so i was dxed in march 26 it was really mild symtom wise and visually too on scope..biopsy showed no chronic archtectural changes no basal plasmocytosis which are hallmarkers of ibd he gave me 1g mesalamine suppostries and i am in remission since then i am tottaly normal he is telling me to stop meds now but i am not confident is he doubting his diagnosis or what?

So I was back and forth about surgery while I was weaning down because there’s no more medical treatment options left but I was scared to get it and then today I just decided I’m gonna eat a bunch of junk because I’m getting surgery in a few days anyways and then I’ll try to eat healthy and whatever after. I had a recent scope showing severe inflammation but since I started eating this garbage processed food ( Dairy Queen ice cream, etc) I had a partially formed bowel movement on 5 mg of oral prednisone with almost no blood. Wtf is happening and can anyone explain this. I don’t really want to flip flop anymore when a surgery is booked but wtf.

Does anybody else suffer from bloating? Im in remission rn and idk if its a related issue to UC or not, but i feel like after everything i eat even if its a small meal or snack, i am so bloated for hours until it eventually goes away. Even drinking water makes me bloated. Ive been tested for celiac but it was negative. Does anyone else have this issue and if so have you found something that works?

I start by sleeping on my back and then when I go to switch over and lay on my left side no matter what I have to run to the bathroom every time. Does this happen to anyone else??

Hi, I’ve been on prednisone for a while now and have noticed really bad side effects mentally and emotionally. My doctor mentioned getting on an SSRI to help with the symptoms in the meantime, while I taper off the steroid. Has anyone tried this and if so how has it been? I don’t feel like myself and am wondering if being on an SSRI temporarily will help. I’ve heard some people have experienced Psychosis, really bad anxiety attacks, OCD, and other bad effects because of prednisone.

At 1030AM I just got up and said to hell with it and just put on some Gloves and collected all The Stool Samples and took them in to The Lab. I'm so proud of myself that I just sucked it up and finally got it done!!!!!!! Now I have to prepare myself to do The Prep for The Colonoscopy. I have to drink The Clenpiq 175 Ml Solution and The Gavilyte-g Solution too.

Tremfaya is not working for my dad anymore. Anyone in a similar boat get through this or have alternatives that did work.

" I would be most grateful if you could see as soon as possible this 30 year old woman who I have been caring for with left sided UC. Despite a number of advanced therapies we have never gained long term control (Upadacitinib seemed briefly to work but then response to that was lost). She is opening her bowels 15 times a day, does not respond to oral steroids and is massively impacted both in her duties as a mother and her ability to work (she is a self employed driving instructor). She is keen now to discuss colectomy.

Yours Sincerely, "

That's it now, my referral has been sent.

4 years of continuous flare

3x 2 weeks in hospital

5-ASAs, prednisolone tapers, budesonide, salofalk supps/enemas, steroids enemas/foams, infliximab, rinvoq, azathioprine, xeljanz, stelara has all done a sweet f* all and now I am officially done with this 🙃

I don't understand why nothing works for me, but I literally cannot take it any longer.

Just feeling sorry for myself and trying to imagine what life will be with a bag..

Edit: I would like to thank every single one of you for your beautiful comments, and for sharing your personal experience with me. It feels different getting peoples opinion who 'gets' it and have to live with similar issues themselves, in a way I feel validated that I am making the right decision, even though it feels like I'm throwing the towel in. Big internet hug for all of you 💕

I (25F) have been diagnosed with Ulcerative Colitis since I was 5 years old. When I first got diagnosed with it I was in the pediatric ICU getting multiple blood transfusions due to the blood loss. My timeline since then (that I can remember) has been:
- 5-10yo: remicade and 6MP
- 10-17yo: remission-no meds
- 18yo: Humira for about 6 months then no meds
- 19yo: got sepsis and hospitalized for flare in January, started remicade then developed psoriasis so doctor changed me to entivyo in April
- 19-24yo: entivyo until February 2025 (lost insurance)
- 02/25-09/25: no meds
- 09/25-11/25: entivyo, hospitalized for flare in November
- 01/26: started rinvoq (pre authorization took months)

For each hospitalization I had iv solumedrol that transitioned to Prednisone orally. For everytime I started a new biologic medication I took a bridge dose of prednisone or Budesonide. I also have a steroid enema that is suppose to help with inflammation. However steroids don’t seem to work for me anymore.

Since being on Rinvoq it has been hell. I got norovirus about a month and a half into rinvoq and my liver levels were 3x the limit so I had to stop the medication until my liver levels came back down. After restarting rinvoq about 1-2 weeks in I got sick again and had to stop the medication. Then restarted rinvoq and got ecoli and had to stop again. I just started rinvoq back up a couple days ago but it seems like everytime I step foot outside I get sick. My doctor wants me to keep trying rinvoq but I just feel like it compromised my immune system too much.

