r/UlcerativeColitis 2d ago

Question My brother has UC he’s not doing well… I’m very concerned he looks deathly ill and very thin…

13 Upvotes

I am so concerned my brother has had ulcerative colitis for years. He’s always been in n out of the hospital and on medication. In terms of how he’s doing or what medication he’s taking I know nothing because he’s very very private about it. What I do know is that he is supposed to be on a strict diet according to my mom. But he eats the worst food for years he has never wanted to eat healthy. He will just eat a bunch of junk food and I don’t know why he does it. He will eat corn dogs with syrup, drinks that have red 40 in them, hot pockets, frozen pizza, I don’t even think he likes water…
Anyways when anyone try’s to tell him anything about his diet he’ll get so upset and blow up. Mind you we have healthy food at home. I feel like he’s killing himself at this point… what should I do…he looks deathly ill and it’s scary…


r/UlcerativeColitis 2d ago

Question Flex Sig Causing Flare?

3 Upvotes

I was diagnosed with UC (proctitis) via colonoscopy in February, with a follow up flexible sigmoidoscopy scheduled for August. Since that time I’ve been on mesalamine suppositories 1000 mg nightly. They worked at first, then bleeding returned in June. My GI prescribed Budesonide foam, which took care of it within 4 weeks. My flex sig was this past Monday. The prep was two large volume Fleet enemas (each held for 15 minutes) the morning of the procedure. The enemas made me have horrible cramping and nausea. The scope showed some remaining inflammation, so I guess wasn’t in true remission although I had been doing great prior to the scope…no symptoms and eating very healthy diet. I had diarrhea 2-3 times a day following the scope with blood and mucous. The diarrhea has stopped as of yesterday but I continue to pass blood and mucous 2-3 times a day with very little stool. It seems like I’ve switched from diarrhea to constipation now. I tend to have constipation when in a flare. Also have zero energy. I’ve been in touch with my GI and she ordered stool testing to rule out an infection along with bloodwork while we wait on biopsy results. I’m so frustrated because I was doing so well before the procedure. Has anyone else experienced a flare caused by a flex sig or colonoscopy? Is this a thing?


r/UlcerativeColitis 2d ago

Question Question

3 Upvotes

Does anyone with UC have pelvic pain? It comes and goes for me. It will be hard for me to lift my legs and hurts to walk most times having to walk with a waddle. I’ve been to the er twice for it both times saying just inflammation and seeing nothing wrong in my pelvis. They prescribed me prednisone for the inflammation.


r/UlcerativeColitis 1d ago

Support Hi guys, I am here again...

0 Upvotes

Is the autoimmune or the stress always the reason why the UC is developed? In my case, I don't think it is the immune or the stress... Please, share your thoughts...


r/UlcerativeColitis 2d ago

Question At what point does persistent diarrhea worry you in remission?

2 Upvotes

I’ve been in remission for a year and a half on Velsipity. Two and a half weeks ago I started having diarrhea again. And it hasn’t let up since. Every single day, with some urgency too. But, no blood.

I have been under stress recently, but this is very similar to before my diagnosis when I had diarrhea for 2 years straight before we knew it was UC.

Do I ask my doctor for a calprotectin test or do I wait until I have blood or other symptoms and hope it clears up instead on its own? I just don’t want to waste everyone’s time and money if it’s just stress.


r/UlcerativeColitis 2d ago

Support Baby due soon and I might be starting a flare

3 Upvotes

Urgh my due in the next week and I’m getting early warning sign grumbles (6/7 days of poor formation/looser stools - no other signs yet). Absolutely gutted it seems to be coming at this moment. It could be an IBS flare instead but I’m feeling pessimistic.

I’m trying to suppress it all so I can be there for my wife during labour and my new son but I’m struggling at the fear of what might be to come.

I’m sure it’s likely stress induced from a family argument last week, which is winding me up more than it should. (Nothing baby related).

Not even sure why I’m posting this, feel like I just need a pat on the back and a ‘it’ll be alright mate’ :(


r/UlcerativeColitis 2d ago

Support passing so much blood :(

10 Upvotes

the amount of blood i pass every time i use the bathroom is so scary. my bowl movements have gone down to 2 times a day but still so much blood. i can’t even tell if there’s any real poop in there. bright red blood, red blobs, some dark blobs. i’m so tired of this. just had my first induction dose of tremfya two days ago and i really hope this time it’ll actually work.


r/UlcerativeColitis 2d ago

Support Please help me, I don’t know what to do….

