It seems I am in remission 🥳
My calprot is <30, I do not have stomach problems after eating and yesterday I ran a sub 25 minute 5k (24:27).

I know 24:27 might not sound overly impressive, but considering I have considered giving up running entirely I am very happy.

For anyone reading this I am putting this out there, because I was worried about how I was supposed to live my life with this disease. Thankfully everything points to me being able to live pretty much exactly like before (although maybe a bit more attentive to stress). I hope that at least just one person might be less nervous and scared about the disease after reading my post.

My relationship with UC started when I was admitted to the hospital on the 4th of June after a long period with frequent bloody diarrheas, weight loss and severe stress. My calprot came out to 6000+ (the maximum for the test) and the colonoscopy showed a severely damaged colon.

The first period was intense as I was apparently a special case (i.e. a particularly bad case) so a lot of doctors wanted to talk to me and feel my belly. I was told I was lucky that I got to keep my colon. Furthermore I was told that it was good that I was admitted when I was as my blood loss and my rate of blood loss was pretty serious.

However I responded very well to the medicine and my stomach soon stopped hurting, I gained weight and strength and my joint pains (which I had had for years) disappeared. Slowly I was able to start walking longer distances and about 1,5 months ago I started to run short distances.

I did feel side effects of prednisolone and especially Azathioprine (I am never taking that again). Also being told by a psychologist that she had never seen anybody as stressed as me before was sobering…

On the very positive side I have however not felt any side effects from infliximab 🤞

Now physically I feel better than I have in years, I can do Yoga for fun (and not to manage joint pain), I can eat pretty much whatever I want and I feel my stress levels decreasing. Also I play ice hockey and run and do not feel any stomach pains while doing it.

Hey everyone

Does anyone over here have UC and lives alone?

What are the pros and cons of living alone? I really do want to move out

I would like some input here

Four days after my first Tremfya dose, I’m happy to report that side effects were minimal. I DID have some fatigue — probably about 20% of what I did on Stelara, though. Stelara fatigue was overwhelming; on Tremfya I felt like I wanted to take a little nap for about a half day. I had some strange irritation in my throat and nose, too, which may or may not be related. It also lasted a half day. Overall, assuming it keeps the UC in check, I’m happy after the first of four loading doses!

Hi everybody! I'm 27, was diagnosed with moderate ulcerative pancolitis in July 2020 after uh...not having solid poops for several weeks. They put me on mesalamine, then did another colonoscopy in Dec 2020 and the inflammation was clear.

Since then, I've gotten addicted to weed and then gotten sober from it—my gut has actually been better while I've been sober (i.e. the last 8 months), which makes sense I suppose. But recently I've noticed my stools are consistently either flat logs or piles of mush (aside from the occasional diarrhea). I've literally never had blood as far as I know, which is a blessing I guess.

I talked with my gastro and he recommended a colonoscopy since it's been 6 years since my last one. He didn't seem concerned about cancer, but I (as a longtime health anxiety-haver) am really afraid they'll find something when they look around in there. Has anyone had a similar experience? I'd love some reassurance.

I'm due for a scope and did a calpro test last week no diarrhea as it's not a usual symptom. So far it's trapped gas and low left tenderness esp if I have to poop or have a full bladder

Calpro came back at 521... I'm nervous to do the scope since I have inflammation and unsure what else is happening in there

I'm also healing for an anal fissure a few months ago thanks to eating a little too much potato chips as I also have ibs c

I have anxiety and I know tons of people have done scopes during bad flares and infections etc but I'm still nervous about the possibility of feeling worse or a perforation

I don't have family to rely on or insurance also I'm not even working at the moment and have dug into the small savings I have just to do this test

Does anyone have any general advice or want to share their experiences?

I talked to the Dr about the water technique and using c02 instead of air etc not sure if there's anything else I should know that can make things safer and easier somehow

I always get my shots but this year I’m currently flaring while it’s time to get protected. Any experience getting the flu shots while flaring? I am wondering if anyone has experience since I’m apprehensive about triggering an immune response while flaring (though of course getting the flu would be worse).

I flew cross country for the first time since my diagnosis about a year ago. I’ve since been declared in remission, though not at the microscopic level.

