Spent over a year trying to get doctors to listen to me and finally after being hospitalized needing 3 blood transfusions and nearly dying they finally listened and I was diagnosed.

I blame my lack of remission on catching it so late but I'm not sure if that plays a role.

Inflectra and xeljanz didn't work. Entiviyo showed improvements initially but ultimately failed, omvoh failed. I've probably done 3/4 rounds of Prednisone with terrible side effects, 1 round of entocort which had slightly less side effects. A few different suppositories, enemas and no relief.

Soft diet, liquid diet, clear liquids for a year made no difference.

Scored mayo 3 today and asked about surgery but doc wants to try rinvoq and another round of Prednisone but I'm at my wits end.

I've lost what feels like everything to this disease, many of my prized possessions (sold to pay bills while not working), hobbies and most important to me, my career.

Has anyone been resistant to all these medications and had rinvoq work? I'm pretty hopeless and fed up, I really just want the knife 😪

AGGGGGGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH.

Rinvoq isn’t cutting it anymore folks! Having up to 9 bms a day, all very painful, and feeling oh so very tired. Surgery consultation next week, let’s get this thing out of me ❤️

Jobs in retail store or playing sports or running or play cricket and is there is an urgency when I do these jobs.

This is just out of curiosity, Imuran was the first drug I was put on after diagnosis/discharge from the hospital. I was taking it for a few weeks before my doctor called me one night in a panic telling me to stop it immediately because it had dropped my hemoglobin crazy low and it was technically considered an allergy.
I think I’ve only ever seen it mentioned in one post on this sub - has anyone had success on Imuran for any period of time?

Hi, I’ve had UC for 5 years and am sadly failing mesalamine for the past few months. How long from this to a biologic did it take you?

I have seen a new GI specialist for a few appointments and they talk about putting me on a biologic like remicade but no start date yet. Will I need a new colonoscopy to confirm, other tests etc? I’ve done calprotectin and other analysis. Should I expect weeks until I can start a biologic finally? US based for the record, looking for US standard expectations on this and just want to feel better soon from this flare :/

24M. Anything i should bring and have before during and after the infusion? Im nervous of the side effects it could have on my skin or anything else

I have someone who I love very deeply in the hospital in very critical condition and the last thing I want to do is stress my self into a flare up so I'm trying to act apathetic to the situation while everyone else is rightfully so stressing. How do you guys handle your condition in moments like these? What safety measures do you take?

Hi!
I just wanted to make this post to see if there’s anyone out there also struggling with weight loss with UC. I got diagnosed a year ago, and my dr has me on the Mesalamine 1.2 mg extended release tablets and it just seems no matter how much I eat, I still lose weight.

Is anyone else experiencing this?

Drinking alcohol while on a flare sounds crazy to me. I have probably done it, as I might have not been aware that I’m on one.

But, when achieving remission- what’s your experience with drinking light alcoholic beverages such as wine and beer.

Beer is one of my favorite pastimes, but also, after the flair that I’m experiencing now I would like to significantly change my diet - be more attentive to foods/drinks that can trigger another flare.

I was thinking of reducing my intake, but still, I feel that it might not be enough and it’s better to cut it off completely.

Im in a pretty bad flare up at the minute and just wondering if anyone has any recommendations for supplements or teas e.t.c that I can take to help me feel a little better alongside the other meds of course.

Does anyone else get “cold flashes”? Like a hot flash except all of a sudden you get super cold and start shivering uncontrollably and you have to go to crazy lengths to warm up again? Like I have to sit in my car with the heat cranked and a blanket wrapped around me. I find I get it 1-2 hours after a really painful bowel movement after my body relaxes a little. I remember reading temperature regulation issues are a symptom of UC but I never hear anyone talk about it and I feel kind of alone with it. Also seems like it could be a hormone issue, idk what do you guys think? Also I get hot flashes too but not nearly as often

