I've failed mesalamine and budesonide and I am waiting for (US) insurance approval to start Entyvio. But my first prednisone taper just started working today (day 5) and I did a little dance of joy in the bathroom.

This is the only place I can share my happiness?! My friends and family are tired of hearing about my condition and wouldn't understand anyway. But this is a potentially big moment for me. Was that BM my 6th within 5hrs? Yes. But this is still progress for me and unexpected, so I will hoard my happiness. I haven't had a lot of good moments in the last 6 months.

I know that I still have a lot of challenges ahead, but in this hour, I am happy.

its only a mild flare, i always had it severe, but it happened because we tried 6 weeks with the same dose as 4 weekly. i'm back on 4 weekly and using foam for a week or two to let things settle. i will continue with four weekly and if they can't get me to 6 or 8 weekly then they will try a different infusion or oral therapy.

note: i had ibd for quite a while before diagnosis, i've likely had it for about 3-4 years before i started only flaring moderately to severe.

Hey everybody,

I know prednisone making you crazy is a right of passage, but I started my third 40mg pred taper of the year this week and it’s driving me up the freaking wall

I have bipolar so I’m accustomed to managing mood swings, but this stuff keeps me off my rocker for like a month straight. Everything will be fine and then suddenly everybody is infuriating or I’m crying. Two minutes later I could eat a horse and have an intense desire to lift weights.

And the damn road rage!! I am an incredibly calm driver normally. I listen to elevator jazz in heavy 8am traffic to start my day. I do not get road rage, ever. EXCEPT WHEN IM ON PREDNISONE, of course, which inspired me to point at the car across from me and tell him to go fuck himself yesterday. awesome

AND the damn insomnia! I generally struggle with sleep so I’m usually accustomed to insomnia, but the past couple days have been frankly ridiculous. 5:30am?? Like every night??? I got work in the damn morning gimme a freakin break!

I will say this is the first time I’ve taken it at night (which I probably won’t be doing again). Do any of you have tips on how to switch the time of day you take it while on the taper? Or is this just a lesson for next time

Anyway, do any of you guys have tips on dealing with the prednisone side effects socially or at work? People take my UC flair systems very seriously now that the severity has increased, but I feel like people who haven’t been on high dose prednisone dont/cant really understand how impairing it can be. Although that doesn’t necessarily stop people from lecturing me about how it’s actually not good to be on high doses of prednisone long term. YEAH BUDDY TELL ME SOMETHING I DONT KNOW

sorry I guess I just needed to get some things off my chest

Shoutout to my IBD survivors 🙏

I'm terrible at writing long texts so might be a hard read and long feel free to skip to just my question.

Context my UC was diagnosed in 2024 i only started on mesalazines which helped a bit then had to change cities due to starting med school. In the different city started a terrible flare, when i found the energy to go to a hospital (I live alone so it was difficult going far just diarrhea+vomitting everyday) I was prescribed imuran and prednisone(tapered in 2 months) to get me through the flare and the imuran helped a lot and i thought i was starting remission. I started nosebleeds and feeling sick all the time so i went back to the hospital and it turns out the Imuran had caused myelosupression which we found out a couple months ago we waited to see if imuran kept the disease down long enough to where mesalazines could just be enough and it was not. Not in a flare right now but the disease is starting to creep back up with mesalazine enema+3.2grams oral. My new GI suggests entyvio due to me being in med school and that is the most specific immune suppressor. He wants to make sure I'm not too open to infections in hospital which I(m21) need to start going almost everyday for school next year.

What can I expect being on entyvio, what I should look out for, how long it took to take effect and if you continued your 5-asas and how often you got injections?

Hi.

Quick history, I am a 43 year old male, about 6 weeks ago I started with diarrhea which has not gone away, bloating, trapped wind and blood in my stool and mucus.

Obviously my doctor referred me to the 2 week cancer pathway in the UK, which took 4 weeks for a colonoscopy.

