Just wondering if anyone else is the same…
I can have the worst morning, back and forth to the toilet, over and over and over again, and then when it comes to going out my body suddenly knows how to behave. And even if I do need to go, I’ll try in public toilets or friends houses, restaurants etc, but it somehow waits until I’m home.

Hello all! I’m at a crossroads in my fight against UC.

For context: I was formally diagnosed with UC after a colonoscopy in late February 2026 after a few months of a pretty rough flare, which I was able to get the flare in check (mostly) with Mesalamine suppositories and a Budesonide foam. Still took about 2 months to fully clear up.

After the colonoscopy, I was prescribed 4800mg Mesalamine oral. Almost immediately upon starting the oral Mesalamine, my symptoms vanished. No more bleeding, no more diarrhea, etc. I also maintained the suppository, but ended up switching to the Mesalamine enema later on. Currently I do 4800mg oral in the morning and an enema at night.

Anyway, I went in for my 6 month follow-up colonoscopy last week. My GI found that I am in clinical remission (no symptoms) but NOT in endoscopic remission, so I am still at a higher risk for colon cancer and future flares. There is still inconsistent inflammation in my Sigmoid and other areas. He said that I’m still at a Mayo 1 diagnosis based off the lab work.

He suggested switching from Mesalamine to Velsipity (etrasimod) or Entyvio (vedolizumab). It makes me somewhat anxious to do this when I really don’t feel that my body has failed Mesalamine, because I’ve had <5 incidents of bloody stool or any UC-related symptoms in the 6 months I’ve been on the Mesalamine combo. That being said, the biopsies came back consistent with Mayo 1 and minor inflammation, so I don’t want to increase my long term cancer risk.

Another factor is that I am active duty military. Velsipity is an “ok” in the eyes of the military, but Entyvio has the potential to make me non-deployable and potentially face a Med board. I’m not quite ready to exit the military, but from the research that I’ve done, Entyvio seems to be safer and more effective at treating UC.

I just wanted to see if anyone else has been in a similar circumstance, or has any insight to this problem. Should I get a second opinion? Not really sure what to do…thank you all in advance!

Hey everyone,

I have bad back pain from building so rock stair steps. I have hurt my back before but this time is pretty serious. My normal doctor was out but another doctor at my Dr’s office had an opening.

The doctor didn’t do much besides saying, “oh lower back, I have a shot and some muscle relaxers.“

nurse comes in and gives me the shot and then I leave.

As I leave I do some research and see that Toridal is a serious NSAID. Wtf. did the dr not read my file? Did they think I was just looking for a fix?

It has been 6 hrs and my back still hurts and frick, how bad is this NSAID going to screw me up?

Anyone dealt with NSAID like Toridal before?

I'm going to attempt to be light hearted about the unfortunate reality. It probably won't work.

I had someone 6 years younger than me try to convince me that suffering makes you stronger.

Not with Ulcerative Colitis.

Before diagnosed, my iron and blood levels were so low I "cooked" dinner by leaning on a counter and teaching my 5 year old how to make a quesadilla. I recall being happy that my baby at the time was easy and I could lay on the couch to feed her a bottle.

I think anyone in this situation has lived through the depression of life.

Happy to be diagnosed, happy to have gotten iron infusions, happy to no longer have a flare.

But I wasn't a better person.

I didn't learn any lessons. (Except a bunch of pessimism that psychologists say is toxic)

Now, seeing what my grandma with Ulcerative Colitis has gone through... Ugh... My grandpa looked at me with sadness when he heard I have it.

It's cool to suffer when you exercise, but I have nothing for ulcerative colitis.

