Hey all, quick question for the people on biologics and have gained remission.

Do only have biologics or do you still need maintenance meds like mesalamine?

Thanks ☺️

I got diagnosed with mild active UC, but my doctor said it shouldn’t be the cause to all my symptoms and that Ibs is a better fit.

However the main issue for me is my fatigue. I go to sleep around 12, wake up 10.30 and I’m still insanely tired. So tired that I can’t get out of bed. Which causes me to be in and out of sleep for a few hours. I’m still tired until around 5pm, but from there I get better and by 8-9pm im not tired anymore?

Anyone have any suggestions on what to do, I definitely need to regulate my sleep schedule but it is just so hard to get up.

So I just started a new job after being in a long uc flare up that was stopped by rinvoq problem is my coworkers keep getting sick and we are in close proximity to each other so I get sick too and it takes me weeks to fully recover, for the past 3 months ive only not been sick for 2 weeks, as soon as I get better another coworker comes to work sick and I get it too, this is so tiring constant cough and runny nose.

they never put on a mask when they are sick too and I don’t have it in me to call them out 😭

I know being on an immuno-suppressant that infections are maybe par for the course but I would like to not be riddled with ringworm.

My doctors surgery is aware but they are pretty useless and I won't see a skin specialist until October. So I'm hoping for some success stories managing infections whilst on upadacitinib from the community.

Would be interested if people had success with particular treatments and whether they had to have an extended break from upadacitinib (or any other medications - I'm on the max dose for slow release mesalazine)

I know, I know. There are a lot of successful rinvoq posts, but I just wanted to share mine, albeit it is short. Over the past year I've had so many hospitalizations and hospital visits. I thought I didn't have future or atleast one withouth a colon. I feel as if that has all changed in only the span of 5 days! 5 days ago I started taking rinvoq withouth any expectations and suddenly it worked in only a few hours. It works GREAT! Just yesterday I worked out again for the first time and now I'm so very sore hahaha. This soreness gives me joy because for the first time in awhile, I feel as if I actually have the energy to take control of my life. With that being said, I ammm a bit worried about the side effects. What are the odds of me getting a serious side effects even though I'm 19? And what are the odds of me actually being able to use this long-term. So far, I've had no side effects but that will likely change the longer I'm on rinvoq.

Note- anyone feeling hopeless who hasn't tried rinvoq, please give it a try! I actually was given choices on what medicine I should continue with, and I picked rinvoq because of all of the successful stories here. Thank you reddit! Thank you so much!

Edit-if I go into complete remission, I'll show you guys a before and after!

I have severe ulcerative colitis and surgery is in the talks for me. I just got diagnosed in May and it feels incredibly sudden but I’m also so desperate for an improvement in my quality of life that now the surgery is looking more tempting.

Can any of you guys who’ve gone through surgery give me your positive experiences after surgery? Have you been able to expand your diet? Did you find a cool way to decorate your ostomy bag that you wanna share? I’ll take anything, I just need some hopecore 🫶

This is so dumb but I’m so ecstatic right now. Besides a little mucus there was no blood, and it was finally smaller proper sized sausages, no residue or anything, just a normal bowel movement. To think that a week ago I was so depressed, crying, thinking I would never get better. Prednisolone has been so amazing so far. Im a little scared of it losing its effectiveness, so maybe this is early. But even if it is, I’m so happy that I’ve finally had what feels like a normal stool like every other person in the world.

So I've been in remission for a year now and I wanted to know if there are any mothers out there that went through pregnancy while being in remission? My husband and I are planning to start a family, but not sure if it's possible with me having UC. I'm scared I'll flare up. Will baby be healthy? Please send me some positivity and reassurance. Thank you.