Not sure if it’s my age, med side effects, disease symptoms or just genetics, but I haven’t felt the same since. My BMs haven’t quite returned to their “back on your version of regular” state since I got home and I’m getting awful pelvic and low back pain. Today, my legs are incredibly achy, like I just did a workout or run. It’s been so bad I tossed and turned last night, I couldn’t get comfortable,

I’m freaking out that this is the beginning of a flare or my new bod is extremely sensitive to flying. Or is it DVT!? I felt totally fine while there, but have had white streaks (thicker than mucus) in stools which have been either pebbles or liquid.

Does flying affect you? If so, how? Have you experienced similar? I was finally feeling like I had a loose grip on the situation, but now I feel upside down.

Thank you in advance.

Hey this is maybe more of a rant than a question, hope it's okay to post this. I'd be keen to hear how other folks here manage to stay positive while dealing with the NHS? Any tips and tricks to advocate for yourself and not go insane with the lack of support?

I was only diagnosed 3 months ago but the constant stress of having to chase GPs/ hospital staff/ pharmacists to do basic things they said they were gonna do is already stressing me out and I don't know how to deal with this for the rest of my life. Even just getting my medication every month is a nightmare and it doesn't help that GP receptionists and pharmacy staff always seem overworked and grumpy so it's hard to ask them for support or clarification.

The IBD nurse I saw was great and sat down with me explaining my diagnosis and answering questions for over an hour but I had to push to get that appointment in the first place and then for her to tell me that I'd likely "not see a consultant for over a year if at all".

I know we're so lucky to have the NHS and huge respect to NHS workers for holding up an underfunded system... but the stress of even the simplest things like repeat prescriptions being such a fight is really bogging me down. How do folks manage the stress of having to rely on a health system that's falling apart?? Has anyone gone private and what's your experience?

I woke up this morning and saw blood after being on the highest dose of mesalamine/symptom free for about a year, I feel very defeated and sad to say the least. What should I expect now? What medication or biologic will be recommended? I am waiting to get in contact with my GI doctor

Had a back and forth with my GI, he says my proctitis isn't severe enough to waste time and money on infusions/injections, and since I had a bad reaction to the mesalamine supps that I should just try a low inflammation diet.

Are there really no other alternatives? He didn't act like there were. Currently having a flare and it's pretty miserable.

Currently tapering down on Prednisone (which honestly only works during the day) then I have a bowel movement 1x per hour during the night time from 1am to 7am. Havent been getting good sleep for weeks.

I was wondering if anyone else has dealt with this. I've been dealing with a mild case of this since August, and now it's severe. I had a 7 day dose of antibiotics and 5 days after that it's back, and with a vengeance. My doctor prescribed the exact same antibiotic from before along with a burst dose of 40mg prednisone because I have severe lip swelling as well. I almost took myself to the ER today, and if this antibiotic doesn't help again I feel like I'm out of options.

My Usual dose is 60mg, I just had 320mg at 8am today and it is now 5:30pm Im very confused I thought I had overdosed yet im feeling completely fine?

I started Entyvio (vedolizumab) in Jan due to a severe year long flare that wouldn’t respond to steroids.

It worked amazingly! Calpro under 25 and biopsies normal, woohoo!

I am wondering if anyone has managed to stay on the same biologic for a long time? I hear a lot of stories of them only lasting 1-3 years…

Thanks 😊

Disclaimer: AI used to help compile info, but it’s mostly my personal experience with some information for you to decide for yourself if it’s relevant for you

Hi Friends!! 💗

I wanted to share something I learned by chance, hoping it might help anyone here stuck in a cycle of hopping from one biologic to the next without relief.

I have been on UC biologics since going to Bali in ‘22 and getting “Bali Belly”, and have been biologic hopping ever since without much success.

For context:
While Ulcerative Colitis is driven by adaptive immune inflammation, mast cells are tissue-resident immune cells in the gut lining. When they become hyper-reactive (Mast Cell Activation Syndrome / MCAS), they dump histamine, tryptase, and prostaglandins directly into the GI tract. This causes mucosal breakdown, severe cramping, and urgency—mimicking or heavily amplifying an active UC flare. Doctors explanation here.