Hey Yall. My name is Madison, I'm 24 (diagnosed with ulcerative proctitis at 19), and I'm struggling. I've been in a flare for 6-7 months now, and my flares cause swelling and proximal constipation. In some aspects, it's great that I don't have diarrhea and deal with that sort of urgency and associated complications, but constipation can be scary and the risk of bowel perforation associated with it scares the shit out of me (no pun intended). I also feel like I start healing, and then the hard stool moves through my colon and literally shreds it, which puts me back at square one. I don't strain, it just ends up forcing itself through. Most of the advice and resources I see are geared toward people that experience diarrhea instead of proximal constipation. I've also been on 2 different prednisone tapers in the last 3 months, neither of which did anything, and unfortunately that can be the case for proctitis because the medication just doesn't reach that far. Does anyone else deal with these issues? If so, how do you manage it? Also, what diet/foods would be best for this issue?

Hey guys,

I’ve had UC for about 8 years now and I live in Canada. I’m usually a pretty big homebody, and I’ve been on Humira for the past 6 years.

Recently, I had a really bad flare where I was going to the bathroom 15+ times a day for around two weeks. I ended up going to the ER, was put on prednisone, and had a colonoscopy. My doctor told me I had active inflammation and that my UC had gotten worse, so we were discussing moving on to the next line of treatment, possibly a JAK inhibitor.

Around that time, I started taking 4,000 IU of vitamin D3 daily and fiber gummies before I eat.
Since then, things have improved a lot. My bowel movements have been much firmer, I haven’t noticed much blood, and I haven’t had another major flare.
I’m curious if anyone else with UC has started taking vitamin D and noticed a significant improvement in their symptoms. I have been off the prednisone for 3 months.
At this point, things have improved enough that I haven’t needed to start the JAK inhibitor yet.

Would love to hear if anyone has had a similar experience.

Was diagnosed with proctitis June of 2026. Been on mesalamine supp, enema, and oral. Right now I can function fine just have bleeding small amounts. My GI isn’t happy with the progress and wants go straight to Entyvio. Never hospitalized and never been on steroids. A bit concerned about Entyvio and its side effects as I have two little kids and they bring home lots of bugs. Not sure if anyone has any experience with proctitis and Entyvio. Thanks

I was on what I've learned now to be remission for 15 years. I went through about 4 months of torture with 2 severely botched root canals. Had me on a rotation of antibiotics every 10 days. That plus me taking 800mg of ibuprofen every 6 hours with in between Tylenol for breakthrough pain. Suddenly, a few months later, I noticed changes to my digestive system. Reminicent to 15 years ago. Everything is giving me bad stomach cramps, I can't hold food in, I gotta run to the bathroom even with water. That progressed to crazy bleeding (in the toilet) and not being able to even leave the house to see a doc bc it was that bad. I got prescribed prednisone but it did nothing. They raised it to 40mg in the ER, did nothing. Eventually, I got a colonoscopy, intestines severely inflammed. I personally blame it on all them antibiotics and ibuprofen but doc says otherwise 🤷🏽‍♀️

Doc explained to me that he took some biopsies and I'm going to need to take biometrics for life but need prior authorization from my insurance. I was groggy from the procedure when he said this so I figured I'd research when I get home. A week has passed and I guess some of the approval has gone through bc I got a text with the med name and how to get a discount. Whatever. I researched the name, and it's shot infusions? Like wth exactly is that? Do I need to go somewhere weekly and get it "infused?" The list of side effects omg is insane! Diareah, stomach cramping (um, hello, I'm suffering that weeks now why do I want more) seizures, confusion, swelling in the extremities, urinating pain, life threatening infections, liver damage and worse may increase the risk of cancer. There's way more i only pointed out the ones I think are horrible.

15 years ago I got prescribed Asacol and told take them for life come back for your yearly check up. That was it. I took it about 6m and I never got it again.

Sorry this was long winded. I feel so legit lost.

Hey guys, I'm 30 years old and last year I was diagnosed with mesenteritis and am going on off with pain in my colon, but I've been controlling it with medicine for the last few months since December .

The thing is, in the last month or so I've been having this abdominal pain in the left side and lately I've been seeing some transparent mucus in my feces more than 2 times a day every time I go to the bathroom.

