… and to run a support group. I’m especially grateful for my gastroenterologist for giving me this news today.

30yo European man, 190cm, 75kg. I was hospitalized for severe colon inflammation (partial colonoscopy revealed MAYO3 with some MAYO2 areas). 10+ bloody stools a day (maybe could have been more if I were eating more), Bristol 6/7, waking up also at night to go, urgency. Got the partial colonoscopy on day 2 which made clear it was looking a lot like UC. Started steroids via IV immediately after that. Got my first dose of infliximab and got discharged on day 6 (only a couple toilet trips with very little blood). Also started prednisolone from day 7 at 40mg and tapering down 5mg a week.
Biopsy analysis says diffuse inflammation with ulcers, cryptitis, and crypt abscesses. Severe crypt distortion.

I’m now low key thinking I’ve been having UC at mild levels for most of my adult life, as I’m now consistently having what I think to be very good poop (Bristol 3) while in the past (pre-diagnosis) I’ve mostly been at 5, rarely 4? (at least since I started being more conscious
regarding checking my poop)

I started having solid healthy-looking poop already from day 7/8 and been there since. I’m now at day 13. I find myself genuinely thinking “is this how my poop was supposed to be looking?”

Is this normal and supposed to continue like this or am I under a good poop spell due to the steroids?
I’m basically fresh new to this diagnosis and don’t know what I should expect in this phase.

I’ll have my next infliximab dose next week, then 6 weeks after that, then every 8 weeks.
The doctor from my hospital’s IBD outpatient clinic suggested adding Imurel alongside the infliximab, starting from the next dose.

While I’m at this stage (and hoping not to relapse to a severe flare up again), I wanna follow whatever treatment they recommend. But I was wondering, once my gut has healed completely and has been healthy for a while (hopefully), if I could get off the Infliximab(+Imurel?) and try mesalazine alone? Has anyone tried that? I don’t like too much the idea of being constantly on immunosuppressants. Am I being silly?

Hi,

When you were first diagnosed until your targeted medication started working, how long were you on prednisone and at what dose?

(I’m very aware of long term pred consequences)

Just trying to feel better about being on pred until Skyrizi hopefully gets approved. I can’t get under 40mg without ending up back in the ER.

how did your doctors typically handle a c diff infection and flare at the same time? i’m currently on dificid and am showing signs of possible flare, so my doctor wants me to get on budesonide, but thought that might be counterproductive? is it typical to be on an antibiotic and steroid at the same time?

I’m on prednisone, started a month ago to deal with a flare after Velsipity stopped working, and my doctor wants me to stay on it until all my loading doses of Entyvio are done, which means not starting to taper off it until mid-December at the earliest. But the past couple of weeks I’ve started having randomly racing heart rate when I’m not doing anything at all. Literally twice today I’ve felt my heart start racing and checked my Apple Watch and my heart rate jumped 20-30 bmp out of nowhere while I’m just sitting at my desk, no stress or any physical trigger. I can only assume this is caused by the prednisone. Do I need to be worried? Do I need to bother my doctor about it? I don’t know if not taking prednisone is even an option since it’s the only thing keeping the flare at bay until the Entyvio can build up enough in my system to work on its own, as far as I know.

I couldn’t figure out why I was cramping so much. I tried eating way more potassium and drinking electrolyte drinks and protein shakes and such. That helped some, but it still kept happening whenever I was taking prednisone.

Then I started slowing down my water intake. I don’t drink less. I just don’t drink as much in a short period of time. Apparently, more than 0.8-1 liter in an hour can deplete electrolytes for many adults, adding to cramps. This is the only thing that has helped me, along with adding supplements with breakfast. I just wanted to share in case anyone else was having debilitating cramps on prednisone what worked for me because it was so bad. I take calcium, magnesium, and vitamin D with breakfast, along with a multivitamin (one a day men’s).

I have been pretty close to a remission for a little while now. I have been going strong on entyvio and doing the self injections every other week. So far my symptoms have been maintained really well.

But as I was getting ready to do my injection tonight I just really didnt want to have to do it. Like I just feel so tired of the maintenance of this disease.

Don't get me wrong I've been an inch away from emergency surgery and to think I am where I am now with this disease is amazing but does anyone ever think like damn this has been alot?

Im just tired of feeling tired 🙃🙃🙃

Hi y’all,

I am on a maintenance dose of mesalamine and I haven’t had any blood in my stool in about a year and a half. Two days ago I had a little bit of blood with one BM for the first time since my last flare and of course, I freaked out a bit.