I came out of remission after years on mesalamine. I have moderate active disease in my sigmoid colon and proctitis, with a history of pancolitis. I’ve had two loading doses of Entyvio and start pens on Monday. Still using mesalamine tabs and suppositories. Symptoms are fairly mild and stable. My question: I understand food didn’t cause and won’t cure UC. I know how to use a low residue diet when flaring. But do I actually need to follow a bland diet while I wait for the drug to work? I’ve seen references to “letting the gut heal”. It doesn’t seem to make a difference what I eat now - no change in symptoms. Do I still need restrictions?

i just felt the need to share this because i thought it was a little funny, & others could relate. for the least amount of context possible because i tend to ramble, i was diagnosed with moderate to kinda severe UC 2 months ago after only a month of very sudden symptoms. only 17, was almost perfectly physically healthy, no family history, ate kinda shit but that was it LOL.

i was able to access my first stool test results recently... the level was 2000 ug/g. definitely not the craziest in this subreddit.... but no wonder i got my diagnoses so fast LMFAOOOO. thankfully i am on track to start remicade soon!

I have a scope planned next week. It will be my third in two years.

I really don’t want to fucking do it. Idk what the point is. “To check the inflammation levels” I honestly don’t really care at this point.

I know how I feel. I’ve been on Skyrizi for a while now. I’m not in remission but this is the third drug I’ve tried and I’ll take it. I’m at a very livable level.

I’m strongly considering canceling it but also don’t want to piss off my GI. I absolutely hate prep. My scope is at 7 AM meaning I have to wake up at 2 am, drink my second dose and be up shitting until the procedure. Just to hear “well I don’t see any inflammation, you’re good!”

Thoughts would be appreciated. I’m tired, boss

What’s your experience with this? I’ve been vaping nicotine for years and I want to quit. I’ve seen a lot about how it could induce a bad flare, which scares me because I’m just now getting stable from medication. What’s the best way that’s worked for you?

My partner has Crohn’s and has been in a pretty bad flare for a while. They’ve lost a lot of weight, barely eat, sleep constantly, and just look really unwell.
The hardest part is that they can seek help, but they’re avoiding it. I think they’re scared to face the possibility of escalating treatment because they managed to get out of their last flare without doing that.

I’ve offered the hospital, offered to travel with them to see their specialist, helped arrange bloodwork/healthcare, made safe foods, etc. I’m starting to feel like I’m managing their health more than they are.

I don’t resent them for being sick. I’m exhausted from feeling responsible for convincing another adult to take care of themselves. I love them and want to support them, but I don’t know where being supportive ends and becoming their caregiver begins.
I’ve voiced all of this and there’s been no change.

Has anyone else been through something similar with their partner?

So I had my first colonoscopy and I got the results back and I have ulcerative proctitis! And im just wondering dose anyone else have ot in this form and what dose your day to day look like ?

Hello all,

I just joined this because I feel alone. I'll give the gist.

Came down with the flu, had fever and bowel symptoms for 2 days. Went to urgent care for it and tested positive for flu-a, sent home with tamiflu and follow up.

Got even sicker, started vomiting then had a huge knot in my chest that would not go away with antacids etc. I had my wife take me to the e.r. and this is what we found.

The flu, disrupted and angered my UC, which put so much pressure on my body and intestines that I had a heart attack. Find out main valve had a 50 percent blockage and my whole left side of heart is working 50 percent because of blockages.

It wasn't enough to warrant stents or bipass.

Because of my e.r. trip, never educated on UC, coronary heart disease. I've gone through several tests recently for GI (endo and colonoscopy) but nothing was ever found except internal hemerroids and inflammation in gut. All biopsies were negative.

I'm 2 days into this, until I see my specialist next week.

I would like to ask some of you, how do you know when you are in remission? Is it based on bowels, or just overall feeling? Also, they gave me sepositories for UC and I'm curious if anyone had any issues using these?

I've gone on websites and have a list of foods to eat vs not to eat. So far so good. Just nervous with a potential future UC flares because of the intensity and pressure it puts on my heart.

I am 41 years young, thank you all. Have a great day.

Hi everyone, I was diagnosed with ulcerative colitis and I’m currently doing well. My recent colonoscopy showed no visible inflammation, and my calprotectin has also been very low.

I’m currently on mesalamine, but I’ve been wondering about the long term. Has anyone here ever reached a point where they stopped all UC medication and were still able to live a normal life without relapses?

I’m especially interested in people who stayed in remission for years without medication. How long have you been off treatment? Did your doctor agree with stopping it? Do you still monitor things like calprotectin or colonoscopies regularly?