Last year I had an abdominal scan and it didn't show up anything except some mild inflammation in my colon and 2 doctors said that it was maybe because I had a stressful in daily life.

Could this symptoms be IIS or the start of an UC?

Thank you so much for reading.

I realize this post is 9 months old and I've never posted to reddit before so not sure if I'll get a response,​ but I found this thread today after doing some research following my colonoscopy a few days ago and it really resonated with me.

I was diagnosed in 2023 with severe pancolitis and about 5 months later I was in clinical and endoscopic remission with signs of mucosal healing in tissue biopsies. ​I've stayed in clinical remission since and assumed I was also in the deeper levels of remission too.

Recently I had elevated fecal calprotectin levels, so my GI suggested a scope to see if I was losing response to the biologic and if an increased dose frequency​ was indicated. Scope revealed endoscopic remission of the entire colon except one small section of 1-2 cm​ of mild active disease/inflammation. No tissue biopsies were taken.

The research I've done seems to indicate that endoscopic and histologic remission is really the goal now, and disease that is managed to this level is 52% less likely to flare within 12 months compared to those with evidence of mild disease.

I've always felt lucky that I got my life back very quickly after diagnosis, but now I realize that clinical remission isn't the whole picture and having untreated mild disease puts me at risk now and in the future​​​.

GI says to follow up in 6 months or earlier if I feel like I'm entering a flare, but I feel like I want to aggressively pursue deeper levels of remission instead of wait and see. ​

The disconnect between symptoms and active disease is another frustrating feature of IBD, especially because I now fear that feeling well doesn't mean that I'm actually doing well.

​

​​

Hello all. I was diagnosed with Ulcerative Proctitis in December of '23, starting with mesalamine suppositories & eventually moving to solely oral. Well, about a week ago for the first time since starting meds I saw blood. And not like just a little dot from excessive wiping or hemorrhoids (not something i am unfamiliar with), it wasn't a crazy amount but it was in such a way that I knew it was UC related. Since then, and maybe my anxiety is getting the best of me, ive felt as if I have a fullness and a dull ache in the rectum that just wont go away. I contacted my Dr. Office & told them my symptoms. They wanted me to start back up on the suppositories and scheduled a visit for a few weeks from now( dr. Is out of the country apparently, but i was able to speak to his assistant.) Now im just kinda bummed. Im not sure how all of this works exactly. I had a colonoscopy about 6 months ago & everything was fine. Now im stressing that more meds are being added to my routine and fearing that it may be permanent. Admittedly ive never been the best at taking meds regularly and the oral mesalamine was no exception, the suppositories were a bit of an exception because of, uh, the way theyre taken. lm worried that I may have forced some sort of progression in this disease with my irresponsibility. Has anybody faced a similar situation? Am I in a hopeless spot, or blowing it out of proportion? I know that I need to tighten up with my meds, and as of late I have been, I just hope it isnt too late. I appreciate it if you made it this far.

36 M, UC. Diagnosed last year. Took my first maintenance dose of Tremfya last week. Today is the first official day of school. I’ve been on the toilet since 3 am just trying to get out what I can. I am back to liquid with mucus. I am not sure if I have a stomach bug or if I am truly regressing. Contemplating wearing a depends. Not how I want to start my first day back. Last year was awful, I missed 20+ days and used most of my sick time. I maybe failing Tremfya, did some labs to see if the numbers have improved.

I feel like I am in a losing battle. The stress of returning and the fear of having an accident at work probably hasn’t helped. I just want to be able to do my job without worry of shitting myself in front of teenagers. Last year if I had a morning like I am now, I probably would have called out. Since it’s the first week back, it’s pretty universal that most teachers don’t miss any days within the first month or two.

Obviously I need the job, my wife is home with our 9 month old. I want to support my family, if my year goes like last year, I have to really consider another career but I am not sure what that would be.

To any Teachers returning in the next few weeks, I wish you the best of luck.

