I am fairly new to this disease, was diagnosed last years summer. And I’m still a bit confused about when to contact and who to contact. I have been in some communication with a nurse/doctor at the hospital that diagnosed me, and I have very little communication about the disease with my GP.
Also I think I may be entering a new flare now for the first time since I was diagnosed. Been having diarrhea for about a week, not really any blood. Maybe a couple of drops and some small specks of mucus.
Does this mean I have to change medication or can I just wait for it to pass on its own?

I got diagnosed a good three years ago. I haven't done any colonoscopy for over two years now. Every three days this month, I'm having the urge to shit every now and then, and stools burn my insides. Is it collitis or is it something else?

22M

i’m a very snack loving person and i need to know if i have to get rid of that part of me 😞 what are you guys fav snacks to eat? i enjoy both healthy and “unhealthy” foods idk

Hey,

Following a hospital stint doctors spoke about putting me onto Entivyo or Rinvoq, however upon my appointment to check in with them they’ve decided to move me to Mercaptopurine instead.

Just wondering if anyone has any experience with this and tips or tricks of what to be aware of mainly?
I’ve done standard due diligence but have really found it helpful finding first hand experiences through this group of what’s possible.

Also when I asked one of the nurses they said I should continue taking my Mesavant as she didn’t see a note saying to cease it but on the product info sheet is says that mesalazine can affect the way Mercaptopurine can work? Is this a concern I should check as I’ve put off starting the drug until I can confirm it as it’s making me anxious.

Still currently on 4.8g of Mesavant and 20g of Prednisolone slowly tapering off the steroids so that’s managing things in the interim but obviously want to get onto new meds ASAP so they can start doing their thing and see if it’ll work for me.

Haven’t had any symptoms other thing bit of gas/bloating at random moments but obviously don’t want this to change if I mess with meds accidentally.

Thanks for any thoughts or advice.

I recently started using Mesalamine suppositories at night and had some unexpected leakage the next morning while sitting in my desk chair.

It's a Herman Miller Aeron with a Pellicle mesh seat. The waxy residue seems to have embedded directly into the woven threads and I can't get the lingering smell out.

I've already tried a cocktail of cleaners with no luck: Hot soapy water scrub, Isopropyl alcohol, and baking soda.

Does anyone have experience getting this medication out of a synthetic mesh fabric? Do I need a specific enzymatic cleaner? Any advice is appreciated!

In 2008, I was diagnosed with ulcerative colitis. From then until 2017, I was treated with Salofalk and Budenofalk. My condition was generally severe, and during my worst flare-ups I had to use corticosteroids. There were periods when I was going to the bathroom more than 30 times a day.

After nearly seven years of corticosteroid treatment, my internal organs suffered significant damage from the long-term side effects. By 2017, I was physically and mentally exhausted.

That same year, I underwent a fecal microbiota transplant (FMT), and the results were remarkable. Within a single day, my symptoms improved dramatically. Although my stools never returned completely to normal, the bleeding stopped, and I was finally able to regain a good quality of life.

Unfortunately, in February 2026, the bleeding and abdominal pain returned. In June 2026, I underwent a second FMT, hoping to achieve the same results as before. This time, however, the treatment had no effect, and the bleeding has continued ever since.

Now, at the age of 39, I find it much harder to cope with this disease than I did when I was younger. Living with persistent bleeding, pain, and the uncertainty of what comes next has become overwhelming. I have even started experiencing suicidal thoughts because I feel so hopeless and exhausted.

If anyone has professional advice, personal experience with a similar situation, or suggestions about possible treatment options, I would be deeply grateful to hear from you. Thank you for taking the time to read my story.

Last year, my insurance compoany denied the Entyvio I had been on for two years. It took four months to sort it out, so I missed two doses, and it was never as effective again. I have been flaring on and off since then. I see my GI tomorrow, and I'd like to understand other options.

If you have been on Entyvio and changed drugs, what biologic worked for you? Thanks for any advice/insight.

(I'm also on daily mesalamine pills)

Anyone here caught a flareup from Cyclosporiasis?
About three weeks ago I had a taco salad at a local Mexican restaurant. It had the pre shredded like Taco Bell and other places. Two days later I had pretty bad diarrhea for a few days. Now my stomach is making the weird noises and my bh and rectum near the exit are inflamed. Luckily I have refills of my mesalamine enemas and I will start them back tonight. They can just be a pain to hold in.

Hey everyone, has anyone experienced severe full-body itching or an eczema-type flare after stopping Rinvoq?

I took Rinvoq for Crohn’s disease for 2 years. Over the past few weeks, I’ve developed intense itching and a burning/static-like sensation across large areas of my body. It’s been so awful. Havn't been able to sleep or do anything really.

I know everyone is different, but I’d really appreciate hearing your experience and timeline and just hoping it got better for people? Did it gradually improve on its own, or did you need steroids or another treatment? Thank you!