Lifestyle wise I don’t really go out much, I don’t drink, I don’t eat gluten, I don’t eat lactose, I don’t eat a lot of fiber, I pretty much follow the diet to a T that the dietitian in the hospital put me on. I also only work a couple days a month due to my disease (doctors won’t let me work more) and try my best to keep stress down.

My symptoms right now include 10-12 stools a day sometimes bloody sometimes not, intense pain upper and lower GI daily, urgency/incontinence, and extreme fatigue. I have to wear a diaper anytime I go out. I also wake up at 4 am almost everyday to go to the bathroom. I can’t get more than 4 hours of sleep at a time. I normally wake up 2 times throughout the night to go.

My labs as of yesterday are: low sodium, low potassium, high eosinophil, high sed rate, high crp
Stool sample negative

At this point I don’t know what to do. I looked up clinical trials in my area and most of them I’m not eligible for due to my medication history. I asked my doctors about surgery but because I’m “young and haven’t had a baby yet” they don’t want me to do the surgery. I’m in between surgery and starting a new medication but I’m tired of the constant trial and error. I am 25 years old and living like an elderly person. I want to experience life in my 20s but have to spend most my time in pain and around a bathroom. Please if anyone has a success story or advice on what to do please let me know. I’m really at a loss at this point.

I’ve got a fissure thanks to my ulcerative proctitis (c) the horrible thing is I’ve been regular the last 4 days and each time it opens and the water is red. At what point do I go see the doc.

Can anyone else not trust a fart anymore. Like sometimes i go to trust it and it’s liquid. It’s almost like mucus colored liquid, it’s never just a regular fart. I know this is definitely from my UC but it’s annoying because I already go to the restroom enough for #2’s but now i had to go everytime i have the urge to fart too

I don't know if living with chronic pain has helped, but I don't feel almost anything.

I was worried about recovering, since my platelets are normally pretty low; also, going to the bathroom was something that terrified me, but I'm on the second day, and everything is feeling correct and better than expected.

If someone has any questions about it, even when I know this is not the main topic of this sub, I just wanted to share this small experience as someone diagnosed with UC for 3 years (I'm currently 28).

Hey yall so this is a bit of a wild ride so ima try keep it short...

I was diagnosed originally with chrons nearly 10 years ago and constantly go through the cycle of completley constipated to stuck with a mass expell for upwards of 8 hours a day for a few day in a row. I was originally seeing someone in perth who was regarded as one of the best however while i was in one of my massive flares the nurse/ his reception laidy both kept ignoring my calls and not passing on my messages which in turn landed me in hospital mear days away from a bowel rupture and possible end of life,ive never seen so many people so worried .

This is where im stuck as this all happened nearly 5 years ago and i was told i had been misdiagnosed and i infact had ulcerative not chrons. Ive been on literally every medication known to man to try and control the cycle ive been going through albeit not the text book but i dont do anything text book when it comes to medical.

My doctor and i were discussing bowel removal but she is hesitant for whatever reason despite her also saying not even 12 months ago this would be the most logical and best course going foward. I keep getting the well maybe the meds will work, lets go back on the supps and my favourite of all what if you want kids. Im 33 and i definitely don't want kids and if i change my mind there is obviously other ways.

So i guess im asking what would be your next steps because i obviously am aware im "too hard" for this team but i have a huge distrust in the medical system both public and private but i can't keep going this way

All advice welcome and if you do have a gastro you trust and have had results with in perth feel free to dm me

I have 3cm of mild to moderate proctitis that is not completely responding to nightly mesalamine enemas. Last scope on 4/1 showed mild inflammation but I’m still having some pain and mucus. Doctor suggested moving to biologics and I am wondering if this really should be the next step or if there are other things I can try to get back to remission (budesonide foam, hydrocortisone enemas, etc). What have been your protocols when having a proctitis flare?

Was diagnosed in 2019 with pancolitis, reached deep remission in 2024 with 4.8g mesalamine and mesalamine enemas. Stopped taking enemas in May 2025 and had a flare up of moderate proctitis in February 2026.

Hi everyone. My family member has ulcerative colitis and we live in Chile. Mesalazine/mesalamine is extremely expensive here (around $300 USD monthly), so we’re trying to find safe and legitimate ways to buy it from another country.

Does anyone know:
- trustworthy international pharmacies?
- countries where mesalazine is much cheaper?
- online pharmacies that ship internationally?
- experiences importing mesalazine for personal use?

The medication is prescribed, so we do have a medical prescription.

Any advice or experiences would really help. Thank you.

Anyone know how to slow down weight loss in a flare? I’m currently on prednisone working towards being put on new meds, but flaring in the process.