Doctor just threw at me that I “may have silent inflammation that could lead to cancer”

Here’s recap of my history as abbreviated as I can:

- diagnosed with proctitis in 2020

- had less than a handful of flare ups until fall 2025 when I flared post delivery of my second baby

- colonoscopy came back good, very minimal inflammation and I was told to just continue mesalamine suppositories as needed when I felt flare coming

- 3 weeks ago I had bad bought of diarrhea- not sure what brought it on but the start of my flares typically never are just diarrhea

- 5 days later (and post 2 doses of Imodium) I started seeing blood and have more of my typical flare like symptoms - gas, urgency, blood, mucus

- for about 1.5 weeks I’ve had several days where it’s the worst I’ve experienced in terms of urgency (8-10x/day) and volume of blood but also have had days where I go only 1-3x

- last 2 days (day 20 or so) I have had zero episodes . Been taking 1000mg mesalamine suppositories nightly for last 2 weeks and 1tsp slippery elm the last 3 days once in the morning

- week before last when I was really at a low point I went to my GI doc (though saw someone else) and he had me do stool sample but also said it’s time for steroids, biologics and another colonoscopy (so less than 1 year later) . Today he told me my inflammation level was “around 800” and though I appear to be doing better I may have “silent inflammation which can cause cancer”

Overall I feel a bit like he’s fear mongering me but I also do not want things to get worse. Would appreciate anyone’s thoughts on this if they were in this position.

year 4 ulcurtive colitus, I weigh less than I did when I was 13 and 5 inches taller, have alot of other complications but Its like cutting a steak infront of the dogs watching all my peers live there best lives and im just shitty (pun isnt funny)

Hi All, I haven't been in a flair in as long as I can remember, but from those times I developed bathroom anxiety which usually only comes with day of traveling, usually when flying. I may go or force it and try multiple times before getting on a flight. I tried this last trip taking .5 lorazepam which made me was less anxious and care free, but I still caught myself wondering to the bathroom about 3x before my flight to and from and sometimes going, and other times thinking and "feeling" like I needed to. Has anyone tried any medication that just takes that edge off? maybe I just need to try an increased dosage and see if that chills me out enough.

I'm in a flare right now, and every time I fart it's wet and every time I change clothes I have a shit stain on my underwear. Been like this for a few months. Flare is starting to let up, but still having this issue.

I'm at work and lifted my leg to shift position and smelled shit on myself. Fortunately I'm not close to anyone. Just posting to say I hate this disease. :)

I (36,F) was diagnosed with moderate/severe UC a little over 2 years ago. At my worst, I was hospitalized for 5 days (released early to attend a funeral) after having severe flare symptoms for over 2.5 years, and the highest my calprotectin ever got was 218. They could never really explain why it didn’t get very high, despite having “lead pipe syndrome”.

Lately I’ve been starting to feel awful. I’m having nighttime bowel movements more frequently, cramping, fatigue, severe body aches, increased gas, increased gurgling, I’m either constipated or having urgent diarrhea and I never feel like I’m done despite nothing else coming out. I had testing done and no infections came back, along with my bloodwork looking totally fine. My fecal calprotectin came back elevated, but just slightly (47.8, up from 26 a few months ago). I know it’s not very high/still “normal” but I feel like that’s not a great way to see how I’m doing. I’m currently on Entyvio every 8 weeks. It’s been working fairly well, and had me in remission according to my last colonoscopy.

Now I’m wondering if anyone that’s had flare symptoms without a high calprotectin was able to get doctors to take it seriously? I was willing to accept most my remaining GI symptoms/food sensitivities were IBS, but now that the aches are this severe I’m not sold. I work as a high volume bartender/supervisor, and I’m starting to struggle to keep up between the fatigue and aches.

I’m just not quite sure to do. I want my doctors to look past the numbers, but I also worry I’m making too much out of something small. What would you do in my situation?

What’s next after rinvoq if anyone’s switched from it? I’ve been on it 14 months now and it has helped alottttt but just can’t seem to get in full remission plus my latest cal pros have raised but thinking that’s due to an infection or something as I felt terrible when doing them compared to now again.