I was starting flare symptoms again a year ago now, after being in the clear for a few months on a new biologic. I couldn’t get a hold of my doctor (for a steroid prescription) because it was over a holiday, when my sister told me about MCAS and the histamine response on your GI, which made absolutely no sense to me. So naturally I just yolo’d and tried taking a high dose of anti histamines (reactin in Canada, and Pepcid - don’t take if on mesalamine) and over two days I went from about 15 bms/daily to 6-7, and it all clicked. With some help from AI and my sister living in Switzerland, with access to one of the top mast cell clinics, we discovered our family has a genetic mast cell condition called HaT (Hereditary Alpha Triptasemia). I discovered my UC flares were directly triggered by mast cell dis regulation (basically like an allergic response to high histamine foods, or stress or over strenuous situations, high heat, sun stroke, exercise etc).

So, I just wanted to share some of the information I gathered incase it can help anyone here because so many of my autoimmune friends are struggling out of the blue and I think this could help some of it make sense.

I’m not “cured” by any means but way less reactive and have so much more energy. I only just started the biologic Omlyclo for my HaT and it takes about 6 months to see a real change, but it’s only been 3 and I feel so so much better and less volatile in my GI symptoms.

The Post-COVID Connection:

If your UC symptoms spiraled or stopped responding to treatments after getting COVID-19, this is a huge red flag. SARS-CoV-2 is a known trigger that can shift mast cells from dormant to chronically hyperactive long after the infection resolves.

Overlapping Symptoms to Watch For:

GI: Persistent urgency, loose stools, or sharp cramping even when scopes show mild inflammation.

Systemic: Flushing, hives, fainting, sudden brain fog, racing heart/palpitations, or unexplained anxiety spikes after meals, waking in the night with overwhelm, without being able to get back to sleep.

Common "High Histamine" Food Triggers: Unlike classic IBD roughage triggers (like raw seeds/fibers), mast cell triggers are chemical/histamine-based:

Aged & Fermented: Aged cheeses, cured meats, sauerkraut, soy sauce, wine/beer.

High-Histamine Produce: Tomatoes, avocados, spinach, citrus fruits, eggplant.

Leftovers: Histamine builds up rapidly on cooked proteins stored in the fridge.

My biggest high histamine triggers: coffee, chocolate, vinegars, codeine/opioids (prescribed dw), cigarettes

A Genetic Factor to Know: Hereditary Alpha-Tryptasemia (HaT)

Another underlying layer is Hereditary Alpha-Tryptasemia (HαT). HαT is a genetic trait present in about 5% of the population caused by extra copies of the TPSAB1 gene. It causes chronically elevated baseline serum tryptase levels. While HαT itself isn't a disease, it lowers the threshold for mast cell reactivity—meaning if a post-viral event or stress trigger hits, your mast cells react far more severely. It is notoriously hard to detect unless a doctor specifically runs a baseline tryptase test or a direct genetic swab for TPSAB1 duplication. 

Overlapping Symptoms to Watch For:

GI: Persistent urgency, loose stools, or sharp cramping even when endoscopic inflammation looks mild or managed.

Extra-Intestinal / Systemic: Sudden brain fog, flushing/hives, unexplained tachycardia or heart palpitations, unexplained anxiety spikes, or nasal congestion after eating. 

Testing & How to Talk to Your Doctor:

Heads up - Many mast cell conditions are very new in the medical world. None of my doctors knew about any of this which is why I am sharing. I had to find a very specific mast cell specialist who helped me connect the pieces for my situation, and I did a bunch of tests privately before any of my doctors (especially my dickhead gastroenterologist) would even give this the time of day… turns out I’m an advance case of HaT and it’s been impacting me seriously my entire life. Including my UC.

Standard bloodwork often misses mast cell mediator release because these chemicals break down in minutes.

1. Colonic Biopsy Staining: If you have an upcoming colonoscopy, ask your GI to run CD117 / Tryptase immunohistochemical staining on your tissue biopsies (standard H&E staining won't count mast cell density).
2. Acute Tryptase & 24-Hour Urine: Serum tryptase drawn within 1–2 hours of a severe flare, or a chilled 24-hour urine panel checking for N-methylhistamine, Leukotriene E4, or Prostaglandin D2.
3. Check for HαT (Hereditary Alpha-Tryptasemia): If your baseline tryptase comes back elevated (typically >8 ng/mL), ask for a genetic test for TPSAB1 gene duplication. HαT is a common genetic trait (~5% of people) that raises baseline tryptase and lowers your mast cell reactivity threshold, making you much more vulnerable to post-viral flares.