The next day there was still a little bit, and still some discomfort and cramping but it seems to have mostly settled today.

I called my GI immediately after the first sight of the blood because I couldn’t fathom the idea of a flare happening right now, but I fear I may have over-reacted. He did hsay to increase my meds for a month (which ofc I’m fine with), because I told him that I suspected my UC was starting to flare up, but just looking to hear other people’s experiences.

I’m just curious how many of you experience anything similar, where it’s just a few random days of a bit of blood and it stops? Are mini flares a thing? Or like teetering on the edge of one? Does blood and cramping automatically mean a flare?

Mesalamine has been working very well for me overall, and ofcourse I am not completely symptom free of this disease, but the blood had stopped pretty quickly after I started taking it when diagnosed and hadn’t returned since.

I should mention that in the days leading up to the blood I ate like absolute shit and did drink a little (I haven’t been drinking much since diagnosis).

Anyways, just looking to hear what others have experienced! Please be kind.🫶 This is still semi-new for me as I was only diagnosed in 2025!

My body is hurting so bad and my throat is very sore I can't . I couldn't fall asleep today and it’s currently 3:50 Am I kept moving across my bed because of how much my body aching (mainly legs), no temperature, just bad fatigue sore throat and head cold.

I’m on infliximab injections which I’m meant to take today but not sure what to do, I have a call scheduled today with my doctor but was wondering if anyone else is feeling the same

London , UK

Any tips or advice to get rid of this flu would be great thank you

Hi everyone. I did my first Skyrizi on body injector on Saturday and today (Tuesday) I feel like I have the flu. So down bad with exhaustion, body aches, sore throat, difficulty concentrating, headache. This did not happen with my infusions. Is this normal with Skyrizi? I’m new to it, obviously. I also did Humira for 5 years and never had this happen. For reference I did go to urgent care and strep, covid, and all flu and RSV were negative and I don’t have a fever, although it feels like I do. Any insight is helpful, thank you!

I've got my biennial colonscopy coming up this Thursday, so that means tomorrow is my clear liquid diet day. I've got 3 orange Boost Breeze drinks in the fridge, but am wondering what else I should pick up from the grocery store tonight. I'm thinking apple juice, some sort of lemon lime soda (to wash down my Suprep with tomorrow night), a savory broth of some kind, but that's about where I'm at. I'm not super interested in Jell-O, but maybe I'll get some Italian ice of some kind.

I never like these days because it's hard to get nearly enough calories in (even though those Boost Breeze drinks are like 250 calories) and everything is just sugar overload. Bone broths are alright and have some protein but they're like 40-50 calories each. Let me know of any hacks or tips you have for navigating this unpleasant day's diet. Thanks!

Hi all,

Forgive me for posting so much in here over the last few days. TLDR; I am flaring during my second trimester of pregnancy and failing mesalamine.

Anyone have experience with Entivyo? We’re thinking that as a next step with budesonide to calm the flare. Particularly curious about it during pregnancy but could also use any personal anecdotes as I’m just scared.

29 years and this feels like a lot to wrap my head around.

Hey Leute, ich Selber bin nicht von dieser Krankheit betroffen aber ich sehe jeden Tag was es mit einem Menschen machen kann, meine Partnerin hat seit über 4 Jahren eine schwere UC und befindet sich auch aktuell wieder in einem heftigen, langanhaltenden Schub mit Schmerzen und weiteren Problemen.
Ich möchte sie dabei so gut wie möglich unterstützen und der vest mögliche Partner sein der sie in so einer Zeit unterstützt, ich wollte fragen ob ihr irgendwelche Tipps oder Tricks habt die mir vllt dabei helfen können besser zu verstehen wie es ihr geht und mir helfen ihr zu helfen?

Vielen Dank schonmal🙏🙏🙏

My doctor seems eager to get me started on infliximab and azathioprine. However, I have been on Salofalk (mesalazine) since my diagnosis in October 2020 and only experienced one major flare in this time. I consider myself one of the more fortunate sufferers of this awful disease. This seems like a significant jump in medication and, given the risks associated with immunosuppressants and biologics, I'm wondering if there is some middle ground for me to explore before jumping to this. Does anyone have any advice for me?