I’ve been on infliximab & aza and currently taking mesalazine granules aswell as switching from supps & enemas. I’m anxious about switching but also thinking i’ll never reach full remission like seeing people on this app do.

How on earth does anyone actually keep that inside them for 5-10 minutes?

I’ve instantly gone like 2 minutes after using it hahaha they’re impossible to keep in!

Hi everyone, I'm making this post not to fear-monger or give any sort of medical advice, but more so to learn from a horrible experience my mom had battling UC and her eventual death from complications of UC.

My mom had been in remission from UC for several years and was stable on Entyvio infusions. She had recently been having a bad flare-up, was in severe pain, and lost a lot of weight. She was really against going to the hospital because she hated waiting for several hours to be seen in the emergency room, but this flare-up felt different. She had lost so much weight, was pale, and in so much pain. We eventually convinced her to be seen, and after waiting in a Kaiser ER for about 12 hours, she was finally admitted to the hospital. She was hospitalized for about 7 days, then sent home. I honestly think she was sent home way too early, they gave her a blood transfusion, fluid replacement, and recommended bowel rest and sent her home with opioids and steroids to help calm the flare down. But she was still in so much pain and looked very ill. Her CT scan at that point showed severe inflammation consistent with UC, but I didn't see in the report any evidence of a bowel perforation.

The next week was a blur. She had continued severe pain, was barely tolerating her liquid diet, and she was really hesitant to go back to the ER and wait a ridiculous amount of time to get help. She called her doctor, who reordered her pain medications to get her by. I'm frustrated by this because I feel like they should have done a repeat scan and not reordered her opioids since she was still in severe pain.

Anyways, she ended up having a cardiac arrest at home, was resuscitated at the hospital after maybe 20 minutes, her scan showed a large bowel perforation, and she was immediately being prepped for emergency surgery. Basically, she survived the surgery, but was in severe septic shock and was in multiorgan system failure, with neurologic injury, and passed 48 hours later. We don't have a lot of answers as to why this happened, aside from that steroids can weaken her bowel walls, making a perforation more likely, on top of the inflammation and ulcers that were already there.

She was only 52 years old. The moral of the story is that if something feels off, trust your gut (no pun intended) and go to the hospital. If your concerns aren't being heard, find another provider/hospital.

We are heartbroken and never thought this would be her outcome, especially after she had been doing well for so many years. Before her remission, I watched my mom suffer a lot, and I just want to say you all are very strong for battling this condition, and I don't wish this outcome on anybody <3

Hi,

I'm wondering if anyone here has had kidney problems caused by mesalamine. If you did, how did you find out? Did they end up discontinuing the medication? If so, when did they decide they should discontinue it? At the first sign of kidney issues? I've already asked my doctor through the patient portal. I just wanted to ask these things here while I wait for his response. I find it helpful to learn about other people's experiences with things like this.

Question for anyone who has both UC and HS: what biologic are you on?

They wanted to put me on entyvio, but as I said I also had HS, they decided to put me on adalimumab biosimilar instead. Now I'm thinking I am quite unlucky to have both conditions, because Entyvio seems to be a safer option and adalimumab can cause cancer as a side effect. Also it's reported to be less effective for UC. Is there someone with a similar experience?

My hs is currently quite mild. I've never been on biologics yet.

Diagnosed at 18, now 34. Have had some insane ups and downs like most of you, but noticed I haven’t had a flare in around a year now. No medications. Just cut out a lot of people, places, and things that drain me or make me feel “less than.” Especially cutting out people that made me feel like whenever I talked about a win in life it was just…weird energy. So most family and friends. Now I focus on my home life, my health and fitness, my wife and that’s about it. Not much else gets my energy and by creating those boundaries my health has skyrocketed. Anywho, yeah, highly recommend doing a check in on responsibilities and things/people you give your energy and life to on a daily or weekly basis. It’s worked wonders for me. Cheers guys. 👍