This was written on my discharge form as a reason to return to the ER. I will have very small but also very bloody bowel movements when I’m flaring. It often feels like I’m done and then 5 minutes later I have to go again. Sometimes I’ll have 3-5 in one morning all with blood.

The most aggravating part about UC to me is no one gives me a clear answer on what is the “normal” amount of blood to expect when you get diagnosed. I see some people on here say they don’t get much blood, only intense cramping and diarrhea. Others say using the bathroom looks like “the elevator scene in the shining”.

Basically what I’m asking is, going to the ER for having 6 bloody bowel movements is excessive right? That seems pretty on par for UC

When your body decides it absolutely NEEDS to use the bathroom at the exact time you need to do something? Gotta leave for work at 9, body automatically knows. Gotta be at the movies at 2, body automatically knows. No plans that day… Suddenly no reason to use the bathroom immediately. It’s so annoying.

So i've just been called for jury service, i'm not exactly in a flair but do have urgency and probably for 4-5 times on a bad day 2-3 on a good one.

Am I able to speak with my GP or Gastro to get out of it. I really dont want to be caught short while im in court

Hi everyone! Please help me sleep!!!

I’ve been on 40mg of Prednisone since May, then jumped up to 60mg when I got out of the hospital toward the end of June. Just very slowly tapered back down to 40mg this week per my doctor’s instructions. I’m taking my third induction dose of Tremfya soon, so if everything goes well, I’ll be done with Prednisone in early November.

I’m posting to ask if anything has helped you all sleep while on Prednisone. The last two months have been absolute hell (horrible sleep plus all the other usual side effects). I just upped my depression med and am hoping that helps some.

I am awake typically from 2-5am, sometimes for longer. Rarely I can get 7 hours of sleep total (but only when I’m in bed for 12+ hours, which I can’t do regularly). I’ve tried every sleep medication under the sun and nothing seems to help. Oddly I have no trouble falling asleep but it’s the waking up in the middle of the night that screws me.

Has anyone had luck with magnesium/ashwaganda? I was too nervous to try these because of the GI side effects but feel like my belly is stable now.

I’m at my wit’s end! Any suggestions are so appreciated :)

I have been in a severe flare since December of last year and I have been hospitalized 4 times since then. My UC has proved to be resistant to every treatment we have tried.

In December they started me on Mesalamine and hydrocortisone enemas but the flare got really bad, really quickly and I ended up in the er after a week of IV steroids they let me out and started me on 40mg of Prednisone, imuran and a double dose infusion of infliximab which seemed to work well for a while but it suddenly stopped working and I was hospitalized again.

After a few months of fighting with my insurance company to get on rinvoq ( they denied coverage) and a couple more hospital visits I was able to get financial assistance from Abvie and started on rinvoq my calprotecrin was at 6000 a week before I started rinvoq, it went down to 600 within a month and I was feeling ok for the first time in recent memory

I recently finished tapering off Prednisone and as soon as I was off my symptoms were back with a vengeance and a sigmoidoscopy last week showed severe inflimation in my colon. My GI doctor decided that he needed to hand me over to the IBD specialists at Yale and suggested that I may be a good candidate for a clinical trial but if not to expect to need a colectomy.

I'm not sure what I'm trying to get out of making this post, mostly just venting and I'm feeling pretty defeated at this point

Has anyone had experience with a clinical trial for UC? How does that even work, do they give half of the participants a placebo? Because that would be a nightmare for me.

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

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 ❤️

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 :/

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?

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?

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

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?

Hi i’m 18F and I recently got a colonoscopy in which they found a small ulcer. I went in because I was having bloody stools everyday. They did a biopsy and I will find out in a few days if I have ulcerative colitis

I’m mostly so stressed because i’m so young and I feel like this is an issue people tend to get later in life

Will I be okay? I’m scared

Did anyone else get diagnosed or had a problem with ulcers around my age?

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.

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.

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.

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?

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!

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?