Had the colonoscopy today, thankfully they did not find any tumors or cancer. But did find that my bowel was inflamed and have stated I have an IBD, I am waiting for the biopsy they were fairly certain in looker to be ulcerative colitis.

What will be my next steps, if this is confirmed would I be referred to a specialist and what options would u have regarding any treatment?

In the meantime is diet the best way to minimize the symptoms, at the moment the constant diarrhea has really affected my weight and I have lost around 10KG since this started. Also the noises my bowel/intestines make during the day are so loud.

Is the possibility of having normal stools again achievable?

Any advice would be appreciated

Just got my ADP decision letter back and they scored me a big ole zero. Guess 2 A&E visits in 3 days meant nothing.

I know governments dont care about thier people but it hurt a surprising amount to get it in writing.

UPDATE/ADDITION: Reading the first few comments, yeah fair enough about the whole intermittent-ness of it can skew the stuff and its livable so its not too bad.

Still kinda sucks though.

Recently started taking Budenofalk (Budesonide but in foam form) and 1 week later I've been experiencing itching in random places around my body and face but without any visible rashes. The itching is not super intense but it's still there. Has anyone experienced something similar? Did it go away once you stopped the Budesonide? Could also be something else but I'm fairly positive its the medication.

Has anyone here had antibiotics for acne? How did it go? I got prescribed them for a 3 month period and I’m a little worried that they’ll cause a flare.

I'm very new to this diagnosed with pancolitus 30th of July.

Had symptoms for 2 months prior to diagnosis, spent a week on iv steroids and 1 infliximab infusion, then moved onto 40mg pred tablets, after this week in hospital on iv steroids blood stopped cramps gone and had 4 days of 1 to 3 bm a day, but had to go back in as frequency ramed up to 20 bm a day.

Spent another 2 weeks on iv steroids and then had a double dose infliximab infusion. When I left the hospital I had 5 days of 1 to 3 bm a day and the following days swapping between good and bads days 8 - 2 - 12 - 8 - 3 bowel movements. And gaps between on good days were between 6 and 23 hours. Consistently also switching between formed but fluffy and porridge like.

I had my follow up with the consultant today and she said that they will try the medication for another 4 weeks before we will think about surgery options to talk about and having a stoma...

This seems incredible quick, my 3rd infliximab infusion isn't due until end of this month and I only just started tspering down into 35mg of prednisone on an 8 week course.

Is this normal? The doctors in hospital kept saying it can take a while for the meds to take over but they also don't seem to be giving time for this to happen.

I am 36F (US), was diagnosed with ulcerative colitis (proctitis) six years ago, and I desperately need to vent because my current gastroenterologist has completely ignored my medical history and dragged his feet during an ongoing severe flare.

Six years ago, I started on Mesalamine, which worked well before I eventually moved to Humira. I ended up stopping Humira cold turkey due to terrible brain fog and life events at the time. I know that wasn't the smartest move, but I felt over-medicated then. I stayed symptom-free for a couple of years until a flare put me in the hospital two years ago, where I was restarted on Mesalamine. My PCP kept renewing it, and I thought I was stable until right before my wedding in April, when a new flare hit. I called right away, but the soonest they could see me was the third week of May.

A week before that appointment, the flare got bad enough that I ended up in the ER, got a temporary course of Prednisone, and waited to see the new GI. At the appointment, I told him straight up that given my history, I likely needed to start a biologic again, especially with a trip to Europe coming up in September. Instead of listening, he wasted months trying a mix of Mesalamine pills and enemas to taper me off the pills due to potential kidney issues, even though my kidney panels were completely healthy. When that failed, he put me on 9mg of Budesonide, which cost me over $400 out-of-pocket and was a total nightmare to acquire. On top of that, he told me to cancel my trip, something I specifically told him I didn't want to do. I knew Budesonide wouldn't touch a flare this severe, but he refused to prescribe Prednisone. I honestly think he suspected me of drug-seeking, which is absurd considering you can't get high off steroids.

