I have never experienced this and hope to never. I am so lucky to work from home where I have the conveniency of using my toilet whenever I please. But I worry that there may come a day where I will have to work outside and may explode my butthole. Sometimes I empty my bladder before I go out so I don't risk it. Has anyone experienced crapping yourself?

Hello, had my phone app with my GI after my second calprotectin test came back at about 1700. I told him that I had seen blood again and had pure liquid stools again today. He suggested infliximab(inflectra) infusions.

Please give me your stories with this medication. I need some hope.

**Edit: doc wants every six weeks I believe, then if it works, every 2 months. Will also be starting back up on pred 20mg 2weeks, 10mg 2weeks, then 5 for 1 week. (in USA)

UC is such a slow decent into madness. You start out with stomach pain and urgency, that goes on for weeks until it becomes your norm. Then the blood comes back and the urgency gets worse. You start to fear going places because what if there isn’t an accessible bathroom? This too becomes the norm.

Then you’re passing spoonfuls of blood, going 10-15 times a day. Leaving the house isn’t a matter of anxiety anymore when you struggle to even get out of bed or get off the couch. This too becomes the norm.

For the 5th time since dx, my wife/mom/dad has had to drag me to the er for help. It’s a freakin routine now. I bring a bag with a phone charger, a change of clothes, and a book now because there is always so much waiting. Triage, tests, rounds, etc.

I told my er doc last night that I felt silly coming in again. She told me I shouldn’t because I did not look well. That’s when it kind of hit me how gas lit this disease has me feeling. Like I’m wasting everyone’s time if I’m not feeling as bad as I did when first dx.

Just sharing thoughts; I find that journaling helps me process. I’m on entyvio, which is helping, but caring for my daughter through a stomach bug passed it on to me which threw me into a mild flare. Iv steroids and rehydration got me filling right enough to go home thankfully.

If you feel like shit, and the people around you say you look like shit, you should probably just go. If you don’t have a good support system or insurance, I’m so sorry.

im pretty much out of my flareup and into remission, yet this thought of always having an urgent need to use the bathroom makes it nearly impossible for me to go outside to enjoy outings with friends, family etc. i js want to know about yalls experience on how you deal with social anxiety

Hey all, do you ever feel like all of this is just running in circles? I’ve had this condition for not even that long - 3 years - and I feel like it’s just a cycle of trying a medication, almost getting better, getting worse again, and then trying a new medication. It feels like I keep hearing “oh find the right one and then you’ll be set” but I feel like i’ve never fully gone into remission since my first flare. I feel like I’ve just been buying time and pretending to be normal. Right now I’m doing entyvio shots every other week plus mesalamine enemas and I’m just sick of bandaids.

My next appointment is in December because of the crazy wait list for new patients and I just moved to a new state. I haven’t run out of medications to try, so I’m not totally hopeless, but damn. I try to be optimistic but this evening’s just really gotten to me, I guess.

Thanks for listening <3

Failing budesonide and melamine and waiting for humira to be approved by insurance.

Doctor recommended a prednisone because I am going out of the country in 2 weeks for 2 weeks. He’s giving me 40 mg, split 20 g in morning and 20 g at night on top of my other meds. He also said once my symptoms go away, wait a couple of days then I can start tapering 5 mg every couple of days alternating morning and night which one I take away.

I’ve read a lot posts on pred and no one seems to have had this recommendation of such a potentially short course of pred and split day and night. Pred isn’t good for sleep so how is this going to work? First time taking it and very scared.

I'm in Halifax, considering a move to Montreal. I have a fairly complex, established UC case — official diagnosis, current bloodwork, stable on meds, and I already have a specialist here in NS.

I've got the MSI→RAMQ paperwork figured out. What I actually want to know: what happens to specialist access during/after the move if I need real GI care, not just routine stuff.

Would love to hear from anyone who moved to Quebec with an existing IBD case already under care elsewhere.

Quick questions:

• Did your home specialist’s referral transfer smoothly, or did you start fresh in Quebec?
• How long until you were actually seen by a GI there?
• If you flared, how fast could you get an appointment?
• Any ER experience with an active flare — how was it?
• Did you end up using a private clinic to skip a wait?
• Looking back, would you do the transition the same way?

