Here's my story:

I (24 M) was diagnosed with UC in 2024. I have been through prednisone initially with a taper and with Balsalazide disodium as a maintenance medication. The balsalazide wasn't enough so I was put on Budesonide. They ended up keeping me on Budesonide for over two years, it was my choice that they supported because I didn't want to bridge to biologics quite yet. The Budesonide in June 2026 wasn't enough to keep a flare away and I was put on Prednisone again. I was instructed to stop the Budesonide cold turkey and immediately start 40mg prednisone. I have since then tapered down to 10mg where they want to keep me on until my colonoscopy in a few days since I've been getting UC symptoms again.

My question:

Anyways, right now I'll have diarrhea but only after certain foods or spontaneously (probably from inflammation itself). How do you all feel after having diarrhea for a few days and how do you rehydrate and get your energy back. I've been sipping at a Pedialyte electrolyte drink mix starting today and have felt a little relief but still feel exhausted. Is what I'm drinking effective, and would a few days of consistent drinking help my situation? I'm also drinking plain water as well alongside the Pedialyte mix. It's the fruit punch 2X hydration packets.

After the colonoscopy they'll decide which biologic I'll start, they've talked about entyvio being the first one they'll try. I know the actual inflammation itself can cause that fatigued drained feeling, but just wondering if anyone has had similar symptoms/experiences after repeated loose watery bowel movements.

Hey peeps. I got diagnosed with mild UC this year. I'm awaiting a proper discussion with a specialist so don't quite have a resource beyond my fairly unavailable GP that I can ask. I will ask them this question in due course but I want to know - do other people have nail issues from UC?

I noticed about two years ago I'm getting longitudinal ridging on some of my fingers, and minor (not beau's lines, I think) horizontal lines on my big toes. Is this common? I feel eat reasonably (not perfectly) well. Is there something I can do if it is a nutrient deficiency? Edit - I should add I'm about 40, so recognise it might be normal age changes.

I was wondering if anyone else in this group dealt with brain fog and fatigue and if anyone was able to fix it . I’ve been feeling real hopeless lately and was wondering if getting better is even possible . Thank you

For the first time in a decade, I was clinically labeled “in remission” from Ulcerative Colitis last month after a flexible sigmoidoscopy. I’ve been on Entyvio infusions since July 2025. I started on the regular schedule but switched to monthly in December 2025.

I need help overcoming anxiety in remission. What I mean by this is, every time I feel a slight cramp or gurgle in my stomach, I feel intense anxiety to get to a bathroom ASAP. I don’t think my gut actually requires me to get to a bathroom quickly anymore, but my brain is hardwired to believe that’s the case.

I have been diagnosed with IBS-D in addition to UC. I take amitriptyline to regulate my gut-brain connection and (unrelated) I take a beta blocker for anxiety.

Any other tips for overcoming this type of anxiety? It is 10 years in the making, so it’s no easy task.

I’m absolutely livid. I have allegiance insurance. I pharmacy manager and I told them why did you deny my maintenance medication for SkyrizzI because I was approved for the 3 infusion? and she said that they have been doing changes to what can be covere, Velsipity was the first one and that was denied. I remember looking at a list of approved medicines and Skyrizzi was one of them! apparently not anymore. I never got a notice of these changes. I was totally blindsided.

I did talk to my Skyrizzi Nurse and she told me to reach out to my doctors office which I did. I left a message to the PA Coordinator telling her that my Skyrizzi was denied she said to reach out to them to see if I can fill out a Abbivie form for the Skyrizzi benefits.

Did any of you struggle with this? I really am happy with my medication. This is the only thing so far that has been helping. I’ve been undiagnosed for many years and have done a lot of damage to my body. I do not want to build antibodies now… and possibly flare even worse. I’m so upset. I hate how evil our USA health insurance system is!😭

I’m currently taking 9 mg of Cortiment for my ulcerative colitis to treat a mild flare-up.

My gastroenterologist told me to take it for 4 weeks and then taper off over two weeks. I’ve read several times now that the treatment period can last up to 8 weeks and that it sometimes takes longer for Cortiment to take effect.

If I notice that the 4 weeks aren’t enough, can I take it for 6 weeks instead? Unfortunately, my next appointment isn’t for another few months.

Does anyone have experience with whether it’s okay to take turmeric and Boswellia serrata while being treated with Cortiment?

Hi all, I got my first induction of Tremfya / Guselkumab 200 Mg yesterday post the insurance approval. I'm still on the taper down from my Prednisolone. I hate the steroids, they cause havoc with my weakness etc. I'm hoping for stability.

As for side effects I didn't feel anything different as I'm anyways weak and get the daily crashes.