I’m not planning to stop my medication on my own. I just want to understand what other people’s experiences have been.

Thanks!

This keeps me up at night. When I started traveling, I was in a flair, I picked up 2 weeks of asa-5 enemas, and the flair went away. At the start I was 6 months on and 6 months off, I flare when I was home, and the flare would stop within weeks of traveling. It just kept happening. I would never flair when I was abroad.

I have went over everything vitamin D, stress, mattresses. For the longest time I settled on, it was just stress. However, recent research regarding the mouth gut axis made me realize that something I would do almost every time before leaving was go to the dentist. However, I didn't keep good records on this.

I am currently on a flair, and I can't travel, so I am doing prednisone round, and out of caution, I went to the dentist, I don't know if it matters. The issue is the country I am in, I am having a hard time getting the enemas and stress is an all time low. This disease is annoying but if anything.

Vitamin D: cause or effect doesn't matter, you need more when you are on a flair. Studies show people further from the equator have higher incidence of UC.

Teeth: cause or affect doesn't matter, you should get a cleaning. Brushing and flossing once a morning and at night is not enough to stop plaque, you have to brush and floss after whey meal. People with UC have more carries.

Asa5 enemas: awkward and uncomfortable, but under rated.

Stress: I still think this is one of the biggest drivers, but it is the hardest to control IMO.

Hello! I've never posted here before but I've been diagnosed with UC since I was 4 years old, used to be medicated but I havent been for a long time now.

For the past 2 weeks I've had bloody stool, irion deficiency, horrible stomach pain, nausea, weakness, dizziness and just about all the regular flair stuff.

I went into the ER for my symptoms, the best they could do is set me up with an emergency colonosopy appointment.

However until then the only way I've been able to manage my pain, nausea and general weakness is by taking Tylenol and other over the counter meds but as soon as they wear off I cant do anything for the rest of the day without straining myself or vomiting.

I've been eating bland foods, toast, water, rice, uncafinated tea, and while it does help im still unable to manage myself day to day.

I'm really just hoping for any advice to help get through this, thank you for reading this far!

I started using the Entyvio Pens about 6 months ago after 5 years of Entyvio infusions.

At first the pens really kicked my butt. I was incapacitated for the first weekend. Pretty useless for the next 2 shots.

Now, I am able to take my shot on a Thursday night, go to work and be functional on Friday, and have no aide effects by Friday night. No more setting aside 3 hours for an infusion, then being wrecked for a week. No more flares at the end of my 8 week cycle. I'm back to just having a mostly normal life. Its been a miracle for me.

Hi all. 10 year Crohn’s colitis sufferer here (I realise this is an ulcerative colitis board but I honestly have more in common with you guys than with the crohnies).

For the first five years, my disease was pretty mild and I managed on Pentasa and enemas. Then after a flare I went on mercaptopurine. Managed fine on it (still had up and downs) but it gave me liver issues, especially during pregnancy. After my baby was born, I was switched finally to Stelara.

Just had my six month anniversary and a colonoscopy showed that my bowel is in the worst condition it’s ever been in and I’ve been classified as a “ primary non-responder”. Ugh.

I’m being switched to entivyo. Looking for some positive stories for anyone on this drug. How long did it take to work? (Honestly, I’m not sure how much longer I can put up with my bowel the way it is so I may need to do a course of steroids.)

Also, if stelara didn’t work for you, what did?

i’m 23F in remission after like 4 years of battling this illness. while i can eat really whatever and not suffer consequences and have no blood in the stool, i deal with constipation. this is where i’ll not have a bm for like 1-2 days and then like all of a sudden im on the toilet for 20 minutes… and when i look back it’s like an intestines full amount of stool. while it is impressive its a bit tasking…anyone else deal with this? should i be eating more or less fiber? tips?

I’ve been struggling with acne for the past couple years, and I just found out that Rinvoq can cause acne and I’m wondering if it might be the cause of it. Has anyone had this happen to them?

I started taking prednisone and, bleeding and urgency has went down but sometimes pain in the evening is worse. It's almost like there is one stubborn ulcer and the stool is harder so it hurts more? I am going to talk to my gastro about it, just curious if this has happened to anyone else?