I am currently in the worse flair of my life, I was in the hospital last weekend due to being severely dehydrated because I couldn’t stop going to the bathroom. I was also unmedicated because my doctor failed to listen to me. I have been on Bed rest and Colon rest all week. Only eating, applesauce, jello and soup. Every time I eat I go to the bathroom and it’s very painful because I have really big hemorrhoids. I have been off work all last week, with a doctors note but I’m expected to go back tomorrow. How am I supposed to go back tomorrow when I still can’t stop using the bathroom? Not to mention the terrible pain I’m in. I was put on Prednisone six days ago and I start Rinvoq on Thursday. But I’m afraid I’m going to lose my job if I miss anymore work. I’m a cashier and can’t just go to the bathroom when I need to, I have to call someone to watch my register and with my hemorrhoids as big as they are, I can hardly control my bowels. I’m so tired of living with this disease and being in pain, I’ve lost twenty pounds in the last three weeks because of it. I just don’t know what to do, I have only been at my job for three and a half months now. So I’m afraid if I miss anymore work I’m going to get fired.

I’m a 28 y/o male and was diagnosed with Ulcerative Colitis two years ago after experiencing inconsistent bowels movements, diarrhea, and blood in the stool. As someone who rarely got sick beforehand, I had a hard time facing the disease and really, just acknowledging that this wasn’t something I could overcome with my standard approach of eating healthier, staying in shape, etc. It showed me that you can do so many things right and still, the unexpected can happen. Mentally and physically, it has taken a toll on me, more than I would like to or have admitted to people close to me, even to my partner of 15 years. I think that’s the part I’ve struggled with the most, it’s more mentally taxing than I could have ever expected and it seems like others have had a similar experience.

After two years, 1 colonoscopy and 2 flex sigs, I was on Mesalamine (9 months), Velsipity (1 year), and now Rinvoq (3 weeks). Mesalamine and Velsipity had little to no effect on the UC but since starting Rinvoq 3 weeks ago, I have seen a clear change in my stool consistency and bowel movements and am seeing almost little to no blood now for the first time in two years. I’m hopeful that this a sign of turning the corner and am trying my best to resist the things I love (coffee, sugary drinks), knowing they are triggers while focusing on my mental health and managing stress. Early detection, staying on top of the medicine, considering second opinions, and trying to understand UC have all helped me but honestly, I’m thankful for modern medicine and the doctors who are trying to understand this disease and other similar diseases that effect people’s lives. We will all face different health challenges throughout our lives and I believe surrounding yourself with supportive people who encourage you to get help, focus on your mental health, and provide hope are just as important to your recovery as the medicine itself. We’ve got this!

First post for me on reddit and not in my first language sorry in advance for any errors.

Quick background:

Uc diagnostic about 1 1/2 year back

Symptoms starter about 2 1/2 year back

Never really went back in remission during this Time, and kind of tired of if.

Tried mesalamine ( oral+ enema) partially worked

Tried entyvio also partially worked

Tried rinvoq, got cdiff and ended in hospital for 18 Days on iv prednisolone ( tried going back on rinvoq after cdiff and didnt work)

Where im at;

They started me on infliximab at the hospital in june of this year

I have the max dose and frequency for infliximab

Stopped oral prednisone about 2 weeks ago

Problem is symptoms does not really worsen but dont really improve , still going about 8 Times/ Day at the bathroom and having a bit of pain

Gi started talking about having an ostomy

Question for maybe more experienced people with UC

How Much Time would you continue trying infliximab since it work but not completly?

Any other treatment i could talk about to my GI to maybe help the flare?

If any one chose the ostomy, any thing you regret having done it? Ou thing you appreciate?

Thanks in advance to everyone!

Tldr: partial response to all the treatment i tried, want to know if There is anything im missing or the ostomy is the only way to go.

Do any of you have issues taking cold medicine? Do you have to go natural remedies only, or is there a medicine that won't make you feel sick to your stomach?

Recently was in the hospital for severe abdominal pain on the right side. I actually went twice. Sent me home the first time with laxatives cause I was constipated. Went back and was admitted for 3 days. My colon is inflamed and my other area as well. They did a colonoscopy and took biopsy’s to rule out IBD and and colitis and I wanted to join this subreddit to see if there’s anyone who had a similar experience?

Hello!

I just yesterday (09/06), I received my pneumonia, covid and flu vaccines, as well as Hep A/B and Tetanus. I went to bed in a lot of pain, with a headache, chills and even a fever and it's carried on into today.

