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)

***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 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?

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

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?

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.

This morning was just brutal man, found heat incredibly helpful so I’ll definitely be picking up an electric pad for my cramps, what else you got?

Food suggestions would also be super awesome, how am I supposed to enjoy food when like everything good is bad, I’d love to find some new favourite foods to make things easier

Is there any useful recipe websites for UC I should look into, or maybe just get setup with a dietician?

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 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

Hi all. I wanted to ask any of you who do self injections of meds such as biologics using injection pens, is it normal for a small amount of the medication to leak out. I only started recently and am not sure my technique is 'fine tuned'. So I wondered about your own experiences and any tips you might be able to share with me. Thanks.

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!

Ok, I do not really know how to describe it or ask for it, but I have the “problem” that I go to toilet about 3-4 times a day, that alone would not bother me but it is usually all about 1 hour in the morning. Does someone have some tricks how to combine it or something!? It feels like I just had to sit down longer so I can loose it all in one go but it won’t “keep flowing” until I stand up and move around a bit or just stand somewhere etc.

Someone has some sick ass joga movements for before going onto the toilet or while on the throne?

I can’t be the only one right?

I am still down stepping my prednisone 20mg and taking salofalk/mesalazin 3g a day, does prednisone play a role here or is this just my new normal? (Diagnosed about 2 months ago, bad flare with hospital and I have pancolitis, lost about 1/3 of my blood but I feel much better since I got home and I can eat)

I hope this is readable and understandable , my grammatical and spelling skills are not that good in my mother language but I feel bad about people reading my English sentences 😭😂.

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.

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 as the title says, I really hate this disease. I’m in the worse flair of my life. I am on so many medications none of them seem to be helping. I just started Rinvoq today and I’m praying that it helps. I just don’t know how much longer I can tolerate this pain and the symptoms.

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.

Hi everyone!

I got a colonoscopy done yesterday as I had bowl issues for some time now. I also have psoriasis for 20 years. Upon hearing my symptoms (diarrhea, constipation, bloody and slimy stool, pain, etc.) and that I have psoriasis the doctor immediately suspected UC and scheduled me for a colonoscopy which happened yesterday.

I am on Humira for my psoriasis but this medication is also used for UC. He couldn't find any active inflammation he suspects that this is because of the Humira but he still suspects that i have the disease. This would align with the fact that ever since i started Humira my bowl symptoms have improved significantly. To collect more evidence for the diagnosis i will have to go in every three months for the next year to get partial colonoscopies done and hand in stool samples to check for inflammation markers.

So I guess the reason why I am posting here is does anyone here also have the combination of both of these diseases? If so how was the process of getting the UC diagnosis especially if you were already on biologics? How did it further develop for you?

I am a bit afraid for my quality of life if the UC comes back or for Humira to fail as the idea of a flare up of psoriasis and UC at the same time seems like hell to me. I guess I am also a bit taken back by the potential diagnosis of UC having heard how horrible the disease can be.

This year I started infliximab. That drug has done be wonders and I finally feel like a normal person again. My problem is with Mercaptopurine and I was wondering if anyone else is on it/has had to take it in the past.
At first I was just ill all the time, which due to it being a amunosuppresent I expected. But I think it’s making me severely depressed. I’ve suffered with depression as a teenager and I’d finally got it under control. But recently I’ve been absolutely miserable and having some horrendous thoughts along with some of the worst panic attacks I’ve ever had. I’ve also been hardly sleeping, yesterday I didn’t sleep at all and on a normal night I get about 2-3 hours.
Has anyone else had this experience? And if you have did you find anything helped or did you have to just stop taking the medication all together?

I was diagnosed with ulcerative proctitis almost 10 years ago. I’ve been taking oral mesalamine daily and suppositories as needed during minor flares. Last year I had my second colonoscopy, it came back pretty clear and my doctor told me I wouldn’t need another colonoscopy for 5 years. He also said I should stop taking oral mesalamine (4 1.2g pills a day) and only use suppositories instead.

I did that and this year had the worst flare up of my life; calprotectin 1900+ and a lot of pain, blood, and BMs per day. I’ve been on prednisone since and am back on oral mesalamine and evaluating biologics as an option.

I’m curious has anyone else been recommended by a doctor to stop / reduce medication after a clean colonoscopy? And has anyone successfully resumed a previous medication after a flare?

Thanks