Hey

I have been on Rinvoq for a year and have been symptom free and feeling amazing finally. I came down with a flu about 3 weeks ago and with the flu came a slight flare. Nurses told me to stop taking Rinvoq until I finished a round of anti biotics. I finished the antibiotics 2 days ago and starting Rinvoq again straight away as my flare was worsening. I am now on Rinvoq (30mg) again two days and have not felt an improvement.

Has anyone been through anything similar and came out the other side with their flare gone and medication working as normal again? Also has a flu/cold/covid led to a flare for any of you before?

Thanks

I was in a bad flair … visiting washroom like 15+ times, my GI prescribed prednisone 40mg which I started taking on Thursday and today I am constipate. Am I doing something wrong or this happens ?

TIA

Someone I know with UC started an acupuncture treatment of two weeks. The doctor assured them that the UC will be cured (he gave the example of his own daughter and how he was able to cure her UC with acupuncture). It’s worth a shot, i hope it works out. Has anyone else tried acupuncture for their uc and how has it helped (if it has)?

I'm anemic but can't take iron tabs or liquids. Has anyone tried patches you put on the skin?

Anyone else get super sick when they eat tomatoes with uc? or is it just a trigger for me?

So im 17, first had symptoms of UC when i was 16 (sep of last year) and got diagnosed in april of this year, in that time i had my first major flair up in june and spend a little over a week in the hospital, i was on masalasine which has recently become inefective dispite having my dosage increased to 4g (was 2g). I came into hospital on hallaween with the worst pain i have ever felt, it hurt to eat, drink, i was throwing up blood, constanly going the toilet, with you guessed it, blood. Everyone in my family is telling me to be possotive but i cant help but not. Ive started another round of IV steroids which helped me the first time back in june but i dont want to be going through this pain every 4-5 months even if it is only for a few weeks. My biggest fear is by far having the colon bag ( not too sure what its offical name is(ive also overheard the drs/nuses mention how my large intestine has become more inflamed over recent weeks and thats why im more parranoid about the colon bag) ) mainly because i dont want people to judge/view me as different. Ive tried weed for the pain (smoking and edibles) but i dont really like the high feeling. I just want the pain to stop. Any help would be greatly approciated. (i know im making out like this is the end of the world, but thats what it seems like to me) sorry if this all comes off as offensive thats not my intent, just never really have experianced fear until my UC

Asking this as I’ve seen a couple of posts saying working out causes flare ups in ulcerative colitis .

I’m on my third week of prednisolone and started tapering but my symptoms are coming back. Nothing bad compared to the side effects of the pred but not as good as I was earlier in the treatment.

What have people’s experiences been like in this situation? Has your doc stopped the tapering?

Really want off the steroids.

Lately I’ve had some delicious food but it makes my bowel hurt. My stomach is fine but my bowel has been killing me. I’m a huge foodie but because of UC and IBD I can’t eat everything I want, for example gluten and lactose. I usually eat small portions throughout the day but because I have been making really delicious food lately I have found myself going for seconds and my portions got bigger than usual. Because of this my bowel has been killing me I don’t think it’s gas but I do feel constipated.

Some foods I’ve been enjoying eating lately are potatoes and soup.

Does anyone else have this problem?

I have had fecal impactions before and have been able to successfully get rid of them, but this one feels different for me and I’m not sure if anybody else has this issue in UC and knows if I’m good for now or if I should be doing something different?

I recently had to go through tests over again to confirm I have UC, and was told to not restrict my diet, so I didn’t. It sent me into a flare up, and I had an x-ray done with results of “moderate to large stool burden” and was told to go on miralax.

I started miralax yesterday and have had passings, but it’s like the miralax just went straight through and took a little with it but not nearly everything if that makes sense? I also have noticed VERY loud stomach gurgling this morning for maybe three hours when I awoke, and it randomly happened throughout the day but it’s difficult to pass gas and of course I’m always nauseated. I ate a friendly meal and took my meds that I needed to take.

My question is if I am still going to the bathroom, even if it’s not getting anything out am I okay to keep taking the miralax as it’s just trying to work its way through? Or does this sound like the start of a bowel obstruction?

Hiiii guys, just wanted to know if French fries are safe for yall? I know everyone can tolerate different things but just wanted to get a general opinions, also if there are certain ways you should prepare them/certain brands you should buy/avoid, any help at all would be great, thankyou guys

Hi - Has anyone gotten into remission (or nearly) because of use of ozempic, wegovy or trulicity (any of the weekly GLP-1’s used primarily for weight loss and diabetes)?

