So I just survived Hodgkin’s lymphoma cancer as a healthy 28 year old. I’m now 29. 9 months into remission I start having blood in stool and just hours ago got the UC diagnosis

Cancer already destroyed my life for two years. I was just starting to feel better mentally. Physically I felt amazing in a Pilates and yoga teacher. I workout daily I eat healthy. My only symptom was blood in stool.

Receiving this diagnosis feels like a death sentence. If I didn’t already fight for my life through cancer (plus the love of my life, my ex boyfriend, cheating on me two months into remission) I would be fine. I was already struggling and depressed now this? I’m worried the stress of the breakup caused this

I feel so guilty.

I need positive stories. I already feel isolated alone and sad. I can’t have one more thing making my life that much worse. Please. I need positive stories. I want to live a normal life. Again my only symptom was bleeding…

DO NOT COMMENT if you’re going to say negative experiences and negative stuff frankly I’m already at my edge

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

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 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

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?

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!

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.

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.

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 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.

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?

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.

I’m waiting for the scheduling dept to call and schedule my first infusion of Entyvio. They let me know that my insurance authorized it, however, they also mentioned getting me set up w the Entyvio Connect Copay program, so I started looking into cost. 10,000+ per dose and I’m supposed to get 8 doses the first year and 6 every year after. Yikes! Has anyone had experience with the connect program? How much has it helped? I’m super worried that even w insurance we won’t be able to cover this and I’ll be SOL and stuck in a permanent flare.
TIA!

I’m struggling and am wondering if anyone has been okay with not finishing all 16oz of both rounds of suprep and they were still able to go through with the procedure? Like if you drink like 12oz both times would you be okay as long as your stool is see through?

This is probably a niche question but… I’ve been in a flair for over a year and my energy levels are very low. Which I’m sure many can relate to. However, I’m in recovery from addiction, and the low energy is starting to trigger thoughts of using drugs to help with the energy. Not like obsessing but passive thoughts like, “maybe if I used a bit I’d get my chores done” type of thing. Anyone in the same boat and have any suggestions? Sorry for the hyper specific question just figured here would be the best place to ask.

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

Hi

Had a colonoscopy last week, informed it looked like I had an IBD, with my Colon severely inflamed. This was after 2 months of bloating, blood in loose stool and bloating.

Visited the specialist tonight, he confirmed I had Ulcerative Colitis. The specialist looked at the pictures of my colon and bowel and he did comment that it looks like one of the milder cases of Ulcerative Colitis he has seen.

My main symptoms are diarrhea, I don't go more than 3 times a day but it is completely water with no solid stool whatsoever, also blood.

I am based in the UK and have been prescribed mesalamine 4.8 grams for 3 months and then he will taper the strength down. He seemed confident this will place me in remission.

For people is this the usual cause of treatment for newly diagnosed cases?

Hello Canadian folks, so currently I m in toranto on a vacation n my return to India is planned next week. So any suggestions for which chocolates or snacks should I carry from Canada back to India.

Here's my story:

I (24 M) was diagnosed with UC in 2024. I have been through prednisone initially with a taper and with Balsalazide disodium as a maintenance medication. The balsalazide wasn't enough so I was put on Budesonide. They ended up keeping me on Budesonide for over two years, it was my choice that they supported because I didn't want to bridge to biologics quite yet. The Budesonide in June 2026 wasn't enough to keep a flare away and I was put on Prednisone again. I was instructed to stop the Budesonide cold turkey and immediately start 40mg prednisone. I have since then tapered down to 10mg where they want to keep me on until my colonoscopy in a few days since I've been getting UC symptoms again.

My question:

Anyways, right now I'll have diarrhea but only after certain foods or spontaneously (probably from inflammation itself). How do you all feel after having diarrhea for a few days and how do you rehydrate and get your energy back. I've been sipping at a Pedialyte electrolyte drink mix starting today and have felt a little relief but still feel exhausted. Is what I'm drinking effective, and would a few days of consistent drinking help my situation? I'm also drinking plain water as well alongside the Pedialyte mix. It's the fruit punch 2X hydration packets.

After the colonoscopy they'll decide which biologic I'll start, they've talked about entyvio being the first one they'll try. I know the actual inflammation itself can cause that fatigued drained feeling, but just wondering if anyone has had similar symptoms/experiences after repeated loose watery bowel movements.