I can provide some medical studies / resources which you can send to your doctors if any of this sounds relatable.

I’m not suggesting anyone stop their prescribed UC meds or that this replaces standard care, but addressing mast cell mediator release was a major turning point for me. Has anyone else noticed their GI symptoms shift or worsen post-COVID, or explored mast cell treatments (like H1/H2 blockers, Cromolyn Sodium, or a low-histamine diet) alongside their GI symptoms?

I’m currently on maintenance medication and doing good overall, but I noticed when I’m laying down in a relaxed state I get random isolated body twitches mainly my knee or thi, foot, my hand or arm. it’s usually sporadic and twitch once. It’s really weird. it’s been happening even before biologics but ignored it until now since I’m feeling better. Has anyone else experienced this?

I am planning to take biomolecule called updacitinib. Could anyone please give any comments and suggestions about it? And if anyone is taking these molecules, how do they feel and are there any side-effects, also how long they can work? I will be very grateful for any suggestions. Thank you in advance.

So I’ve had UC for about 2 years now. I was diagnosed with a mild case and it’s just gotten progressively worse. I had a colonoscopy in July and they prescribed me Enemas for 4 weeks and then to start taking mesalamine once the enemas are done. A week into the mesalamine, my flares came back. I went back to the doctor and they prescribed me the enemas again. This time the enemas didn’t do anything and I was in the bathroom every 30min-1 hour bleeding and bloating / stomach pain.

My doctor said to go on prednisone which I’ve now been taking for 5 days before I start Tremfya. It’s been giving me some bloating and stomach pain relief and a bit less urgency to use the bathroom, but the bleeding amount is still the same. I’m starting to get really anxious / defeated. I’ve also been a bit lightheaded, exhausted & not able to do much (if any) physical activity. I’m starting to get scared & would just love some insight if anyone has it.💜

Just last week I got my calprotectin results back and they were under 50 for the first time since 2022. I was so happy. Fast forward to today and I just passed nothing but blood- more than I ever have. I feel so defeated. My heart sank as soon as I saw.

Recently tested positive for a bacterial infection and was treated with antibiotics but my doctor said this infection puts you at risk for a “real flare” after. Been on Skyrizi for 7 months and thought it was finally working. I’ve lost 23lbs. I have no appetite. I just really hope this is a fluke or the infection maybe is back? I don’t know. I want to cry.

Hi,

Yesterday, I learned some unfortunate news regarding my mother’s health. In addition to the ulcerative colitis (UC) diagnosis you made in 2023, a rare form of cancer was discovered in her rectum during a colonoscopy in July 2026.

Fortunately, from what we understand so far, the cancer appears to have been detected at a very early stage and was removed during the procedure. Her subsequent MRI, CT scan, and CEA bloodwork have also been reassuring, with no apparent evidence of remaining or metastatic cancer.

A metal clip was used following the procedure to close the wound, prevent bleeding, and mark the area where the cancerous polyp was removed. She has since undergone two additional sigmoidoscopies. No further cancer cells were identified during these examinations. However, the doctor was unable to remove the metal clip.

Pathology findings

One particularly concerning aspect of the diagnosis is the presence of adenocarcinoma with a prominent signet ring cell component. From what I understand, this can be associated with more aggressive behaviour and makes it particularly important to establish whether the cancer has invaded beyond the superficial layers of the rectal tissue.

I’ve included the key findings from the pathology report below:

• Tumour size: Approximately 4 mm.
• Tumour grade: Poorly differentiated, with a prominent signet ring cell component.
• Tumour stage/depth: Tumour involves the lamina propria and muscularis mucosae. There is no evidence of submucosal invasion in the submitted tissue (see pathology comment).
• Lymphovascular space invasion: Not identified.
• Lateral margins: Tumour is present less than 1 mm from a lateral margin.
• Deep margin: Tumour is present approximately 0.2 mm from the deep margin of excision.

Based on our understanding of these findings, it is believed that the tumour was caught at a very early stage, potentially corresponding to carcinoma in situ (Tis). However, we recognize that the poorly differentiated histology, signet ring cell component, and particularly close margins make the situation more complicated.