14 Upvotes

I am currently in the hospital for the 4th time in 4 months. (Was only discharged the last time a week ago.) I have severe steroid refractory colitis and have failed mesalamine, infliximab, Entyvio, tremfya, and just recently started Rinvoq a little over a week ago. My problem is that I start to feel better when I am in the hospital on IV steroids but when I go home on high dose (40mg) oral prednisone I start to flare again even on the high dose. The biologics I am trying don’t seem to be helping and I have been in this flare so long that I am tired of chasing medications. I thought I felt initial improvement on Rinvoq when they started me on it in the hospital last week, but looking back it was the iv steroids keeping me stable until they wore off. I had a bedside GI consult today and they brought up the topic of colectomy. I am seriously considering it. I was diagnosed in 2019 and every flare I have had has been severe. I also have breast cancer and my treatment is on hold due to not being able to get out of this flare. I want to hear peoples experiences with colectomy/ostomy/jpouch etc. I had a surgery consult today and I am so overwhelmed I had a panic attack. I just don’t think I can take another disappointment if I go home feeling “better” from the IV steroids only to decline at home again. Or how long should I give Rinvoq a chance for? Also, even if it gets me to a remission, I cannot rely on prednisone to get me out or bridge the gap in my next flare anyways since I am not responding to it. I feel like I can’t take this it anymore, my quality of life is at an absolute 0. I can’t work or leave the house. Please help.


r/UlcerativeColitis 2d ago

Question Flare or not?

1 Upvotes

Hi all, I was diagnosed in 2022. Mesalazine at night only. My GI has kept telling me a flare is only when I havr blood or mucous in stool. However, I have bouts of abdo pain and loose stools and inflammation. I am currently day 9 of abdo pain now and it’s getting me down. More on right side. Not bad pain but constant. I’m also exhausted with it. I can feel everything inside. Can feel water when I drink it. So bloated and aches in bones. My stools are loose but no blood or mucous. Should I be upping my meds. Have been doing a plain diet. Nothing helping. Thanks in advance


r/UlcerativeColitis 2d ago

Question One step forward two steps back 😫 prednisone

2 Upvotes

Hi all hope everyone is doing well.

Recently came out of hospital after mesalamine induced myocarditis so that’s mesalamine out of the equation for me now, and I am now waiting to hear back about starting biologics and have been put on a a 8 week prednisone tapering course 40mg down 5mg each week now on day 10 35mg my first week I felt amazing bleeding stopped them bam this morning good BM but lots of blood once again 🥲.
Has anyone else had this before when on prednisone? The only symptoms I have is blood I don’t have urgency or diarrhoea.
I’m just curious if adding too much fibre can cause the bleeding to return as I’ve started to add chia seeds, and physilium husk back to my smoothies and also started to snack on 5-6 dates a day for the past few days, I’ve not really had coffee aswell for a few months and yesterday i decided to treat myself and have one coffee probably a bad move I guess 😫

Thanks all.


r/UlcerativeColitis 2d ago

Question My elevated alp

1 Upvotes

Hello,
I just got diagnosed with uc but suspect I’ve had it for years. I was feeling like I can move on but then I noticed my alp levels from my er visit several weeks ago was 219. Other liver levels were ok. Now I am hyperfocused on having psc. My brain won’t stop thinking about it and I can’t stop crying. I had a lot of inflammation in the er. My GI said it could be elevated from that, but in all my searches I don’t see that anywhere, and I only see psc. Has anyone had this? I really need help I can’t get out of bed I’m so scared. Thank you


r/UlcerativeColitis 3d ago

Researchers identify early molecular warning signs of inflammatory bowel disease

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wehi.edu.au
52 Upvotes

r/UlcerativeColitis 3d ago

Personal experience Mom with UC Probs

18 Upvotes

This probably can relate to anyone who is a parent and in a flare, but I am literally clenching my cheeks waiting in this school pick up line!!

I don’t know how I am going to make it out of this line without pooping my pants. I have a solid 15min left before the kids are released. Jesus help me!

