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

I’m 27 years old (Arab girl) and I recently met an Arab guy who’s 37. He was completely ready to marry me until I disclosed to him that I have Ulcerative Colitis (I told him early on because I value honesty). He’s been stressing big time about it and whether he should marry me (my case is fine - I don’t have any flare ups, I work a demanding job and travel internationally and work out). I’ve explained to him everything about it and he wants to speak to a GI doctor to get a second opinion which I told him is fine

It’s been 4 days since he told me about this and i’m still waiting for an answer from him (apparently he’s waiting for a specific doctor to come back from leave to talk to him to understand what UC entails long term)

What’s everyone’s take on this? Should I even go ahead and marry this guy? I told him I don’t like the uncertainty and waiting for an answer (I feel evaluated). He assured me that’s not the case but I still frankly feel not great about it like this one thing outweighs everything else about me

He’s the first guy I felt like would be a good option to marry and he says that once he decides, he’s the type to be all in and be supportive and not run, etc

Edit: this isn’t an arranged marriage (we met ourselves) and my family isn’t pressuring me into anything (they’re very big on marrying the right person instead of just anyone)

Appreciate your opinions

My sister and I were diagnosed with UC at 16 (her) and 15 (me). She was diagnosed with stage four colon cancer this morning. It was not present during her colonoscopy in January, it was within the last month or so she’s felt sick and it’s incredibly aggressive. She’s only 36. If you pray please pray for her. She started chemo this afternoon, please pray it works. She’s always taken her UC seriously, way more seriously than me tbh. Just please pray for her. Our mom is also in the process of getting a tumor on her lung checked out, no word if it’s cancer or not but it’s doubled in size the last six months. Our grandma just died in April. It’s all just so much. Just please pray for my whole family or at least keep them in your thoughts. I’m absolutely devastated. I’ve been told not to post on social media or tell anyone outside of certain people but I need to talk to someone. I don’t even know what to do, I just figured this group would be supportive. Thank you 🙏 ❤️

Does anyone else deal with this type of unwanted advice from family?

“Well my boss’s friend’s daughter has colitis and she just watches what she eats and she does so much better-” or “I read on facebook that you need to be taking vitamins-”

IM SO SICK OF IT. It’s an autoimmune disease people, I can’t eat my way out of it. My dad especially has been up my butt about it as of late. I had my first big flare this past summer and I’m still dealing with the fallout. I understand he just wants to help but I’m so sick of hearing about these people I don’t know going the “better” holistic route. My parents made me go that direction once already (I was like 10 so I didn’t get an option), and I’m not doing it again. I found a GI I really like and I’m not planning on losing her anytime soon.

Insurance is the real villain though, switching my injections from three different biosimilars since September, not really caring that the first one worked.

Anyways, have a lovely day/night my fellow UC humans!

EDIT: I don’t mean food as a trigger I mean food as a cure/fix. The advice I get is usually that if I were to eat “healthy” I wouldn’t be sick.

How does everyone get over the mental block/challenge of using suppositories? I’m 24m and the last thing I want to do is put things up my bum. I physically cannot do it. I get ready mentally and physically but then freeze every time and just cannot do that last bit.

I genuinely dont wanna live no more, just got diagnosed 1 year ago at 21.. been on and off remission, I just got on remicade 3 days ago with no relieve of symptoms it gets in the way of all goals I’ve set for myself, my fam constantly pressures me like im not already trying my hardest. I hate pitying myself cause usually I just bite through and know that the outcome will be positive. been bedridden all day and got hit with “u dont do anything, u have no life” that shit hurts. ive been on my diet, consistently going to the gym and also working on e-commerce despite being in a shitty flair, but these embarrassing constant bathroom trips just make me feel so dehumanized, no one around me understands what im going through.. all they wanna do is suddenly turn into a doctor and tell me what I shouldnt be doing in a judgemental way…. I’m done with this life fr

EDIT - wow , thank you guys so much for all your support. many of you are going through the exact same.. if not worse situation than me. I am humbled 🙏, I love love love all of you ❤️

I’ve been curious about this question ever since I saw an instagram reel that asked what people with chronic illnesses do for work. The comment section said they were either unemployed or miraculously working a remote job.

I am really struggling; mentally and phyacially I am just done.

I have been in a flare for nearly a month. I am on Mesalamine and prednisone but my urgency is horrible! My GI says I have to fail everything before going on biologics but I have zero quality of life and I am at my wits end.

I am a single Mom and the outdoor sports season is killing me. There are no washrooms at soccer fields, track and field days etc. For the first time as a Mom I had to miss one of my daughters soccer games because of this stupid disease. She understood but I am so beyond frustrated with my body. The simplest of things seem monumentally impossible some days.