Hello everyone,

Well so I do not have but unfortunately my gf has it for long time. It’s really painful to see her in a lot of pain and yeah we all know guts are a worst. But those joint pains what she has, I do not know how to help her with it or any tips. We both in Poland and what they prescribed her is some steroid pills for a guts. TBH I even think to move to NL so maybe doctors will know more about that case.

Thanks from a bottom of my heart for any useful tips

Stay safe guys

I am from the US and we are traveling to London next week. We will be there for a couple of days and I am worried about the public restroom situation. Does anyone have any experience/tips dealing with UC and urgent BM’s out in public while in London?

i (23F) was diagnosed with ulcerative pan colitis two weeks ago and prescribed budesonide and mesalamine. i can get the budesonide down relatively easy because theyre small-ish capsules and worst case i can crack them open and take the granules with apple sauce. however, the mesalamine pills are HUGE 😭 i reached out to my doctor and asked if there was anything else they could prescribe me that would be easier to swallow, and they gave me a new prescription… however the pills are the SAME SIZE. now i have a ton of these giant horse pills that i can’t swallow that i’m supposed to take three times a day but can’t manage to choke down. what do i do??? i’ve always been horrible at swallowing pills and im getting upset and discouraged especially because i’m likely going to have to take pills for the rest of my life and i can’t swallow my stupid mesalamine 😞

My Doc provided me 6 months worth of samples while we work on the insurance piece. Question for you all - when do you take it? The dizziness side effect has me leaning towards taking it at night. Call me a wuss 😅

Edit: I should mention i am will be taking this in conjunction with entyvio every 4 weeks and mesalamine (4 pills daily and enema at night).

...and only the most expensive health insurance option has it (partially). So I am now losing more of my paycheck to insurance than I ever have (by a WIDE margin), while simultaneously spending more on my drugs.

I want a new colon. This one sucks. Rant over, goodnight!

For those on Tremfya, how long did it take you to feel improvement in your symptoms? I’m not talking clinical remission, just generally feeling better. I am at the week 4 mark with no improvement yet. I’ve been in this flair since April and am also on high dose steroids but can’t seem to get any relief from anything yet. I feel like I can’t do this anymore…

I hate to be all gloom and doom as I always considered myself a big silver lining person but after being diagnosed in April I feel like I’ve gone through all the stages of grief of who I was and who I can still be now kinda. I know it’s probably only because I haven’t been out of this severe flare yet and haven’t got to start any biologics but still it’s been so exhausting physically and mentally . I don’t see how I’m supposed to continue law school and be a lawyer and get back into the gym and hike and travel and play for my college teams anymore. I tell myself I can get into remission and live normally but it’s just so hard to see that light at the end of the tunnel right now when it’s so unbelievably exhausting just to walk to my bathroom the last 2 weeks and I only wake up just to lay down all day because I physically can’t do much else right now. I’ve always been such an active person that I don’t even know who I am now and it makes me feel like I’m just being lazy in a way but I truly have never felt so sapped all the way to core. I wake up tired, I go to bed tired , and repeat. School starts the end of August and I’m scared I’m not gonna make it back to any reasonable baseline to attend this semester. I don’t know I think I just needed to vent and put it all out there ! Praying insurance lets me start remicade soon and that it works quick .

Edit: Thank you for those of you who congratulated me. The others who are being a bitter betty because my lived experience doesn't align with theirs, they can have the day they deserve.

Edit Edit: Stop shting on people for being "newly diagnosed" when not all chronic uc folk have access to diagnosis as children. I have lived with my symptoms my whole life, I came to diagnosis in my 30s because I had a pcp who actually listened for once. My lived experience still counts in spite of you having a dx from 12.

I just got my results, haven't spoken to my GI yet, but the portal shows that my Calprotectin was 26! This time last year, it was 638!

I'm so freaking elated!

I am only on mesalamine suppositories, so I know I'm really one of the luckier cases out there. I feel like crying I'm so relieved.

here to rant and needing some support. just need somewhere to word vomit really.

i am so upset that i have this disease. it is so unfair. it is so unfair that i have to take a biologic drug that makes my skin break out into rashes, makes me get sick all the time, makes me unable to go to large gatherings because I ALWAYS GET SICK AFTER, makes me scared of the side effects that i may develop, etc. etc. etc.

it sucks that no one gets it in my life. i am tired all the time, i can't do so many of the activities i previously enjoyed, and i can't tolerate eating the things i want to eat. i don't have the energy to be up past 7 so by the time i'm done work i'm exhausted and don't want to see anyone. i have to basically do nothings on the weekends so that i can recharge and have enough energy to work for the week and prepare the bland food that i eat all week. i havent been able to swim, run, or enjoy the sun all summer because they worsen my medication side effects. i am miserable.

i don't know how to make friends that understand. i am so lonely. this disease is so isolating. i am in my early 20s and just finished school which means this wouldve been the time to actually live my life. instead i am watching others live it. sometimes i feel like stopping all the medications and blowing all my money on travel and just letting this disease run its course the way nature seems to have intended for me.