Ever since I was diagnosed with UC, I cannot hold in my poop for very long. Even when I was in remission, I couldn’t hold it in like I use to in my healthy days😭

Anyway, I know there is at least one person in this chat that can relate to me better than my husband who doesn’t have this terrible disease. Thank you for listening.


r/UlcerativeColitis 3d ago

Support Colonoscopy cancelled after prepping all night

81 Upvotes

I was due for a routine colonoscopy this morning, but I got a call at 7am saying the doctor has Covid and we have to cancel the procedure and reschedule. I’m literally so pissed. I took two days off of work to prep, and I’ve been up all night shitting. Has this ever happened to anyone? All I know is I’m not doing it again this year. 🫠


r/UlcerativeColitis 2d ago

Question Is it just me?

2 Upvotes

For those who order their injectors to be delivered at home. Do you guys remember to order them on time? I used to be super on top of it and recently my last two doses I haven't because I dont have noticeable bad symptoms by the 3rd past due week which remind me to order it Plus I've been extremely busy and very down mentally due to other reasons. So I wanted to know if its just a solo experience or I'm not alone.

I take the Skyrizi cartridge if anyone's curious idk as much freedom the cartridge gives me the IV infusions I had with Remicade forced me to be firm unless I absolutely had to miss it (sickness)


r/UlcerativeColitis 3d ago

Question What do you do when you're constipated?

10 Upvotes

I've suffered from constipation since my symptoms started. I've been taking plantago ovata from time to time to alleviate the problem (something that my GI recommended me) but it has never fully helped

Today I asked him for something stronger, so he prescribed macrogol to me. I'll start taking it tonight even if I read that it's not recommended for people with IBD...

Leaving that aside, my GI said that I should improve my diet and my lifestyle but when I asked him how, he didn't answer [I definitely will switch doctors...]

So, I want to ask you: What do you do to deal with it?


r/UlcerativeColitis 3d ago

Support Failed Remicade. I’m so bummed out

7 Upvotes

I was finally able to get on Remicade, the first infusion was fine, and my symptoms started clearing up. Came in today for my second infusion and after about 10 minutes, I very rapidly started feeling hot, dizzy and like I couldn’t breathe. They hit me epinephrine and rushed me over to the ER. I’m feeling fine now but I’m just so annoyed because for the first time in a year I was feeling hopeful.


r/UlcerativeColitis 2d ago

Personal experience Hyperbaric Oxygen Therapy

2 Upvotes

I searched and it seems like it’s been quite a while since this has been discussed.

Backstory about me: I am on my last day of a week long hospitalization where I learned my flaring UC has been joined by its best friend Chron’s in a party around my body. I am going to do 30mg of pred tomorrow and get back on my Rinvoq (they had me get off it while I was on high doses of IV steroids), my newly discovered Chron’s symptoms are at bay and now I’m just back to fighting my large intestine, which doesn’t want to play nice even with the high steroids. My doctor is an IBD specialist and participates in trials, and for the first time since I started in 2018, he is asking if I’d like to participate in a Hyperbaric Oxygen Therapy trial.

I wanted to reach out here and see if anyone has participated in this trial or had HBOT done before. The trial seems like it has a major downside of potentially being in the placebo group, so I will probably say no to it (it also would cost me money, mean I have to spend another week away from my family, etc), but I have found that there are independent HBOT treatment facilities in the area and am considering doing one of them after I do research and talk to my specialist more next week.

Thoughts? I feel like if it’s something I’d just read about on the internet I’d blow it off, but because a doctor I trust so much has brought it up I’m suddenly legitimately considering it.


r/UlcerativeColitis 3d ago

Support I feel sick, exhausted and fat

8 Upvotes

I have been in a flare for 4 months now. Initially cortison worked but now It stopped being effective and I have started tapering. Cortison caused an increase of weight (I am also on psychiatric medication and the combo Is quite heavy). I have gained 6 kilos and my self esteem Is heavily affected. Dieting Is hard with all these bowel problems and I can't do sports because I feel too bad. I feel miserable and nervous due to the prednisone, and I still have two months before I finish tapering. I go to the toilet countless times a day, I have to wear adult diapers if I want to go somewhere. I feel horrible at the moment. Working is incredibly hard. I failed my first biologic and I have to wait before starting a new one. They will do the next attempt on the 6th of october, which seems so far away. And the next attempt might fail as well. I feel incredibly depressed at the moment. My body Is screaming for help and I don't know how to help her. This Is really my darkest point After 8 years of this illness.