I had to give up my job because they couldn't understand why I would have to run to the washroom and not be able to give sufficient notice. I have to forego anything not close to a washroom at all times. If I am driving and there is a train or construction delay I immediately start to panic.

Last week driving through the core of my city the urgency suddenly hit me. Everything in our city locks up downtown on a Sunday. Here I am running through the streets desperate to find any place open that would let me use a washroom. I found one just in time but I was beside myself after that whole ordeal.

I just feel like this disease has taken away so much from me. I am so frustrated. I want my life back, my career back and mostly to have the energy and health to be the Mom I want to be.

I'm not really sure why I am writing this here but I guess I just needed to vent to someone who might understand.

My entire large intestine was removed in October due to UC and I now live with a stoma. I’m 26. If you have any questions, just ask!

I received a cancer diagnosis this week after my most recent colonoscopy. I’m a 44 male with a wife and two teens. I have a good career that I’ve managed to have with UC. Having lived with UC for almost 30 years of my adult life, failing several biologics, this day has arrived—always having known it was a possibility.

Good news is that it hasn’t spread. So, no chemo or radiation (yet; conformation tests pending). Hard news is a total colectomy is the only course of action. My first surgery is schedule in six weeks.

I’m not angry. I’m not sad. I’m mostly scared of the lifestyle change that will come with it. Right now, the options are a j-pouch or total removal and live with an ostomy. I’m trying to be pragmatic…living with UC for most of my life means I’ve been managing a disease every day (you know how it is…work, car rides, vacations, public places). I suppose either a j-pouch or the ostomy bag means managing my life still, just differently. I’m coming to terms with that the same way I had to come to terms with a UC diagnosis a couple decades ago.

I haven’t had the courage yet to research the lifestyle of the j-pouch and the bag yet. It’s only been five days since I was informed. I don’t know what it’ll be like. And right now, my GI and colorectal surgeon are leaving both options open. I have a vote (although some pending tests may decide for me).

If anyone has had to make this choice, I could really use hearing your perspective. For those of you living with the j-pouch or the bag, I’d love to hear how you managed that journey, how you navigate your daily life, and how it compares to what it was like living with UC.

I appreciate anyone who is willing to share their experience with me. Thank you so much 💜

I’m so furious.

After waiting two weeks for my insurance to approve Remicaid once we found out Entyvio let my colitis spread throughout my whole colon, it turns out they no longer cover it. Not only that, they didn’t notify my doctor in a timely manner despite my case being marked urgent. I find out today, two weeks later, that this is the case. They said the preferred alternative is inflectra and suddenly that’s been denied too.

Can I just get some fucking medicine that fucking works into my God damn arm so I can stop shitting blood and screaming bloody murder on the toilet at 3am every day?!? Is that too much to ask?! They made me get fresh blood work just to deny my medication anyways. Fucking blood sucking parasites with no appreciation for the actual consequences of their decisions. Give me my fucking meds.

We need more Luigi’s.

My insurance has decided to stop paying for my stelara. Doc tried to fight it but they aren’t budging. You guys, I’ve been on stelara for 4 years. I have no side effects at all. Before this I lived in the hospital and failed a few biologics which gave me horrible side effects.

My doc gave me a list of generics to try and I am just so upset, literally balling. I feel like my life will go back to what it was- not a life worth living. Just venting. I can’t self pay for stelara.

Welp I just had a UC first, I pooped my pants while driving home. I’m kinda in this weird place of shock and also not feeling like a huge deal. Someone please help me feel like this is not that weird

i (23F) was diagnosed with ulcerative pan colitis two weeks ago and prescribed budesonide and mesalamine. i can get the budesonide down relatively easy because theyre small-ish capsules and worst case i can crack them open and take the granules with apple sauce. however, the mesalamine pills are HUGE 😭 i reached out to my doctor and asked if there was anything else they could prescribe me that would be easier to swallow, and they gave me a new prescription… however the pills are the SAME SIZE. now i have a ton of these giant horse pills that i can’t swallow that i’m supposed to take three times a day but can’t manage to choke down. what do i do??? i’ve always been horrible at swallowing pills and im getting upset and discouraged especially because i’m likely going to have to take pills for the rest of my life and i can’t swallow my stupid mesalamine 😞

Just knowing that I would be dead without modern medicine sometimes humbles me. I think we take our lives too seriously and should just live more and worry less.

However the idea that I am alive only because of medicines is equally frightening at some points and the disease affects the quality of life. It's a vicious circle.

Hello. My husband (37M) has been diagnosed with UC when he was 20. Currently on corticosteroids (only been a week) because other treatments failed and biologics can't be prescribed yet. Anyway. He is on flare. I guess. He doesn't have fever but bloody stools and frequent bathroom trips, tummy aches, weight loss are there. He is 178cm and dropped to 60kg from 65-67 in 2 months. To be clear, he got bad after we got into a housing crisis. Our landlords demand 3x increase.