There are increasing studies about GLP-1s’ anti-inflammatory effects and also a few retrospective cohort studies reasonably convincing showing a helpful effect for IBD. Sadly a randomized controlled trial will take quite a while, and I am not sure if any are ongoing.

They are not approved for IBD and I have not heard of doctors prescribing them off label so I suspect any experiences would be in individuals using them for obesity or diabetes (unless someone and their doctor have been bold).

As UC sufferers do you keep up with flu and Covid vaccines?

My 14 year old’s GI doctor had told us to make sure our son who has UC get his flu and food vaccinates when fall arrived. I had difficulty booking the appointment. He hasn’t had this year’s vaccines yet.

My son is in remission. He was on a camping trip last weekend and came home ill - slight fever and runny nose. Very mild symptoms and it went away in a day or so. I’m not sure if it was the flu or Covid. It couldn’t have been a cold because of the fever. I couldnt find any Covid tests.

Websites say wait 3-6 months to get vaccinated if you were infected.

Not sure if we sit this vaccine season out?

Oddly, I caught something this week - flu or Covid, can’t tell, and I’m worried he’s going to get sick from me. Or maybe he got me sick. I’m terrified he will have relapse if he gets sick.

How do you handle flu and covid season?

on and off since spring 2024, I’ve had a lot of gas buildup, like every time i go to the bathroom before i pass stool i’ll let out gas. in July, little pebbles of poop would come out whenever I’d pee. Then at the end of august i started losing blood through my poop. i told my doctor I wanted a colonoscopy but he says im too young (24F) and he was convinced probably hemorrhoids. it’s been two months and i have urges to run to the bathroom at 5am and then again at 8am every morning. I’m also loosing clumps of hair since September and have iron deficiency from the loss of blood. i’m really scared that it’s going to become more serious. but also, I don’t have pain but I’m more concerned about the worst possible outcomes (like having surgery). it feels so embarrassing to talk about as a girl and the only person who knows is my mom and she’s worried for me too.

I have been on mesalamine for 10 years and I have to take one burst of steroids per year for a fall flare. Do you think this is bad? I have one doctor telling me I shouldn’t have it at all and another saying that 1-2 times per year is fine.

I’d like to try probiotics but there are so many types and I don’t know where to start. What are y’all using?

Getting another big dose of infliximab as a last ditch attempt to pull me into remission. Five doses in a month. 5mg 5mg days a parent then two weeks later 5mg and ten days later 5mg. .. and now a week later th eh want to give me 10 before calling it a fail and trying rinvoq.

I’m scared of having rinvoq at same time as all these doses of inflix. The gi I spoke to is the head gi of a big hospital system in my country.

Has anyone done this combo?

I was tempted by the devil

Can someone explain to me why we freeze? I never did understand that. That down to the bone, bone chilling cold. You'd swear you were going to freeze to death if you moved an inch. 6 heavy blankets and an hour later still violently shaking. Somewhere during the night it levels out and then goes the other way waking up drenched in sweat. If anyone know why, could you let me know, please and thank you. Signed a frozen Canadian.

Edited to add, I've been battling this for 20 ish yrs. My GP, told me for yrs I was anemic. Even back when this started. She chuckled and told me to eat a hamburger. Told me it was just ibs and that we all go to the bathroom. I have friends who have colitis who have said, " are you sure it's not colitis? " ( always listen to those who speak on experience ) I was sent to the gastro doc who at first I had no issues with. That man was all about business, he wouldn't have bothered me. ( I have a history of abuse with men) until.... he showed me around and brought me to the room of a man who was waiting for his colonoscopy. This man was gowned, but I saw his entire backside. 🤦‍♀️ the doctor just looked at me and said, "See, there's nothing to it." I got out of there as fast as I could. I was 18. I didn't tell anyone what I saw. I was diagnosed this past spring. When I told this new doc my story, her eyes.... I've only seen that kind of mad from my father. But the being so friggen cold thing I never could figure out. But that makes sense. I know I was anemic. And my white cell count was through the roof. I remember that. One emerg doc told me he thought I'd had leukemia if I had any other symptoms. My gp told me sometimes peoples white count goes high for no reason. It just happens. I remember I couldn't stay awake for days during that time. I try not to think back, because all the signs for my now diagnosised issues couldn't have been more obvious 🤦‍♀️

My partner and i have been together for just over half a year. Initially, he was a bit shy to tell me what is going on, but soon, he started having more flare-ups. I was not aware of UC, but I dived into it to find out how to be there for him. Keeping his tummy partially full and a smile on his face when he takes a bite of the food I have prepared. I dont mind to prioritize his needs for certain foods over my preferences. It has been a time full of trial and error, and we are definitely not there, yet. I do, however, think i need some more insights from others in the following matters;

1. Will the feeling "shoot, you are in pain again!?! I am afraid i might have unknowingly poisoned you last night during dinner. My bad." EVER go away? I feel guilty almost every time.