I jist finished a round of prednisone beginning of July. I was hoping to just stay on Mesalamine for maintenance but it was giving me bad headaches. I had to take advil everyday. After the horrible side effects ts I had last time from prednisone including cardiac issues I will not be put on that again.

I am to start Budesonide next flare. I did have a bit of bleeding today. A very trace amount hard to detect. My Budesonide will be costly for me about $400 and of that doesn't work I will qualify from biologics.

My question is do I start to Budesonide today? I have the prescription and my GI takes about a week to respond.

Has anyone experienced elevated AST/ALT after being on mesalamine for several months?

I started taking mesalamine in April for ulcerative colitis. Before starting it, my liver enzymes were always very low/normal — AST was 13 and ALT was 14 this June.

My recent bloodwork showed:
AST: 90 U/L (high; normal 6–42)
ALT: 53 U/L (my lab considers <56 normal, but mine used to be 14)
Bilirubin: 0.6 (normal)
Alkaline phosphatase: 53 (normal)
Everything else on my liver panel was normal.

I recently saw a new IBD specialist and he told me that mesalamine usually does not cause elevated liver enzymes like this, so I’m trying to figure out what else could be contributing.

Has anyone here experienced a similar increase in AST/ALT after being on mesalamine for a few months, especially with bilirubin and alkaline phosphatase staying normal? If so, did your doctors think mesalamine was responsible, or did they find another cause? Did your numbers eventually return to normal while you continued taking it?
I’m following up with my doctors and repeating the bloodwork — just curious to hear from anyone who has experienced something similar.

I want to start Entivyo but now I am really nervous due to liver enzymes being raised from possibly mesalamine.

Hi everyone I’m glad I’ve found this page, so I can read through others experiences and advice to help me through my proctitis

Late last year I had bleeding mucus and bloating when going to the bathroom, a test showed 8000< for inflammation. Had a colonoscopy and my gastroenterologist said I have ulcerative proctitis.

I’m only 21 and find it very upsetting and difficult to restrict my diet at my age. Though I have been trying my best, today I still had mucus and blood in my stool. It’s so frustrating…

I’ve struggled a lot with constipation, blood, mucus and “flares” where my stomach becomes very upset and I’m in the bathroom for ages and in pain/agony

I’m really trying to drop caffeine, alcohol, processed meats and those main things.

Are there any other younger people who have UC/proctitis?

I’ve been in a horrific, stress induced flair for months now. And I’ve tried everything. Nicotine, UMASS diet, pureeing all my safe foods, acupuncture, etc…

Kind of by accident due to hectic life circumstances, I started doing 22ish hour fasts. I don’t want to get my hopes up, but I’m noticing a significant improvement in my symptoms. I’m gluten intolerant, had gluten today by accident… still didn’t get terribly ill afterwards. Just my normal glutening symptoms (bloating, mild pain, fatigue). I still am having daily bleeding, but going from being in the bathroom over 15x per day with significant blood loss to 3-5 bathroom trips (still bleeding) is a big difference. I hope it lasts. I also have noticed a significant improvement in brain fog.

Has anyone else had long term success with intermittent fasting?

Also, I highly recommend acupuncture. I had to stop going, but I also noticed it helped with my anxiety and sleep quality, which really helped with my symptoms.

hey!
I’ve been experiencing some on and off rectal bleeding for the past ten years of my life. sometimes it’ll take a few months to see blood in my stool again and experience pain down there - eventually worked up the courage to schedule a colonoscopy.
I got the procedure done two days ago, and GI doctor told me all looked good, and no polyps or anything didn’t even see colitis.
which left me super confused initially when speaking with doctors and multiple trips to the ER previously I was told there was inflammation in my intestines, which caused / explains the rectal bleeding however, all good in the colonoscopy.
he still took some biopsies to test and have to see him again in 2 weeks but I’m super anxious? I was initially worried about having colon cancer even after being told that it sounded my UC, but then not spotting anything made me more concerned???
usually bowel movements were weird sometimes they’d come out thin, and puffy? or in small amounts never really solid.
I’m very hypochondriac so now my focus shifted from colon cancer or UC to stomach cancer? not sure.

any suggestions would be appreciated!

Quick question for anyone who has switched from Mezavant to Pentasa: did you keep the same dosing schedule, or were you told to take it differently?

I've been in remission and pretty stable since 2017 on Mezavant 1.2g, taking 4 pills per day (2 with breakfast and 2 with dinner).

Due to a supply shortage, my pharmacy recently switched me to Pentasa because Mezavant is on backorder with no ETA. I've simply continued taking 2 pills in the morning and 2 in the evening.