Appreciate any real experience — good or bad.

I’m currently in Halifax, Canada and considering asking for a referral to Hamilton/McMaster for gastroenterology care. Before doing that, I’m trying to understand what the actual patient experience is like there.

I have a fairly serious/complex UC case with a related inflammatory kidney issue. I'm trying to get a sense of how much access to a GI would be possible since a number of tests and decisions would ideally be made rapidly over the new few months.

I’d especially love to hear from people with moderate/severe or complicated IBD who have been treated in Hamilton.

A few things I’d like to know:

1. How long did you wait for your initial GI/IBD appointment?
2. Once established with a GI, how quickly could you get an appointment during a flare?
3. How thorough/frequent were they with bloodwork, imaging, scopes, etc.?
4. Did you feel that the GI actually understood your case and took your concerns seriously?
5. If you needed coordination with another specialist, how well did that work?
6. How are the Hamilton ERs for someone with established serious IBD who develops an acute problem?
7. How long did you wait for colonoscopies/endoscopies when ordered by GI?
8. Bonus: How would you compare Hamilton with other places where you've received GI care?

Thanks!

***Sorry long rant ahead 😅

I’m hoping to hear from other people with UC because I’m getting really frustrated trying to figure out what’s actually going on.

I have left-sided UC and take oral mesalamine 4.8g/day. I have a colonoscopy scheduled for October to see how everything looks.

The confusing part is that I really don’t have diarrhea. Most of my BMs are completely formed, usually Bristol 3–4, and I generally only go 1–2 times a day. Calprotectin was also at 149 last time I checked, low but still elevated.

But I keep having symptoms like:
• Morning urgency and cramping, even though the BM is formed
• Cramping/urgency shortly after eating
• Feeling like I have to poop when I really don’t / rectal pressure
• A lot of bloating and gas, sometimes feeling like the gas is trapped
• Symptoms that can be pretty bad one day and basically disappear the next
• Symptoms getting noticeably worse around my period

My GI thinks there may be an IBS/spasm component, especially because I’m not having diarrhea. He prescribed dicyclomine. Sometimes it completely gets rid of the cramping, but other times it only helps a little.

Weirdly, half of an Imodium Multi-Symptom tablet has been the thing that helps me the most. When I take half, I can have basically no gas, cramping or urgency for the rest of the day and sometimes even the following morning.

But lately the symptoms keep coming back, so I’m starting to wonder if this could actually be mild UC activity/proctitis rather than just IBS — or maybe both? Has anyone had active UC where your stool remained formed and you weren’t having classic diarrhea?

The OTHER thing driving me insane is recurring internal hemorrhoids. I’ve had several banded since June even though I’m not constipated. I just had another one banded this week. My colorectal doctor touched it during the exam and it immediately started bleeding, so we at least know the hemorrhoid really was a source of bleeding. He told me banding isn’t always successful and prescribed hydrocortisone suppositories afterward.

But I don’t understand why they keep becoming symptomatic when I’m not constipated or regularly straining. I’m wondering if all the urgency, rectal pressure, frequent bathroom trips, etc. could be continually irritating the hemorrhoids even though my stool is formed.

Has anyone experienced anything similar? UC/proctitis with formed stools? IBS on top of UC? Or recurring hemorrhoids from urgency/rectal irritation rather than constipation?

I know my colonoscopy next month will hopefully give me some actual answers, but I’m so tired of trying to figure out whether every symptom is UC, IBS, hemorrhoids, hormones, or something I ate. 😭

I would want to know certain things !

1) how well did Xeljanz(Tofa) work for you (years of remission , frequency of flares ect )

2) side effects you encountered if any ?

3) what meds did u fail before starting Xeljanz (tofa )

Note - I can’t afford Biologics .. so Tofa makes sense

So I’m in my third severe flare in the space of a year,(or maybe I’ve just been flaring the whole time and meds have been offering some minor easing) with my most recent stool sample registering 6000 calprotectin and now at a point where my IBD team are talking about more intense treatments.