2. My partner hesitates talking details with me. I dont need to get a full stool report (please no), but he tries not to address it, while i would actually like to know what is going on. Also being more understanding when it is hindering our intimacy. How would you do this as a partner from someone with UC? I would really like to make it clear to him that he should not be ashamed, nor am i repulsed.

3. What else can i do to support him?

I was on entyvio for over three months with no progress. Ended up getting c diff. Kicked that with vancomycin then we switched to Stelara. Got c diff again and took difficid and vowst. Now I’m on week 10 of Stelara with no signs of improvement. This has been a year long process so far and my GI wants to switch biologics. Should I give it more time or if I haven’t seen anything at this point is it unlikely? I know it can be a slow process but I’m loosing it here.

Who’s gone vegan? Did it help?

Like I want to eat eats things like eggs, fish & wat not I’m a HUGE protein guy & I’ve lost about 15lbs w/ in the last 3 weeks!! :/

EDIT: I guess I’m asking if you’ve change your diet @ all from before diagnosis to after diagnosis.

I apologize if my post was jumping around, didn’t mean for it to come off like that

Would greatly appreciate if anyone would share any names of a great adult gastro doc who specializes in Colitis for adults. I am looking for a second opinion either Westchester County or NYC. I have been told I have about 80 percent of my Colon is inflamed and I will need to start Remicade. Really looking for a great bedside manner and good diagnostician. Appreciate any referrals!

First flare of my life started in February 2022, got diagnosed with UC in April of 2022, got on mesalamine in April and it helped until like July that same year, prednisone pulled me out of that flare and I was great until February of 2023, had another flare and needed 3 units of blood transfusions, stubbornly stayed on mesalamine but also incoporated some lifestyle changes to better manage my stress and sleep, did great until November 2023, only needed 2 units of blood transfusions that time, got started on Zeposia (plus continued lifestyle changes) but took a long time for insurance to go through due to having to change insurance from 2023 to 2024, finally got on Zeposia in March of 2024, a few side effects early on (brain fog, weird fluctuations in heart rate, but that went away pretty quickly), heading into November now and currently setting a new personal record every day for most consecutive days without UC symptoms since being diagnosed.

There may come a time when I need to move on to a new medication, but I am happy with how things are going. I have my life back. There is hope! Good luck out there everyone :)

Stelara and Entyvio didn't work. I'm now starting a Remicade infusion. Has anyone been in a similar situation? Did Remicade work?

I don't really have any other treatment options because of my other illnesses, so if Remicade doesn't work, my only left option will be colectomy. I'm currently in a flare (Mayo 2) and I'm so tired that I think if Remicade doesn't work, a stoma wouldn't be a bad choice.

Surprised this hasn’t been posted here. Or maybe it has?

SUMMERY:

Tulisokibart is a tumor necrosis factor-like cytokine 1A (TL1A) monoclonal antibody in development for the treatment of moderately to severely active ulcerative colitis. A genetic-based diagnostic test was designed to identify patients with an increased likelihood of response.

LINK: https://pubmed.ncbi.nlm.nih.gov/39321363/

I have read about people who went into remission for 20 years with mesalazine. Is there anything better?

Hi all had my colonoscopy today and although they said there’s a lot of inflammation and mucus wondering if someone could help dumb down the findings section of my report for me please. Unsure what a load of these words mean

I got diagnosed with ulcerative colitis about 2 months ago. I have been in a pretty bad flair since. For the last month I've been struggling to eat. We're talking a few bites of toast or oatmeal in the morning, sips of water and some juice through the day and a few sips of chicken stock for dinner. It's probably way under 500 calories a day. My stomachs feels so bloated and cramped I can't get anything else down.

My doctor's have me on a treatment plan but until this kicks in I want to get my strength up but don't know how. Does anyone have any advice for getting your appetite back and keeping food down?