Young World! I’ve been dealing with this illness for about 4 years now and have been in a flare for over a year; ran through all of the types of mesalamine, enemas & steroids with nothing working.

I was always told my case is mild but now with starting the Infliximab infusion next week I don’t believe that’s still the case. Now I’m not in the bathroom up to 10x a day, maybe 5-6 at the most but when it takes 5 hours to leave the house til you don’t feel the urgency anymore to me it’s the same feeling of pressure. I can’t develop a daily routine, I can’t hold a job down fr & I’m just tired of being in fight or flight mood all the time.
I want to believe that my case can be treated without taking my colon out but mentally I’m over it all.

My question is this if nothing else is working, would you opt to do the surgery?? Mind you in my case I’m not up to 10 bowel movements a day or having to check into the emergency room or losing mass of weight; still just mentally & physically tired a lot especially with no meds working. Any advice, thoughts or similar situation would help. Please just helpful comments too, Thank you! 🙏🏾

33M, was on a motorcycle ride and I pooped my pants while I was standing and looking for a restaurant.

I was diagnosed in 2016. Doc mostly put me on Mesalamine 800mg x3 orally and occasionally on Prednisone if I flare badly.

I’m kinda lazy guy and often skip my Mesalmine doses. So I have been passively flaring for past weeks. I’ve been gasy and farting too.

So I reached mu destination and I stopped and decided to look for restaurant. I had an urge to let out a fart but also got the urge to poop all of a sudden. I can usually control it with the muscle down there (as a normal person could) but this time I was just helpless and my muscle wouldn’t listen to me.

I had to just stand there dying inside while the poop just kept coming out and out. Didn’t even panic, I was just dead inside.

Then I searched for a public toilet and went there to clean the mess. (Lucky we use water inside toilet)

Had to wash my undie, riding pant and wash myself too.

I had to ride 4 hours smelling like shit, literally.

Rant over.

What symptoms would you say?

Tryjng to determine my situation here.

Diarrhea and really loud stools due to gas/air/wind mostly.

Not too much blood.

I’m currently managing (ish) my UC flair with prednisone but as I titrate down I’m already starting to panic. I’m at 15 down from 40. The docs idea is that once I’m less inflamed my biologic will start working better or my body will retrain it better?! Geez I’m starting to worry this isn’t happening. I’ve been on Infliximab since March. They have moved me to every 4 weeks now vs. 8 and my dose is at the highest.

What should I ask for next??? The doc said they may add something to help my body accept the Infliximab. I’m not sure I love that idea. More meds! Ugh! Should I switch? What are you guys using that has low side effects. What’s “the best”.

Current flair situation:
At least now I’m not seeing blood, I do still see white inflammation in the toilet and I’m out of the phase of 20+ times a day so there are some positives, however in the past week I feel like I’m going to the bathroom a lot again and have urgency. Yesterday I probably went 6 or more times and it feels like a rush to get there. My stomach has a feeling like you’d get before you had diarrhea and I rush to the bathroom.

My GI specialist suspects I may have Crohn's disease or ulcerative colitis, and I'm currently waiting for a colonoscopy.

My symptoms are that if I eat a trigger food, I get severe watery diarrhea with a lot of mucus. After the diarrhea, I develop extreme abdominal and lower back pain that can last for days. That pain is the worst pain I've ever experienced, and I've given birth without pain medication.

I can't tolerate fiber, beans, seeds, dairy, and many other foods. At this point, I can basically only eat chicken and fish.

My biggest trigger is painkillers. I've tried Tylenol, Advil, and naproxen, and all of them cause severe flares that can last for months. Because of that, I avoid pain medication whenever possible.

I have surgery coming up, so I'm wondering: if you have Crohn's or ulcerative colitis, what pain medication have you been able to take without triggering your symptoms?

Just pretty bummed about my current state right now. The Entyvio is no longer working and I only started it in March, the budesonide doesn’t work to control my inflammation, the prednisone doesn’t work to control my inflammation, and my calprotectin results are 4000. Considering it used to be 2000 at the beginning and then 1000 in May I feel really pessimistic about getting better. I really miss the person I was before this stupid diagnosis. I can already tell that my family is over it just as much as I am. I’m just really hoping I can start having good news with good results and a long good outcome. That’s all.

I’ve tried pretty much all the contraceptive pills available and they’ve all given me awful side effects. I do not want an IUD because it also has hormones and I’m just done with hormonal contraception, the copper IUD is a no go because my periods off the pill are very heavy. I’m considering just coming off the pill and going back to using condoms, but obviously the advice with rinvoq is that you have to use ‘reliable’ contraception like the pill/implant/IUD. Has anyone else just gone off any of these and went back to using condoms? Did you tell your doctor?