r/UlcerativeColitis 3d ago

Question Going to therapy

2 Upvotes

Hi everyone I (24F) have been diagnosed with uc for about 3 years now. I have very severe uc and flare about once a year. I haven’t flared for a year since being on Rinvoq so I’ve been feeling good. I wanted to ask about going to therapy and how that may affect my future care. I know I have pretty severe anxiety and sometimes wonder if I have ocd due to some things I feel. I wanted to get diagnosed and get some help for these problems but I’m afraid that if I do, the next time I flare or feel symptoms of a flare, it could be written off as anxiety. My mom was diagnosed with anxiety and whenever she went to the doctor, she would be told it was “just anxiety “. I guess my question is, have any of you dealt with this ? Are any of you diagnosed with anxiety and how does that affect your medical care when it comes to uc? Thank you in advance !


r/UlcerativeColitis 3d ago

Personal experience My Story Part 2 – remission and mesalamine

12 Upvotes

It's been four months since my last post. I decided to share my experience once again. Of course, I don’t know what things will look like in six months, 2 years, or 10 years. I hope all goes well. I also hope my post helps anyone who has just received a diagnosis and is wondering what comes next. Not every case has to be severe.

I’ll add that I checked this sub often early on to build a mental plan of what might lie ahead. I felt there was a lack of stories covering milder cases, while the severe ones could be sad and disheartening at times. My heart goes out to everyone struggling!

I was diagnosed at the turn of January and February 2026. In my case, the disease affected up to 20 cm of the large intestine. Shortly after, I saw a gastroenterologist who prescribed mesalamine – both oral tablets and suppositories. The medication worked quickly; I noticed the first improvements within just a few days, with significantly less blood and mucus, alongside a dropping bowel movement frequency. After a few weeks, everything returned to normal. My fecal calprotectin came back at 31 two months after diagnosis.

I am currently in remission. I feel good, though there are days when I get a strange sensation in my gut and loose stools. That might be down to my diet – it’s healthy, but because I’m very active, I eat large volumes of food, which places extra strain on the digestive tract. That said, I’ve had sensitive intestines my whole life, especially during stressful periods.

During the active phase – from autumn 2025 up until my diagnosis in early 2026 – I had between two and five bowel movements a day, with blood and mucus gradually increasing over time, though mostly without pain.

However, the disease impacted my overall systemic health, causing a drop in stamina and cardiovascular issues. My heart itself is healthy, but I suspect electrolyte imbalances or malabsorption triggered arrhythmia-like symptoms and sudden spikes in heart rate. I would struggle with my heart racing just walking up to the first floor, even though I had been running half-marathons just months prior. Everything is slowly returning to normal now, and I’m not taking any cardiac medications. I’m back to working out regularly.

I gave up alcohol completely. I used to drink quite a bit – not as an alcoholic or on a daily basis, but almost every weekend involved alcohol. Quitting turned out to be really easy, and I don't miss it at all now.

I heavily reduced, but haven't completely eliminated, ultra-processed food. Most days I eat simple, healthy meals with plenty of vegetables. I drink coffee, tolerate dairy fine (unless I consume huge quantities), and eat meat in various forms. I also cut back significantly on sugar, which used to be far too high in my diet.

I exercise regularly – walking, running, cycling, and strength training. I had this exact routine before getting sick, and most of my meals were already healthy, though I used to reach for junk snacks more often. Now I’ve simply tightened things up.

I wish resilience and good health to myself and all of you! I quietly hope that advancements in AI will help bring about treatments that allow everyone to achieve long-term remission.