I have had watery stool for 8 days now. Like 100% watery. I took one dose of pegorion (macrogol) for mild constipation as I used it without issues after pregnancy. Well, now I have suffered from watery diarrhea for 8 days. Only imodium/lopex will stop the symptoms for 24-36h and then it starts again. I have no other symptoms.

I have entyvio in use and ulcerative proctitis as diagnose. 2 years in remission. Watery diarrhea is far away from the symptoms I have had before. Before it was mainlu blood, mucus and uncomftable feeling.

Have you had only watery diarrhea as UC acute symptom?

Hi I’m currently rinvoq and transitioning to tremfya.

Anyone else getting covid and flu vaccines? I just had mine last week but was wondering if they are still recommended by your doctors!

I am in the UK for perspective :)

not sure what i’m looking for here aside from a place to vent, possibly support or hopeful words/experiences. this has been a very rough year and i’m just feeling very hopeless with this disease at the moment.

for insight, i’ve had UC since 2022, but it was mild and i was managing well with mesalamine. fast forward to this year, i had my first major flare from jan-apr before i got any real help due to insurance issues. finally got on steroids in april and then a biologic in june. i felt great from june to sept, aside from weaning off the steroid and the joint issues that arose with that, but no major digestive issues.

i thought i was over the worst hurdle of the year and onto a better track, until this past month when i was having all the flare symptoms again but this time at an exponential rate, went to the doctor and was told i have c diff. i’m now on an antibiotic for that and am having the worst time. i have so much anxiety regarding this infection and all the stories i see of how hard it is to get rid of and the possibilities of it coming back again, especially for those of us with IBD. i’m not even 100% sure if the antibiotic is working fully and also feel like another flare is happening at the same time.

i’m just feeling very hopeless and physically and mentally drained. idk how to continue moving forward and pushing to get healthy when it feels like obstacle after obstacle keeps coming my way. the loneliness and isolation on top of it all makes everything feel so much worse. it’s all just been so difficult and i’m struggling.

So my job, decided to switch from a flat rate co-pay based insurance to a high deductible based one. I only found this out because I went to my primary care for antibiotics when I got sick and instead of paying $20 like I usually did with the last insurance, I now owe $270 because.. I did not meet my deductible. That deductible did not matter for my last insurance. But for this new one it does. Not only that but they reject my pills every time and I have to fight acaria health on the phone and get a prior authorization cause I can't pay $3k for my meds.. and pray to God I don't run out of pills. I also just had my follow up with my GI and now I'm terrified to see the bill when it comes. I can't afford these bills, I only make $22k a year at my job and still have to pay rent, utilities.. Have any of you been thru insurance changes thru your employer and not been able to pay the deductible? What do you do? Payment plan with your Gastro forever? Let me know please. I need advice.

I was wondering if there were any alternatives to coffee. On a good day maybe I can grab an iced mocha or something but it isn’t something I can really consider day after day. What works for you?

I was in a Flare few weeks ago and my numbers for some factors such as CRP - 199 and Calprotectin was 2650. I started infusion of Tremfya of 200mg twice and am scheduled for my third in about 2.5 weeks. My current reading of CRP is 3 and Calprotectin is about 450. Still not ideal but its improving. I have tapered of steroids to 0 and I'm glad about that.

My weakness has helped a bit but my vision is improving slowly. In my opinion Tremfya is working on me but I'll let the doctor comment.

For further context, I've never ever seen my Calprotectin below 1000 on Mesalazine. I had just given up and started to live a normal life. I feel the CRP is down due to steroids and Tremfya but I guess its too early to tell.

For anyone planning or debating on starting Tremfya, it works well. I personally didn't have any side effects on Tremfya or I was anyways so weak to notice.

I used cortifoam for 4 days. The good news is my symptoms are going away! The bad news is the morning I woke up with my whole anal area red and raw. I showered and put on Vaseline but I’m not sure if that was the right thing to do. It’s a bit itchy with the Vaseline. Is irritation normal? Or did I have an allergic reaction and should take Benadryl?

Hey folks. I've had 2 colonoscopies now, and both confirmed chronic inflammation, likely UC. After the latest procedure I was just sent home and told to resume my previous diet. That was a few weeks ago, and my appointment to talk with the GI about it isn't for another couple weeks. They didn't even really give me an official diagnosis, and I'm not really sure what I should do or eat in the meantime. Were any of you prescribed meds quickly after your first colonoscopy, or did you have to wait it out for the next regular appointment?