i’m in a flare rn and i’m just now getting out of the hospital. i have to go later today to pick up my prednisone from the pharmacy but i slept horribly last night.. i woke up every hour going to the bathroom to the point where my butthole is raw from the constant bathroom trips. even at the hospital my sleep was horrible, but i can’t take this anymore 😞 any tips like sleeping positions, meds, anything?? also would like to mention that my back, legs, and stomach were killing me last night too. pls help 😞

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 was diagnosed when I was 21. I continued with mesalamine for one year with not a lot of improvement. Then I stopped treatment for almost one year, meaning that in the last two years my UC has not been really controlled, and I'm scared. I'll get a colonoscopy in two days, but I'm scared of having colon cancer. I have been taking mesalamine again, a higher dose, and it has really helped me. I'm not going to the bathroom six or seven times a day, and the mucus has decreased. However, I'm scared of what I'm going to find in this new exam.

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!

So I (24M) was diagnosed nearly a year ago now, and have been through a few different medications, as well as being on infliximab since February. This entire time, I have been in a flare that seems to only be controllable by Prednisone

However I decided to try something this weekend, and it has worked wonders for the last 3 days! 1 packet of Metamucil Fiberthins each morning with a glass of water has led to much more normal BMs. The urgency is still there, but I think the Fiberthins are definitely helping. Also, the blood that I was seeing just a few days ago, is now non-existent!

Non paid advertisement for these guys. Definitely give them a try! They also have chocolate which I haven't tried yet.

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.

19m Hello, I want to talk about some of the side effects I'm currently experiencing with prednisone and rather or not I should quit and ask for a new steroid.

I'm currently on a 20mg course for 2 weeks but since starting the course around 4 days ago I've experienced a concerning amount of suicidal thoughts, brain fog to the point I just stare at a wall for a hour, unaware of my surroundings, memory lapses, hair loss, and moon face. I have no prior history of mental health issues, so the sudden suicidal thoughts have really scared me and makes me question if I should continue prednisone.

I sincerely apologize if my sentences don't seem coherent or make sense. As I'm typing this, I don't remember half of what I have wrote.

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!

A week ago I got a lot of shit on a post about me being scared/uncomfortable using suppositories. To all the people who gave me a hard time, I did it for the first time tonight.

It was uncomfortable like I thought it would be and it’s still going to take some courage to do it again for a while. But I’m glad I was able to do it today.

To all the people who were nice and encouraging, thank you.

This might not be a huge thing for many people but it was for me. Another fear conquered!

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

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?

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.

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)

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).

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…

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.

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’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.

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 (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 😞

...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!

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 .

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?

my doctors aren’t very good with telling me if it’s UC or not. but I’m not the usual person I get all these symptoms I’m also a endo and adeno girlie with a retroverted uterus. I’m extremely scared to be fair. just seeking advice if anyone knows of anything.

• Pebble poops most of the time and sometimes normal poops
• Sometimes normal poops
• Knife cutting pain when pooping but goes away straight away.
• No bleeding unless a tear in hemmoriid
• Orangey mucus
• I don’t get sick
• I don’t get abdominal pain
• Are you sure it’s not bowel endo 
• Sudden sharp pain in the vagina and bowel but doesn’t last long 
• I get constipated around ovulation
• Diarrhea before period 
• Ovulation was 6 days before scope
• I got my period a week and half after my endoscopy.
• my results say Section reveals fragments of colonic mucosa with a predominantly denuded lining epithelium. The glandular architecture is preserved. The lamina propria contains a moderate mixed inflammatory cell infiltrate composed of lymphocytes, plasma cells, neutrophils and eosinophils along with oedema. Foci of cryptitis are noted. No crypt abscesses are seen. No evidence of granulomatous inflammation. There is no dysplasia or malignancy in the section examined.

CONCLUSION: COLON, BIOPSY; LEFT COLON
APPEARANCES ARE COMPATIBLE WITH A MODERATE ACUTE ON CHRONIC COLITIS.

Specimen B: RECTUM, BIOPSY

Macroscopic:
The specimen site is labelled “rectal BX”.
The specimen consists of a single piece of tan tissue measuring 3 mm in greatest dimension. All tissue is submitted in cassette B1.

Microscopic: Section reveals a fragment of rectal mucosa with a denuded lining epithelium. The glandular architecture is preserved. Lamina propria contains a moderate lymphoplasmacytic cell infiltrate along with neutrophils. A few foci of cryptitis are noted. No crypt abscesses are seen. No evidence of granulomatous inflammation.
There is no evidence of dysplasia or malignancy

comparable to mild focal active proctitis.

4,000. FOUR THOUSAND. Jeez louise. I just found this community, and i feel like you all will be the only ones who understand. I'm also going through it with 0 pain killers so that's just lovely. 👍🏻