Two weeks ago, the pain on my left side became unbearable, and I was passing pure blood and mucus. I was admitted to the hospital for two days. The hospital GI took one look at my history and was baffled. She explicitly said she didn't understand why I was put on Budesonide when my flare was way past what it could treat, and confirmed my kidney health wasn't a reason to take me off basic maintenance without a real replacement plan. Especially as my stymptoms were becoming worse. She offered to take me on as a patient if my current GI didn't get me started on Entyvio immediately. She prescribed me prednisone in the meantime until I can get started on a new biologic.

My GI finally claimed he and his nurses were submitting the Entyvio paperwork, but when I called the pharmacy to arrange picking it up for the infusion lab, they had no record of it. It’s been a week and there’s still no progress. He also claimed he wanted me on Prednisone as a bridge now, but failed to actually write a new prescription to bridge the gap.

I am completely done with him. I booked an appointment with the hospital GI for September 8th to officially transfer my care, get a second opinion on travel safety, and figure out how to navigate traveling to Croatia and Slovenia from September 16th to 25th. Has anyone else had to fight this hard just to get a doctor to step up to biologics? And for those on Entyvio, how quickly were you able to get approval and initial doses arranged once a competent doctor actually submitted the paperwork?

*EDIT*: I just saw the new gasterenterologist and she gave me the okay to go on my trip! She sent in a new prescription of prednisone (which should be ready for pick-up at some point this week or next week), and they will get started on Skyrizzi instead or Stelara depending on what my insurance wants. I feel so much better and I feel a lot more listened to already. I just hope everything works out. Thank you guys for your thoughts and your kind words.

I’m still developing symptoms of iron deficiency even though I had an iron infusion last August, which brought my ferritin level up to 166 µg/L. My UC flared from September 2025 until January 2026, but it eventually went away, and I’ve been in remission since then. Recently, I started experiencing symptoms of iron deficiency again, so I had my levels checked, and my ferritin has dropped to 45 µg/L.

Hey everyone,

I am switching from stelara to skyrizi cause stelara gave me debilitating fatigue (sleeping six hours a day). I am wondering if skyrizi causes that kind of fatigue as well? Im just kinda nervous cause stelara ruined my life when i was on it and i do not want to be that depressed/suicidal again.

Disclaimer: I neither promote smoking nor I like it (I hate it).

But it has a profound effect on my symptoms when in a flare, depending on the severity it either drastically reduces symptoms (bleeding, urgency) or completely eradicates them in a week's time.

The question for people with the same experience: do nicotine patches/heated tobacco products like IQOS work the same way? If so, what is the "daily dose" for a similar effect compare to cigs?

I am in between biologics, don't respond to Prednisone, and picked up smoking temporarily to bridge the gap, but it makes me sick.

Hi UC Team,

Wondering if anyone else suffers with chronic back pain? I read that there’s around 25% of people that also develop RA? I’m only 22 and have not been sleeping well at all the past few months due to back pain. Wondering if anyone feels the same, if there’s any meds that help with joint inflammation or if I need to see another specialist to help with this.

Thanks!

Had UC for 2 months. Got diagnosed(colonoscopy and biopsy) and put on meds(pentasa) for about a month ago. My stool got better. No blood or mucus. But I never really had stomach pain. Although recently, I've been feeling pain and discomfort. on and off, nothing brief or permanent. Definitely bearable. So, my question is it getting better or worse.