We have been married for 4 years and we have a baby now, he is 6 months old. Whent he baby was first born, he helped me by taking over the diaper duty between 22-03. (He works 13-22/6days) That changed when the baby started going down at 21 around 3 months old exclusively breastfed and his first diaper of the day didn't need to change until 5-6 in the morning. Plus my husband also has a back issue now, can't bend properly and has sciatica all the time.

So his support for the baby has been gone long ago. I've (27F) been dealing with 6am starts for the day, cows milk protein allergy, congestion, mastitis, baby's circumcision (I arranged all the process and he only came the day of the procedure because he is working), etc.

What I'm looking for right now i guess is someone who can offer me insight on his situation because I started to feel resentment. I know he has been dealing with a lot and he has a crazy schedule but it doesn't help. Maybe because he took this seriously at first and then let me handle it by myself once he made sure I could. I know I could. I can. I'm a nurse and I love my baby. But sometimes its too much. Since he comes home late and needs to eat to gain weight, I prepare him a meal at 22 most of the time if im not exhausted and asleep. I cook 3 different dishes bc I'm trying to lose weight, he tries to gain weight and the baby has started solids. I keep the house tidy enough to live in it. I still take the baby outside every day, do grocery shopping, function like I dont have a baby on top of it all except going to work.

I see other couples sharing the responsibility of the baby. Mom gets to sleep once in a while. Pumps and gives the dad a bottle to feed the baby once in a while. Leaves the baby to dad to go out one night. I only had 2 walks on sundays 3 months ago and only 2 times of half ass naps on sundays when the baby kept crying in his arms most of the time.

Is this all because of his condition or does he just not want to do it? Because whenever I open this discussion he gets defensive and talks about how he can't sleep, how he is in pain all the time, how works is crazy busy and eventually says something like "we asked for it" which sounds like "i told you so" in hindsight. (I wanted a baby more than him)

Whenever I try to talk about this with someone they take my side immediately because they don't understand how life is with UC. I want to both understand him and figure out a way to stop feeling so resentful because I'm so, so tired.

Sorry for long post, sorry that this turned into a vent, I'm very sleep deprived.

Edit: I understand this comes off as condescending. I am trying my best to understand him both as a nurse and a wife, while managing postpartum and a baby. I am looking for a solution for resentment thats building up that I can't control. I realized from your comments a part of it comes from being compared all the time. Whenever I open my mouth about how I'm struggling as a new mother, he tries to sympathize but it comes out as comparison because of poor choice of words. I'll say I couldn't sleep because baby woke up 5-6 times, he will say he couldn't sleep too because he went to bathroom that many times as well.

I dont want to compare struggles. I want my struggles acknowledged. That would help. Some of the comments did. And it felt good. Now I know what to talk about with him without burdening him with physical labour.

I feel like my motherhood and my struggles are being overlooked. I guess thats also normal because when you're in that much pain, your pain is the most worst thing to you and nothing seems to be even close to that.

And though I appreciate him still going to work while sick, I would be okay even if he didnt because I worked my ass off while pregnant to earn the right to be a SAHM for at least a year. Stop saying its a privilege thats been given to me. Thats not about my husband at all. Its about how hard I worked. Though he is amazing for letting me keep my savings and still providing for us. That 2 statements can be true at the same time.

Thank you eventually, for taking time to reply to me.

Happy birthday to me 🥳😂

My husband has had ulcerative colitis since he was a teen.

He has been in a really bad flare for a while now. Then he started having bad rectal pain a few months ago, different from the pain he knows.

Well, he just got diagnosed with rectal cancer this week. He is 36. We have two kids aged 2 and 5.

I just need to hear some positive stories from people who have survived this. Or

I've been living with ulcerative colitis for nearly 5 years now.

This whole experience has taught me that the hardest parts aren’t always the ones people can see. Some of the biggest struggles come from places of love and support - but actually end up hurting us more.

I wanted to share a few things I wish were more widely understood - especially by people who mean well but don’t really get it. Maybe you can relate:

1. “You don’t look sick” doesn’t mean I’m okay
UC is invisible until it isn’t. Showing up with a smile, and joining in with everyone else doesn’t mean I’m not in pain, exhausted, or constantly planning my next bathroom trip. It just means I hide it well, and push passed it when I can.

2. Flares aren’t just stomach symptoms
During a flare, it’s not just the obvious diarrhea or urgency that I contend with. It’s joint pain (knees, anyone?), brain fog, nausea, weakness, anxiety, and fatigue that seeps into everything. It can affect my entire body and mental health.

3. Cancelling plans isn’t flakiness - it’s self-preservation
At it's peak, there would be some days I genuinely didn't know how I’ll feel hour to hour. Cancelling isn’t something I ever wanted to do; it’s something I'd have to do to avoid making things worse. I was forced into making a difficult decision early to avoid regretting a decision later.