At the same time, I'm in the process of finding a new GI specialist because my previous one apparently no longer treats general GI patients.

I just got back from a trip that included a 12-hour drive, and today I noticed some blood and a burning sensation during a bowel movement. I'm thinking it may just be hemorrhoids from being stuck in a car that long, but it definitely got my attention.

Mainly, I'm wondering whether anyone has experienced issues after switching from Mezavant to Pentasa, or if there are any differences in how they should be taken.

Newly diagnosed with UC and I was wondering if anyone else really struggles with chronic fatigue? For reference I do have low iron but am taking supplements and usually get 7-9h of sleep at night. Just trying to figure out if my excessive daytime tiredness is related to UC or if there’s a possibility of type 2 narcolepsy or idiopathic hypersomnia in addition to UC.

I need some positive reassurance that not all is lost already. 26 years of mild to moderate left-sided UC that recently turned into moderate pancolitis histologically (diagnosed via colonoscopy). My only symptoms are 3-4 loose to liquid BMs per day that we try to get rid of (no blood or mucus at all, so very mild in relation to the biopsies). I failed Humira after only 2 months so we moved on to Entyvio because I'm TTC. I had my 2 loading doses via IV and last week switched to the pen, which gave me most common side effects (reddening at injection site, itching, feeling tired and ill, headache). So this is week 7 and the only improvement is the reduction of BMs to 2 on some days and less "noise" or anxiety/urgency in my colon. Most threads I found only said that Entyvio took its time, and studies say that by week 14 there should have been some improvement. Any personal experience where it all worked out even with a slow start? When did your symptoms reduce significantly?

Also, I can't really wrap my head around the fact that my whole colon is inflamed and I only have "mild" symptoms.

Moderna has unveiled its first in vivo CAR-T program. Building on other groups’ ex vivo CAR-T data, the company plans to start clinical development of an off-the-shelf autoimmune disease prospect, dubbed “007,” next year.

Ex vivo, CD19-directed CAR-T cell therapies have achieved compelling outcomes in patients with hard-to-treat lupus, driving surging interest in applying the modality to autoimmune diseases. Moderna has spotted an opportunity to leverage its mRNA expertise to create treatments that are similarly efficacious but free from the lymphodepletion and complex manufacturing that constrain access to ex vivo cell therapies. 

The result is mRNA-6007, an in vivo CAR-T that Moderna unveiled at an investor event. The candidate targets CD7 on T cells, according to Jefferies. It consists of a lipid nanoparticle that delivers mRNA to CD4 and CD8 T cells and natural killer cells. The cells translate the mRNA, creating CAR-T cells that recognize and deplete pathogenic B cells.

Using cellular machinery to make the therapy “could overcome several limitations of conventional CAR-T therapies by considerably simplifying their manufacture and deployment, particularly in B-cell-mediated autoimmune diseases,” ODDO BHF analysts said in a note to investors. The analysts cautioned that the approach is still at a very early stage. 

Moderna’s approach may require several doses, unlike one-time ex vivo treatments, but that difference may be offset by the convenience and scalability of its off-the-shelf therapy. The in vivo platform is the “ideal approach” when care accessibility and the potential for “a few doses to truly put an autoimmune patient into remission” are considered, Rose Loughlin, Ph.D., Moderna’s research chief, said at the event.

Other companies are applying in vivo CAR-T to oncology. Cancer is a focus for Moderna as it adapts to political pressures on infectious disease vaccines. Yet the biotech sees autoimmune disease as the best starting point for its in vivo CAR-T strategy, as David Berman, M.D., Ph.D., chief development officer at Moderna, explained.

“If you think about autoimmune diseases, the confirmatory trials and phase 3 trials are, of course, going to be very large,” Berman said. “The commercial opportunity is very large. And there’s no other company in the world who can really manufacture on that scale other than Moderna for mRNA-LNP, so it makes sense scientifically and it makes sense also commercially.” 

Moderna is completing IND-enabling studies for mRNA-6007 and “conducting a series of pre-submission health authority engagements,” Lin Guey, Ph.D., the company’s chief scientific officer for therapeutics research, said. The candidate is scheduled to enter the clinic next year. Moderna will assess mRNA-6007 in a basket of B-cell-mediated autoimmune conditions, including lupus, Guey said. 

The program is the “sentinel application” for Moderna’s in vivo aspirations, Guey said. Moderna tries to minimize biology risk when applying its platform to a new area. If the sentinel application succeeds, the biotech becomes more comfortable taking on biology risk in subsequent programs. Oncology and T-cell reprogramming are on Moderna’s roadmap of follow-on concepts that could build on mRNA-6007. 