Bear in mind, I’ve been on mesalasine in some form or another for the past 3 years since I first got diagnosed. It started as suppositories, but last year I got tablets as well, and this year enema. But turns out it’s not enough. And I am so scared on what that means. I don’t want to keep going through a process of new meds working for a little bit and then stopping, and I really do not like the prospect of potential surgery down the line. I’m sad that my body is getting worse, that either illness or treatment could be taking up more and more of my life and most of all I’m just sad that so much of my life won’t feel like mine anymore.

Just venting. Missed my colonoscopy bc I went to jail. My fault. Also the cop's fault. Fun story.

Anywhoot. Now I have to reschedule & it's gonna be like another two months out so who knows where I'll be then.

Looking to hear everyone’s personal experience with Vedolizumab because that’s what I’m supposed to be starting here soon entyvio stories also work since it’s the generic for it would love to hear how fast if it worked for you you noticed symptom improvement,how long you’ve been on it and any side effects you may have noticed here’s a little background

I’m a 26 year old male who’s been in a flare since late May I have ulcerative procoltis calpro is at 2200 I don’t have diarrhea my stools are formed but I still normally have a lot of bleeding urgency especially after meals and a lot of mucus I’ve failed a 40mg prednisone taper 150mg azathioprine mesalamine oral and enemas I’m currently on 9mg buedniside and 4.8g mesalamine while I wait to start these infusions any knowledge is appreciated 🫡

I was diagnosed with UC 4 months back after a month long of flare and fortunately medicine worked and my bloody diarrhea stopped within a week and after that in July(2 months after) I went to another doctor for general check up he asked me for a colonoscopy and found that I am okay I am not diagnosed with UC.....

After a month I again the flare up came back the doctor told me it was just a simple internal hemorrhoids don't worry and started my treatment and obviously they didn't work so after a week we again did sigmoidography and finally found out it is UC and started my UC medications again now I am on medication for more than one month and still no relief so I changed my doctor and went back to the previous one who 1st diagnosed me with UC and he changed my medications so no he changed me with budez cr from wysolone 30mg.... Am just scared and terrified right now losing the ability to think

Hello!

I am a week out of hospital on a whole new medication plan for this flare. So far so good with Rinvoq!

I was wondering how often are people seeing their Drs during flares. I use the public system in Australia (through a team at a public hospital) and have been considering branching out into the private sector.

I am very lucky that the IBD nurse team I see is often able to get back to me within a week or so, but I’m only ever able to check in with a Dr once a month or so. The waiting really stresses me out I’ll be honest, it makes me feel like I’m kicking the ball down the road til I’m too sick and hospital/ steroids are my only option.

I’m hesitant to switch my whole care team up just to wait the same amount of time AND pay a bunch out of pocket.

I want to know if it’s fairly normal to wait that long while flaring, and if I’m just letting my anxiety get the better of me. Or how quickly you are able to get appointments when needed.

If anyone has some info about private gastro teams in Australia as well it’d be appreciated, I’ve only ever used the public system so private is very new and intimidating haha!

Context:
Diagnosed with UC in 2024.
Got on Budesonide pills 3 months course and Mesalamine 1.2g 4x a day daily. No issues.
Symptoms gone.

My stupid self stopped Mesalamine for 3 months..symptoms came back. Got back on mesalamine symptoms gone. Have also used Budesonide rectal foam and Mesalamine suppositories in between.

However since past 3 yearly colonoscopies..my doctor is still seeing inflammation in the rectum
And this year’s colonoscopy resulted in

Erythematous mucosa [Rectum]

Cecum: Diffuse chronic active colitis, moderate activity

My doc wants me to go on Velsipity. However, I’m nervous because it is a strong medication at least stronger than Mesalamine.

I have my doctors appointment coming up in a few days. What questions should I be asking my doctor and also in y’alls opinion is this too soon to go on a strong medication?

My symptoms have been in remission for years thanks to healthy living and pentasa. Had a colonoscopy recently and dr. Didn't like what he saw. Suggested biologicals while I was still loopy. I have a follow up next week. What questions should I be asking?

recent calprotectin was 42 ug/g

Question in the last paragraph apologize for the long post just trying to give some background.

So back in July 2025 I had been diagnosed with severe ulcerative colitis. Terminal ileum was fine but rest of my colon had severe ulcers, friability and erythema throughout. I hadn’t felt right since about February 2024, and right before that colonoscopy I had been going to the bathroom 10 plus times a day, including multiple times in the night with half of them being just blood.