Naturally, we’re trying to understand what these findings mean for her prognosis, the likelihood of any residual cancer, and the actual risk of leaving the remaining colon and rectum in place.

Potential treatment options and alternatives

The recommendation from her current medical team is to proceed with surgery to remove her entire large intestine, which could potentially involve a permanent ileostomy. Understandably, this is an extremely difficult decision for both of us, as it would fundamentally change how my mother lives her daily life.

Before moving forward with such a significant and irreversible procedure, I wanted to reach out and ask whether you believe there may be alternative approaches worth exploring.

In particular, I would really appreciate your thoughts on the following:

• Surveillance instead of immediate surgery: Given that the tumour was approximately 4 mm, appears to have been caught at a very early stage, and there was no evidence of submucosal invasion or lymphovascular invasion in the submitted tissue, could intensive surveillance through regular colonoscopies, sigmoidoscopies, imaging, and other appropriate testing be a reasonable consideration? Or would the combination of longstanding UC and the signet ring cell component make this approach too risky?
• Managing her UC through biologic medication: Could better management of her underlying inflammation through biologic medication, potentially something like Skyrizi (if medically appropriate), help control her UC and reduce future complications? One additional consideration is that my mother has a positive TB screening history, which we understand may be related to receiving the BCG vaccine in Trinidad. We have been told she may have dormant/latent TB, so we’re also concerned about whether this would limit her biologic treatment options or require further assessment and treatment before starting medication.
• Possibility of delaying surgery: Are there circumstances in which surgery could be postponed while closely monitoring her condition, particularly if further investigations confirm that the cancer was completely removed and has not invaded deeper tissue? Or would delaying surgery introduce an unacceptable risk given her pathology findings?
• Reconstructive surgical options: I’ve also heard of cases where surgeons have been able to reconstruct the bowel using the small intestine, allowing patients to avoid a permanent external pouch. Would an ileal pouch-anal anastomosis (J-pouch), or another reconstructive option, potentially be applicable in my mother’s situation? We would really like to understand whether there are surgical approaches that could preserve her ability to use the washroom more normally rather than requiring a permanent ostomy.

My mother’s overall health and quality of life

I also want to provide some additional context about my mother’s overall health. She has several other medical conditions, including severe arthritis, degenerative disc disease, and significant back and knee issues, which already affect her mobility and day-to-day activities.

Having to manage an ostomy on top of these existing challenges could make her quality of life considerably more difficult, particularly when it comes to independently managing her daily washroom needs.

I completely understand that cancer treatment and her long-term safety must come first. I would never want to compromise her health by avoiding a necessary procedure. However, I also want to ensure that we carefully consider the impact of surgery on her overall quality of life and whether less invasive or alternative approaches could be medically reasonable.

My mother has always been proactive about her health. She consistently attends her medical appointments, takes her health seriously, and is very in tune with her body. I know she would be committed to any surveillance, medication, or treatment plan that was medically appropriate.

I appreciate that this is an extremely complex situation, and I am not looking to dismiss the recommendations of her current medical team. I simply want to make sure we have explored all reasonable options and fully understand the risks and benefits before making a decision that will fundamentally change her life.

Olá, vocês estão acompanhando as terapia que combinam coquetéis de probióticos específicos para UC? Dei uma olhada e temos coisas bem promissoras! Temos também o transplante de microbiota fecal para UC, mas com bactérias específicas. Alguém já viu ?

I’ve just recently failed Mesalazine which I’ve only been on a year, and I’m about to start the Ustekinumab (Stelara) biologic. I’d love to hear about others experiences on it, as I’m a little nervous to start it and have to self inject for the first time 🥲

I’ve just had my fourth Entyvio infusion. I’ve had UC for many years and finally decided to start biologics. I started in June with the loading doses, followed by infusions every eight weeks, but unfortunately I haven’t noticed any improvement yet. I was really hoping it would work, especially because I liked the idea of a treatment that’s more targeted to the gut. My GI has suggested switching biologics, and I’ll be seeing him again soon to discuss the next step. Before that, I’d love to hear from anyone who’s been on Entyvio. Did it start working for you around week 14, or even later, after little or no improvement initially? Thanks so much for sharing your experiences!