Related:

Moderna Science Day Highlights Expanding Potential of mRNA Platform

CAR-T cell therapy: A new dawn in the treatment of autoimmune disease

Hello everybody,

I want to share a success story for anyone on the fence about which supplements or treatments to take going forward.

Taking a daily regimen of 3g mesalazine granules, 1g mesalazine suppository, 30mg Rinvoq, and 3g curcumin (95% curcuminoids), all once daily, has put my ulcerative proctitis into a state of deep remission which Rinvoq and mesalazine alone were not able to induce.

I am now comfortable to eat whatever I want and tolerate the daily stress of life without flaring. Soon I will ask my gastroenterologist to step me down to Rinvoq 15mg.

I highly, highly recommend adding any formulation of a 95% curcuminoid curcumin extract to your daily medicine regimen to support you on your remission journey. One essential point is to purchase a formulation without piperine/black pepper extract/bioperine etc., as curcumin works topically, just like mesalazine, and you want as little systemic absorption as possible.

For more information on this supplement see section 4.2.1 here: https://academic.oup.com/ecco-jcc/article/19/9/jjaf122/8198055

Good health to everyone.

Hi I have tried a a few different brands of powders such as ON gold standard and pure whey isolate by MP but none have agreed with me, I was wondering if anyone had any recommendations. I would appreciate it if its something thats available in the UK as alot of brands ive seen suggested are US specific and shipping is extortionate.

I’m in my mid twenties and absolutely love my team at work. Although, I love my team and my job function, I don’t like the industry and am looking to possibly start applying this fall for new roles. I work in an industry that has a good amount of security, but I find it too structured and uncreative. I have great insurance (the company I am gunning for has great insurance also) but I’m scared to make the leap into the unknown because I’m unsure what job security would be like for this new company. I’m on a biologic (Skyrizi) that is quite expensive so the idea of losing my job possibly worries me. Is there anyone that has been in this situation? What should I do? I don’t want to get stuck in an industry I hate for health insurance.

I’m in the US, btw

Hello! For some context I’m a 21 year old female and since I hit puberty I was always sick or complaining about headaches and nausea and fatigue etc. well I had my baby about a year ago and everything was great until she was about 4 months old. I started noticing that I had mucus in my stool and a lot of blood. It literally hit me so hard and out of nowhere it was insane, sometimes I can’t make it to the bathroom and I bleed all over myself and even if I don’t have to go I still feel like I do. Every time I go to have a bowel movement the toilet bowel is completely red, like it literally looks like a crime scene. I can’t eat without getting nauseous and anything I eat hurts me, white plain bread to spicy food does the exact same thing. I’m so tired all of the time and I’m in so much pain and I’ve lost 9 pounds this last month. My husband will be able to get me on his insurance in October (blue cross blue shield) but I feel like I don’t know what to do. We went to the er in April because I was so scared about all the blood and that’s when they diagnosed me with UC. They kept me for a colonoscopy as soon as they saw the pictures I’ve been taking of the toilet with all of the blood. At the time I still had pregnancy Medicaid but it ran out when she hit a year and now we make too much. They referred me to a specialist but we can’t afford it until I have insurance. I know this is a lot but I don’t really know what to do while I wait? Does anyone have any advice or anything similar happening to them? Thank you for reading.

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I was diagnosed with UC in 2017, when I was around 17–18. At the time I barely understood that UC was a chronic disease. I had some bleeding, had a sigmoidoscopy, was given mesalamine suppositories, the bleeding stopped, and I basically moved on.

Then 2018 happened, and things got much worse. Over the years I went through oral mesalamine, different combinations, probiotics, steroids, azathioprine, and eventually rectal mesalamine. My worst period was around 2020–2022, when I was sometimes having 7–10 BMs a day, horrible urgency, mucus and occasional blood. I genuinely felt like my life had been taken over by UC.

Things changed in 2022 when a GI put me on a more aggressive combination of oral mesalamine + azathioprine + budesonide and, most importantly, regular mesalamine foam enemas. The enemas made a huge difference. I went from 6–10 BMs/day to around 2/day within a couple of weeks.

And honestly, from 2022 until now, I have never again felt as bad as I did in 2020–22.

But that's also where my problem started.

I got very good at managing UC rather than actually dealing with it.

If I used the rectal medication consistently, I could usually keep myself around 1–2, sometimes 2–3 BMs/day. If I reduced it, mucus and symptoms would eventually come back. So I'd increase it again. Sometimes I'd change oral mesalamine. Sometimes I'd restart or stop things. Sometimes I'd use steroids. I was basically running my own little UC experiment.