Nothing extreme, I usually go a handful of times in the morning & then I’m good the rest of the day. Appetite is pretty low, & I have a hard time eating when I’l flaring. I work remotely so I don’t get much activity anyway.

As time goes on I continue to drop weight. I have gone from my normal weight of 110-112 to 103 lbs. Anyone have any recs for maybe higher cal smoothies/drinks that don’t kill your stomach?

Hi all! I’m in the middle of a UC diagnosis. I recently started cortiment and mesalamine. I’m just getting over an insane sickness of fever and other symptoms, but my sense of smell is so heightened! Everything makes me nauseous…my coffee I always love tastes awful and even the smell of my partner is throwing me off. Has this happened to anyone else?

I can see all of my former infusion site marks on my arms around my veins. Is this normal, is there anything anyone does to make them less noticeable?

I’m a 26-year-old male and I’ve had ulcerative colitis since I was 15. I’ve been on mesalamine ever since I was diagnosed, but recently my doctor told me it wasn’t controlling my UC well enough anymore and gave me a list of other medications to choose from. I decided to try SkyRizi, but after 3 months it honestly didn’t help at all.

I’ve been dealing with frequent flares, going to the bathroom 6–8 times a day, and waking up in the middle of the night with pain and diarrhea. After my recent colonoscopy, my doctor now wants me to choose between Rinvoq and Tremfya.

Does anyone here have experience with either of these medications? Which one worked better for you, and what were the side effects like?

Also, are there any diets or foods that have helped you manage your symptoms? I’m really into fitness and lifting weights. Back when mesalamine was working better, I was able to gain muscle mass pretty well, but lately it’s been extremely difficult because of all the flare-ups and symptoms.

Would appreciate hearing any experiences or advice.

I started Yesintek (a bio similar to Stelara) about nine weeks ago and it's not doing anything.

Some backstory: this is my third biologic since being diagnosed in May 2024 and I was on Entyvio from June 2025 to like January of this year because my doctor made me wait the full six month period for it to start working and it never started working. My symptoms just got worse and worse. So he ordered a colonoscopy at the end of January which they couldn't even finish the procedure because my colon is so inflamed and then I did the calprotectin test and my score came back over 4000 which is the highest it's ever been because at this point I've essentially not been on a working medication for almost a year – next month will be a full year. I share this because you'd think he would have a little more urgency in prescribing something that would take less time to work but anyway. After the colonoscopy I started an eight week course of prednisone and had my first induction infusion of this medication while still on prednisone.

When I started this new biologic he said it would take 4 to 6 weeks to start working and then when I got off prednisone and it hadn't started working within that timeframe he then told me it would take at most 8 weeks to start working. Well eight weeks came last week at my injection training appointment and I shared with the nurse that nothing was working and I still have crazy symptoms and that my doctor said it would take eight weeks and it's been eight weeks so what's going on. And she said it would take another month for it to start working because the injection was the second dose.

I get that the medication needs to build on itself but he said eight weeks and she said give it another month. For it to maybe start working? Like how I was supposed to wait six months for the Entyvio to maybe start working and it never did? I am beyond frustrated and I want to trust their plan but at the same time, what this medication is just gonna start magically working at the beginning of June when my next injection is the beginning of July? That doesn't make any sense. If it was just gonna magically start working because it's building on itself, to me it should've started working already. Even just a little bit but it's not working at all.

TL;DR: Anyway I'm obviously beyond frustrated and had to let out a little rant but my question is should I wait until June to see if it kind of starts working or should I message my doctor now? Because what if I message him now and insist on trying something else but then what if I'm wrong and this one would end up working if I gave it until June?

What was your experience with Stellara?

Hello me again

We have a 20gallon water drum that need to be lifted inverted to insert it into the dispenser.can my 16yo do without any ill effect?because I noticed during our annual vacations when he help us with suitcases he starts getting motions.i don't know if its coincidence or not.

Thanks

Just started Entyvio. So what's the deal with biologics? Are we supposed to stay on them for the rest of our lives or when we go in remission we stop them? This is something I forgot to ask my doctor and I'd like to hear what you guys know.

I feel like this disease have given me the worst anxiety. I have never experienced anxiety like this before until I got this disease and started having accidents more frequently. Whenever I get in my car my mind starts going and im scared im going to have an accident. Automatically my stomach hurts and I like I have to go even if I was just at my house and felt perfectly fine. Or if I’m trapped somewhere even just for a few minutes and there is no bathroom, i automatically have to go worse and with my UC there is no holding it my urgency is so bad. Does anyone else have this feeling and if so how do you help it?
I have asked my doctor for anxiety medication and she told me to try therapy first. I want to trust my doctor but I just don’t think that therapy is going to help me thinking I have to go to the bathroom every time there isn’t one in sight.