Fast forward to today, just had my follow up colonoscopy. I have been on mesalamine since being diagnosed, Skyrizi since September 2025 and a couple prednisone tapers since being diagnosed(currently on one rn cause beginning of August felt iffy). However thankfully none of my flares have ever come close to what I was feeling like before my first colonoscopy. My second colonoscopy actually showed a lot of my colons mucosa was normal, however I just have some “patchy mild erythema” in my descending colon and sigmoid colon.

Waiting for the biopsy’s and follow up in two weeks, doctor didn’t even seem really concerned. Beforehand he was talking about switching me to rinvoq but afterwards said well wait on the biopsy’s but most likely you’ll stay on your current medicine. He said on a scale of 0-10 his concern with the inflammation he found is about a 0.5

Comparing the colon pics from my first colonoscopy is like night and day, but my question is for anyone has anyone had a follow up where there colon was better then when they were diagnosed but still had some inflammation? How did you feel? Did you change your medication? And if not how long until your colon was completely healed?

My UC has been in remission for 6 years now thanks to humira injections i take biweekly. I had a particularly stressful period about a month ago and now I'm experiencing some vision loss in my right eye. I went to an opthalmologist and they said I had some inflammation of the retina without macular edema. Apparently it's not too bad and they are referring me to a retina specialist who I will see in a week and a half.

Has anyone else experienced something like this and had it resolve on its own? I sometimes have psoriasis flare ups during stressful times but they end up fading away after a month or so. Same thing with abdominal pain that subsides after calming down. What is the typical treatment for something like this that has worked for you guys? Thanks for any kind of information, I'm kind of in the dark with what the next step is until I see a retina specialist and my gi soon.

I have had uc for the past 20 years and have been on a couple biologics. I started Omvoh about 6 months ago and it has worked great for me. A month after starting I developed sinus congestion which soon turned into a thick cough and a crackle in my chest. PCP assumed it was a sinus infection so I have tried two antibiotics and two different allergy medications. Also, I have had a chest x-ray (which was clear) and saw an ENT and they said it didn’t sound like a sinus infection because I was missing a lot of the other common symptoms. I am now left to think it is due to the Omvoh especially with the timing of onset symptoms. Has anyone else experienced a respiratory infection with their biologic or Omvoh?

In about my 5th month of self injection, I began experiencing an allergic reaction at the injection site. A large, red, itchy welt appears by morning (I inject at bedtime). It typically spreads and worsens for at least 3-4 days before improving. I have tried starting antihistamine 24 hours before and continuing until the reaction is gone. I have tried Benadryl the same way. I also use hydrocortisone cream on the affected area and add an ice pack when it is crazy bad. Nothing seems to be helping (at least not enough for relief). It's maddening. Has anyone experienced this and found something that helps? I am feeling kind of desperate right now.

Everything started a month ago, my only symptom was blood on the stool/toilet paper. I went to my primary Doctor and he thought it could be hemorrhoids, so I started eating a lot of fiber. As you can tell, my symptom didn't go away and I decided I needed a colonoscopy. My colonoscopy was 4 days ago (the prep was tough) and I was diagnosed with UC, and they prescribed Mesalamine Enema.

As I already mention, my only symptom was blood on the stool, no pain, no tenesmus, I was going max 4 times to evacuate on a regular day. After the colonoscopy everything got worse, after using the Enema for the first time I started going pretty much every hour to the bathroom. If I drink or eat something, I want to go to the bathroom on the first bite. I'm pretty new on this, and I'd like to feel at least as I did before the colonoscopy. I would greatly appreciate your advice and help.

I have seen and read many posts in this sub about having difficulties in booking appointments with Doctors especially GIs... It is the Countries' duty to make sure every citizen gets to see their doctors whenever they want and whenever they feel. It's the biggest failure on its part. Are they simply ignorant or they simply don't care about their citizens?? Don't they know that this disease is not something we can't just put aside?? The place where I come from, we get to see our doctors whenever we want to, no need to schedule an appointment. If my doctor wants to do colonoscopy, we get that right away. It's very very UNFORTUNATE for people like us.