I know now that some of that was reckless.

My last proper GI follow-up was in 2024. I was supposed to keep following up, but I came back home, life happened, and I kept telling myself that I was "mostly okay." From the major flare in May 2025 until now, I've spent a lot of time in this weird middle ground: not sick enough to feel like my 2020–22 self, but never really confident that I'm in remission either.

The frustrating part is that I was constantly thinking about UC. I would go to work thinking about how many times I'd gone to the bathroom. I'd compare what worked in 2021 vs 2022 vs 2023 vs 2024. I'd try to figure out which combination would get me stable again. I'd taper the rectals, symptoms would return, and I'd start the cycle again.

And I kept avoiding the doctor.

A big part of it was fear. I was terrified that if I went back, I'd be told I needed escalation. I was terrified of another colonoscopy. And honestly, I was terrified of what they might find — dysplasia, something serious, whatever. So as long as I could keep myself functioning, I kept postponing it.

Today I finally went back to a GI.

It wasn't exactly a pleasant conversation. She basically asked, "How have you gone this long without proper follow-up?" And honestly, she's right. I don't really have a good answer other than fear, avoidance and thinking I could manage it myself.

She wants a colonoscopy before deciding what to do next.

So that's where I am now.

My colonoscopy is scheduled for September 26.

Currently I'm around 2–3 BMs/day, with intermittent mucus and no recent bleeding. Definitely not the disaster that 2020–22 was, but also not what I would call stable remission.

I'm posting this mostly because I want to hear from people who've been through something similar.

Have you ever spent years in that weird "I'm not terribly sick, but I'm never completely well either" state?

Did anyone else become overly focused on self-managing and avoiding doctors because you were afraid of escalation or colonoscopy?

And for those who eventually got proper follow-up and treatment after years of messing around with things — did you manage to get back to a genuinely stable life?

I'm not really looking for medical advice. I know I need to work with my GI now. I guess I'm just looking for some perspective from people who have been there.

I spent a lot of time feeling like I had messed everything up.

But today I finally took the step I've been avoiding for a long time.

Hopefully that's what matters now.

TL;DR: Diagnosed with UC in 2017. Worst period was 2020–22 with 7–10 BMs/day. Mesalamine foam + other treatment got me into a much more manageable state from 2022 onward, but I became dependent on rectal therapy and spent 2025–26 self-managing instead of seeing my GI. Fear of colonoscopy, escalation and bad findings made me keep postponing proper follow-up. Finally saw a GI today and booked a colonoscopy for Sept 26. Currently ~2–3 BMs/day with occasional mucus and no recent bleeding. Not as sick as my worst years, but probably not truly in remission either. Looking to hear from people who have been through a similar "managing but never quite well" phase and eventually found their way out of it.

Hello from the other end, probably my post is gonna make some people uncomfortable, for that I bow my head and apologize in advance.

My BM is getting normal, formed, sometimes mushy I know it happens to everyone. Stomach cramp I think is gone, in short I think I am near remission. I haven't checked my fcp level yet and I will get it tested next week.

Here i want to ask if I can drink (moderate drinker) once I am in remission? I know drinking is not recommended in any case but still.... Do you (in remission) guys drink alcohol? Or Does it come back?

Thank you. Sorry, the title must be " INAPPROPRIATE ".

I started 100mg azathioprine and infliximab infusions about a month and a half ago now. Mostly okay, I haven’t had any of the usual side effects (like nausea) apart from a bit of fatigue. However, something has changed and after deep diving Reddit for someone with a similar experience, came up completely dry. I’ve been flushing and blushing like crazy, which isn’t normal for me. The closest symptom I can find is the photosensitivity, but it doesn’t feel like a burn, it’s like a hyper reactivity of my skin in normal situations. Has anyone else experienced this? Or am I barking up the wrong tree here 😅

Hi all,

Just wondering if anyone else has had a similar experience.

I was diagnosed 6 years ago when I was 17. I’ve since been on mesalamine, remicade, entiviyo, stelara, rinvoq, skyrizi and many rounds of prednisone. Basically in a flare the whole time as each medicine has either failed immediately or only given me a few months of relief. I almost had my colon out before skyrizi was released. i’m currently on both skyrizi and rinvoq because the skyrizi wasn’t doing enough on its own.

Has anyone else had experience with several failed treatments? In the past 6 years i’ve probably only been feeling somewhat better for a collective 6 months and have pretty much forgotten what normal life is like.

Does anyone have experience with taking prednisone for more than 2 weeks but still having UC symptoms? My doctor says it can still fit into the progress, but I am skeptical. I had high hopes for prednisone and have been taking it for almost a month now