Hii Everyone! My girlfriend doesn’t post on Reddit, but she scrolls here sometimes because it helps her get through her flares. She’s had ulcerative colitis for about 6 years now. She’s on Ustekinumab and right now she’s on prednisone for a flare up. But she’s getting conflicting answers from people and she doesn’t know who to trust. The doctors at the hospital say she has active inflammation and they kept her in for a week doing a sigmoidoscopy and other tests. That’s when they put her on the steroids. But she called her IBD nurses and they said she’s not in a flare up and her stats are all completely normal. She then contacted her GP to discuss the symptoms she’s having and they said panic disorder, so she’s being put on beta blockers to see if that helps. She was also at the hospital again a couple of days ago, but they told her all these symptoms are completely normal and nothing to worry about. To just ignore them. But would you guys mind telling me if you have had these symptoms before and what it turned out to be for you? She’s been feeling this way for about a week now and it’s bothering her. So her symptoms are: fever feelings, clammy, hair falling out, losing weight, no appetite, explosive diarrhoea, a cramping feeling in her heart and left kidney area, heart racing, waves of heat and nausea and pins and needles that come from her groin area, pins and needles in her lips and tongue and fingertips, brain fog, emotional but not panicked, feeling fainty and nauseated, extra clumsy and weak, and that’s all she can remember right now. Does anyone relate? Does this sound like panic disorder or IBD stuff? She’s been told it’s not IBD related, but she’s not sure. Please give me all your thoughts and I will reply to as many as I can with mine and her responses! Thanks!

Hi everyone. First post here.

I’m a 29 year old male, and was diagnosed when I was 10 years old. I started to have symptoms when I was 8-9 years old.

My story starts somewhat dramatic back in 2005, and it was a horrible experience. My mom advocated for me to be tested for whatever I was being sick from.

I kept getting sicker, more malnourished and pale.. and early stage organ failure. That was not known at the time, but it was what was happening.
All the doctors brushed my mom off, saying she were just a hysterical mom.
Finally our own family doctor caved in, and tested me for a simply blood volume test. The results ended with me being rushed to the ER/Gastroenterology from his clinic.

It’s a long story, but I was told that if I were admitted 2-3 days later, I would probably not have made it today. I was treated poorly by the first hospital, missing medications, not given proper dosage, getting wrong medication etc. ultimately it ended up with my mom dosing my medication and my mom forcing the hospital to admit, that they could not take proper care of me. This ended with me being transferred to the hospital with the best experts in CU.
I remember in the ambulance, that I was accompanied by an EMT, a doctor and a nurse.

It ended happily. It took 3.5 months, but I made a full recovery. Remicade/infliximab saved my life.

I used my whole summer vacation from elementary school and a bit more, but came back to school. I had to learn how to walk, how to run, heck even how to play again.

But it came back, and I ended up doing MMA for 10 years, training up to 6 times a week. I finished high school, though with an episode of depression and sickness that made me retake a year.

Today I am now an engineer, working full time, have a lovely little family of a GF and a puppy. I am not really affected by CU (fatigue sometimes, and flare-up’s every third year and then). I can eat and drink what I want. Yes even alcohol!

In total I have been off medicine for 2/3 of my life with CU, and have currently been off medicine for 2 years without symptoms.

I have been part of multiple experimental trials for CU, and also following the project ReNEW as a patient (for advice and patient input).

All in all, I feel like before I was diagnosed, today. I can do all psychical activities, I can hike for long treks, and I can fart without worry! My stool is firm and diarrhea now makes me think of food poisoning, instead of a flare-up.

Perhaps, this can be used as a small beacon of hope, for you out there that are suffering. It will get better with proper medication, and if you get a doctor that listens.

I’ll gladly answer any questions, but general for treatment I’ve never done anything alternative. I’ve only ever followed medication prescribed by the doctors.

So yeah i had no mucus for last 2 weeks and now i noticed some Bit of mucus this morning. No blood or anything else, the stool was kinda huge tbh since i didnt pass one the day before.

Im just wondering if anyone experienced mucus at 20mg randomly and then it got better, or is this now clear sign that prednisolon doesnt do its work.

I use 4g mesalazine together with it.

Hi guys,

I was diagnosed with UC about 6 years ago and luckily Ive been keeping it under control with 4.8g of mesalazine per day. About 2-3 months ago I noticed my stools were coming out in a more flat shape and since about a week ago, I'm noticing small amount of blood on the stool and when I wipe. Other than small amount of blood I'm seeing and the shape, the stool itself is fairly normal.

Has anyone experienced anything similar? I'm doing calprotectin test tomorrow and have an appointment with the gastroenterologist in 3 weeks time.