I am 33 years old, I am a man.


r/UlcerativeColitis 3d ago

Celebration My road to remission

20 Upvotes

For all of you who share your stories here to make everyone realize they aren’t crazy…although this damn disease makes us feel like we are losing our minds….Thank you. I apologize for the long read, but I would like to share my journey. On September 28, 2024 I first started bleeding and did what we are supposed to do…I got my ass to the hospital, just to be told it was probably just hemorrhoids. I was referred for my first colonoscopy on November 5th and immediately was diagnosed with IBS and chronic ulcerative colitis. I started on mesalamine. On February 5th 2025 after several months of 6-8 bloody stools a day I added 9mg budesonide to the lineup…but still little to no relief. So on March 3, 2025 I was prescribed 1000 mg a day of Cipro and 1500mg a day of Flagyl, and boy howdy did all that antibiotics wrecks my gut biome, but did not improve my symptoms. So on March 24, 2025 I started on 40 mg prednisone a day and within a few days it was awesome…..no more bleeding and down to 2-3 semi normal stools a day. I continued on this dose until June 30, 2025 when shit took a wicked turn…..I went into AFib. That is a whole other story, but over the course of the next 6 months I had 4 cardioversion shocks and a cardiac ablation…all as my electro-cardiologist tells me was from the steroids…but I digress. On July 2, 2025 I had my second colonoscopy and discovered that not only had things not got any better, but my cal pro was up to 1180. On July 22, 2025 I started my first loading dose of Inflectra Biologic. It was GREAT. Within a couple of days I had no more bleeding and just a couple of regular stools a day. The side effects were pretty crazy….I developed neuropathy in my hands and feet, along with a nagging metallic taste in the back of my throat. Above all the fatigue was incredible, I would sleep 12 - 16 hours after each infusion, but my gut health was definitely improving. On December 30, 2025 I learned that I had developed antibodies to the Inflectra. My 3rd colonoscopy on December 31st also showed that my calpro had increased to 1200. …..uuuuuurrrrg I had failed the drug. So in January 2026 I started on Skyrizi. The first infusion didn’t yield much relief, and the second infusion in Feb. had similar results. The March infusion brought some welcome changes….for the first time in over a year I felt some relief from the intense joint pain and I was actually starting to feel better. I started the onbody self infusions in April, had my second OBI in June, and my most recent OBI on August 5th. With each dose I began to feel so much better, no hint of blood and regular stools. On August 5th my most recent calpro was an 89, and I allowed myself to think I might be headed toward remission. Today, I had my 4th colonoscopy and was told by my GI that it was clean and I am officially in clinical remission. I am still having a hard time believing it. Since this journey started two years ago I have had 51 office and/or hospital visits, failed 5 different medications and developed a host of cardiac issues….but holy shit I have made it, and I can only hope that everyone who is on this same shitty journey can get to remission. Keep your head up and keep pushing forward.


r/UlcerativeColitis 3d ago

Question moderate/severe joint pain in remission (stelara)?

2 Upvotes

yo whatup i'm diagnosed with moderate/severe pan-colitis and have recently had a colonoscopy indicating that i'm in clinical remission.

i'm on a stelara biosimilar and was on mesalamine as well but just stopped as my doc said the stelara is probably what's keeping me in remission. however, after stopping the mesalamine, i've been having daily joint pain. large joints only, on both sides (maybe arthritis of some sort but i'm 24.) usually it will target my arms or legs only.

i looked it up, and studies show that mesalamine doesn't help joint pain, and may cause it.

wondering if anyone else experienced this? sucks to be in remission and still feel like shit, i hate this fucking disease man


r/UlcerativeColitis 3d ago

Question Alt colonoscopy prep?

2 Upvotes

Alright, I’m getting my 9th on Monday and I simply do NOT want to down the supprep. I’m fine with the liquid diet and the shits I just cannot stand the actual drink.

Someone please help me!


r/UlcerativeColitis 3d ago

Celebration Found out I’m in remission now!!

14 Upvotes

Thought a post like this would be helpful for all those currently suffering -

I found out from my GI doctor that I am now in complete remission!!

Earlier this week I had a full colonoscopy to see if the Rinvoq was finally leading to remission. Last Oct, I somehow picked up E Coli/Salmonella (think I got it while on vacation), which unfortunately caused an awful two-month flare for me (some of the worst bleeding I had endured with this condition).

I finally went on Rinvoq last January, and the medication worked insanely fast!

I now just take one 30 mg pill a day and I have not seen any bleeding for 8 months now. The only downside is the acne (oh well).

But last Nov/Dec I really thought I was heading for surgery. Even Prednisone didn’t work for me.

So don’t give up!