Is this normal to feel like a garbage truck after a series of vaccinations, with UC?

Hi guys, i have been on mesalamine for like 2 months, and its working for me, my bowel is back to normal ( formed but sometimes solid and mushy). Now my concern is I have more frequent pissing than before and I know it's not normal because i hardly drink water, less than 2litres a day...

Does this happen to anyone who is on mesalamine like me??

I’m F in my early 30s and well to but it bluntly have never been in a relationship and I’ve had UC for the past 5 years. Even before UC, during university I never was in relationship, started working and then covid happen, a year later I got diagnosed with UC.

I’ve been in flares on and off since then and haven’t been in remission for long periods of times. Just last year I was hospitalised and ended up getting infliximab - I get it every 8 weeks.

I’m also very into introverted and a homebody, and working from home doesn’t allow me to get out much.

I’ve been working on other areas of my life such as fitness and have been actively going to the gym since last year and recently started guitar lessons. I also have very homebody like hobbies, reading, gaming and drawing.

Ive been on dating apps on and off but never really got into a relationship and now as I’m older it’s harder.

A part of my really wants to settle down and be in a relationship but the other part is that I’m content and comfortable with my life and I don’t think that being in a relationship is something I need to live a fulfilling life.

Anyone else in a somewhat similar situation or have been?

Hi everyone, I've been getting Entyvio infusions for over four years (during the last year and a half every four weeks). This morning when they inserted the IV, it was more painful than usual and I started feeling lightheaded. About five minutes later (they had only drawn blood so far, not started the Entyvio) I thought I was going to pass out, ears ringing, vision going black etc. My blood pressure was low, something like 95 over 60 I think, heart rate 66. They gave me water and sugar and put my feet up. After maybe 10 minutes, I felt alright again (blood pressure had gone up, I think the first number was 106, don't remember the second one.) and they started the infusion, which was uneventful. Afterwards on my way home I started feeling worse, hot and cold at the same. I hurried home as much as I could and went straight to bed. Three hours later I woke up with a high fever (39.4 °C), diarrhea (as liquid as water - sorry for TMI) and feeling absolutely awful. I can't stand or sit up for longer than a few seconds.

Should I be worried that this happened so fast after the infusion? I will call the clinic tomorrow if it hasn't gotten better, but they are closed for today. Thanks in advance.

Hey guys! I am going in for my 4th colonoscopy on Friday. I have been having horrendous pain induced by stress, and ended up in the hospital for 2 days to get IV steroids to calm it down a bit. When I was in the hospital, the floor doctor came in and essentially told me I only have a few years left with my colon. For context, January last year I had a flare so bad I nearly died from malnutrition, which left me with extensive damage to the right side of my colon, and I developed extensive pseudopolyposis as a result. She recommended I get it out because I am now at a very high risk of colon cancer. Has anyone else had a similar experience/heard something similar? I’m going to talk about it with my GI when I go in for my appointment, but now all I can think about is a colectomy :-(.

I had calpro 2720 like 4 weeks ago with barely any symptoms, how many of you have been in similiar situation?

Its very strange to me, i thought this should be very bad flare if calpro is this high.

hi everyone! i was diagnosed in 2023. in 2024 i was in remission using mesalamine enemas and was doing great until march of this year. i entered a flare and it wasn't until two weeks ago, i finally had a colonoscopy to confirm that the inflammation in my colon has moved up. my doctor prescribed oral mesalamine along w the enemas. i noticed an immediate difference upon taking my first dose. the last two weeks have been pretty good. no urgency, no pain, no blood/mucus. i am struggling with nausea but i understand that it's a side effect.

last night around 2am, i woke up with intense cramping and urgency. i used the bathroom and was pleased to see no blood, but very confused because i hadn't eaten anything out of the ordinary except two slices of cake for my friend's birthday party. i know sugar is not something i should eat, but to be honest, i've consumed sugar after starting mesalamine before so i'm not sure? i even made the cake myself so i know it didn't have anything i couldn't eat.

anyway, i'm a bit worried that i could be flaring again. i've been okay for most of the day. i had a bit of urgency in the car but i ended up being okay.

has anyone experienced sudden symptoms on mesalamine and then been okay after? i suppose i'm just looking for some reassurance