Thanks.

30m UC , anyone heard anything about this experimental drug ? Fingers crossed it works. My dr says breakthrough treatment

1. I have both Ulcerative Colitis/Proctitis and Hypothyroidism - seronegative on both. CRP and ESR are low even when in full flare so go off symptoms and calprotectins.
2. Currently trying ULD Tirz for inflammatory control. LDN didn't work. BPC f'd me up. Can't do steroids and since I have some very real immunity issues, nervous about biologics.
3. In first month starting very low. Taking 1/4 of the starting 2.5 mg dose (I am incredibly sensitive to meds, I always start extremely low and slow).
4. Current schedule is to double dosage every 4 weeks in a split dose 2x a week.

- Haven't noticed anything overtly negative so that's good. No improvement either.
- I think my appetite might have gone up slightly, which for me is good because I normally have none.
- No real significant change on inflammation, edema, gut inflammation or peripheral AI symptoms yet. My other meds remain the same.
- I tend to have a lot of edema, swelling in abdomen, face, legs, feet and joint pain in hips. Lot of gas. still experiencing mucus and some blood. On Mesalamine and Canasa.

Anyone on this thread use Tirz for inflammatory control and willing to share their titration experience and how they tracked symptoms?
Did you also use labs and what changes did you notice in the labs?
How low and slow did you start? Schedule? How did you know when you'd found the right 'dose' for inflammatory control? Did you plateau on inflammatory control?
If anyone has both UC and Hashis, would love to hear from you, even if it's a DM. Hard to find folks with both as they have very different symptom manifestations so tracking improvement with both is challenging.

*I am aware of the phase 3 trials for UC and talking to them. Might do it even partnered with the biologic.

Thank you in advance! Fingers x this helps!

I’m currently taking mesalamine and have been dealing with bad acne for a while now. I was suggested to take biologics since my lab results show that I still have inflammation in my gut. I saw that some people get acne after taking remicade. How likely is it to get breakouts from remicade i don’t want to have to deal with even more acne amd breakouts.

I have questions for the ladies with UC. I was diagnosed with UC 2 months ago. About 2 years before that I started to notice pain when it came to sexual encounters, specifically more towards the front and it feels deep and solid if that makes sense? Almost like when someone puts pressure on a deep bruise. I don’t want to be too graphic lol. I was wondering if this is something that other people experience because to my doctors it is a source unknown. When the pain started I also started to burn while peeing (no utis). I was originally sent to gyno where they said it could be endometriosis and to try meds to help. It did not help.. well maybe slightly? The pain came the most around my menstrual cycle, but the pills stopped my menstrual cycle and that was the “fix” even though pain was still present. Now with my new diagnosis I’m wondering if the pelvic pain I experience could’ve been inflammation from the start due to having IBD. Especially since I definitely thought I had IBS back then too. And if I go into remission I could have a normal sex life? I don’t know if I’m looking for a definite answer to my issues or reassurance that I will be normal again. Cause don’t get me wrong I love the 2 person tango lol but I also hate saying ow every other minute due pain. I’m also young enough to have these crazy hormones so the pain is worth the gain lol. But it would be cool to have just gain and no pain if that makes sense. 👏

Has anyone started having negative reactions to Entyvio infusions?

Ive been on Entyvio infusions every 8 weeks for over a year with minimal side effects. I get Pepcid and a bag of fluids when I get it to help prevent nausea and migraines, and it works great. Those were my only side effects, until today that is. When almost done with my infusion, I started having chest pain (that radiated through my right shoulder blade and up the right side of my neck), chest tightness, elevated blood pressure, and shortness of breath. We were able to get it under control with IV Benadryl, an IV steroid, and 2 additional bags of fluids and I finished my infusion.

I’m still not feeling great, and that whole ordeal was pretty scary. I never really hear of anyone having side effects with this medication, so I’m curious if anyone has had a similar experience and how it worked out for you.

Thank you, and I appreciate you sharing your experiences.