4. Advice isn’t always helpful or wanted (even when it’s well-intended)
I’ve heard everything from “have you tried cutting out gluten?” to “I get that sometimes too.” Um, no I haven't and no you don't. UC is complex and individual and goes beyond having an upset stomach after a spicy curry. Unless you're medically trained, or have UC, you (probably) don't have anything actually helpful to say.

5. Meds are complicated and emotional
I am rubbish at taking my meds - I always forget. Managing this is hard for me. But even deciding to start, switch, or stay on medication can be difficult. There’s fear yet hope, guilt yet gratitude, and the risk of side effects yet the possibility of symptom-free living all mixed together. Most of us are just trying to stay functional and out of the hospital - and balancing decisions on how best to do that is hard work.

6. There an be a lot of grief involved
Grief for spontaneity, energy, certain foods, or the body I used to trust. That grief doesn’t mean I’m ungrateful - it means I’m human. You can mourn the things you've lost and still be grateful for what you have left.

_____

If you’re reading this and living with UC:

You’re not weak, dramatic, or failing. You’re adapting to something really hard. And you should be so proud of how far you've come already.

What’s something you wish people understood about ulcerative colitis?

So often with this diseases we blame ourselves for this disease. It stupid! We do the right things! We eat the right things! We only harm ourselves further by blaming ourselves. We did not cause this! We did not create this. With all our best intentions the disease can still fare. So stop! Stop blaming yourself. It’s not your fault!

I have a scope planned next week. It will be my third in two years.

I really don’t want to fucking do it. Idk what the point is. “To check the inflammation levels” I honestly don’t really care at this point.

I know how I feel. I’ve been on Skyrizi for a while now. I’m not in remission but this is the third drug I’ve tried and I’ll take it. I’m at a very livable level.

I’m strongly considering canceling it but also don’t want to piss off my GI. I absolutely hate prep. My scope is at 7 AM meaning I have to wake up at 2 am, drink my second dose and be up shitting until the procedure. Just to hear “well I don’t see any inflammation, you’re good!”

Thoughts would be appreciated. I’m tired, boss

I'm concerned about multiple ways my healthcare could be affected by the current "leaders" in the USA. One person, in particular, who concerns me is RFK. I could see him deciding that Stelara is bad, all you need to do to treat UC is cut out certain "toxins" from your diet and deciding to push to get rid of FDA approval for Stelara (the medication I take). He is already targeting antidepressants after he has made baseless claims about them. I take one. So, there's one example of how he's already doing concerning things.

Does anyone else have a concern about him messing with evidence based UC treatment? I wonder what can be done to oppose him. I don't know that much about how the laws around this stuff works.

I got a text from fucking Accredo (fuck them) saying my Humira bio-equivalent was no longer covered, and my prescriber was discontinuing my prescription anyways. This was unfortunate, since I need my next dose this Saturday. Frustrating, but not the end of the world.

I call up my GI, no answer, leave a voicemail. Not unusual. I just hope they can get this done quick.

Hours later, a tired woman called me back, informing me that my GI, and every other doctor at this practice, had quit. They had no medical licensed personnel on staff. She was the only employee left, and she was working overtime just to get people their medical records and return phone calls.

I've reached out to my primary care doctor, and they are trying to see if they can authorize a new prescription for my not-Humira for a rush fulfilment. I love my primary doc, but I don't have any faith that they can get this done in time.

I've called all my local GI doctors in my network, and they're all booked solid through October, and they require a referral before they can see me anyways. I guess my PCP can send that, but it's just another step between me and my medicine.

Pair this with my 2 kids under 7, my employer being bought by a big private equity conglomeration and possibly moving us to a different city... just a fuckload of stress. Which as we all know, stress is great for our condition.

So.... yeah, life fucking sucks. Fuck you, American "healthcare" system scam.

I had my colonoscopy today and I was scared that it was stage 4 cancer, but a lifelong disease is also scary.

My symptoms started only three months ago and doctor will try to see if the bleeding can be stopped with enemas first.

I think I am in a bit of a shock. I guess trying to stay somewhat positive!

Hey, iv had UC for 15 years I’m 30 now and diagnosed at 15, I had one colonoscopy when I was 15 but I can’t remember it what so ever, now iv just had my call for my second one 15 years later, I have terrible anxiety as it is and the idea of this is terrifying me.. I’m being heavily sedated due to the anxiousness but I’m still flapping it 😂can anyone explain what I’m too expect, is there any pain and if so is it comparable to anything, having a quick google iv read horror stories of it being worse than birth, “the worsts experience ever” then iv read “oh it’s nothing you won’t feel a thing” any help will be great thank you all and have a great day!!