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 know this is a sign for me to log off IG but it is so discouraging that unfortunately social media is breeding a culture of misconceptions around our disease so many reels because I searched for Ulcerative colitis in the search bar when you get all these videos about fake doctors or people with UC healing with diet and a bunch of nonsense such as parasites etc. Whereas I type one diabetes, not a single thing about curing it with food or blaming diet. I wish people understood that this is not something you can cure or make yourself go into remission to with food and herbs or parasit cleanse…our disease is just as valid as any other that requires medication .
Is it normal to have an injection site reaction that is 8” in diameter and growing?
I left the Tremfya out for 30 mins before my injection last night, took Benadryl an hour before the injection, and applied hydrocortisone cream right after, and again this morning. Despite these measures, the skin is red, warm, itchy (I’m trying not to scratch!) and raised compared to surrounding skin.
For background, this is my third and final loading dose for Tremfya (so two shots); I reacted similarly to the first two, but this rash is much larger. I’ve taken three other biologics and a biosimilar without any issues in the past 11 years.
Has this happened to anyone? Did it get better? Or did you have to switch medications? I only see pics online from people with other autoimmune diseases, not UC or Crohn’s. Help.
I FINALLY MADE IT TO MY FIRST INFUSION!!!!! AFTER THE WORST SUMMER OF MY LIFE I SEE THE LIGHT AT THE END OF THE TUNNEL FINALLY! SAVE ME INFLIXIMAB SAVE ME! As excited as I am I’m still a little nervous for some reason, my biggest hope is it works fast because I’m starting to forget what it felt like to ever feel normal lol
i have ulcerative colitis and was wondering if anyone else with UC has experience with taking recreational drugs at festivals. i’m trying to understand whether there are any particular risks with UC or things i should be aware of especially regarding dehydration flare ups or medication interactions. any personal experiences or advice would be appreciated. I usually take mdma and ketamine.
I know It’s sounds irresponsible, but festivals and raving is apart of my life, and i love when me and my friends are all fucked up together. I don’t take mdma or ketamine often, only during festival season.
My sister found out today that she will be getting her large intestine and colon removed tomorrow. She wasn’t blindsided, just hoping it wouldn’t have to happen. This is one of many, many medical issues she has had to face. I struggle to be there emotionally for people, but I can only imagine how difficult of a fine she is going to have, and I want to be there for her as much as I can as someone who doesn’t really know a lot about this. I looked on Google and was given advice about helping after surgery with picking things up, moving items so she won’t have to bend down, making sure the things she uses are close by, encouraging and participating in slow exercise introduction (I have a vegetable garden, I was thinking of offering to walk with her around the yard to see them when she can start walking?). I guess I just feel really bad for her, she’s gone through a lot and I want to do the little I can to ease the hardship of this whole thing.
Anyone else find that despite being in deep remission, you’re still more tired/tired more easily than you did pre-UC? My BM are the absolute least of my worries nowadays. I’m more regular than I’ve been in ten years and have zero food sensitivities. I’ll have been on Tremfya for a year in November and had deep remission confirmed this past June. I’m just so tired all the time. And I wipe out so easily. Anyone else? It’s so interesting to me that there can be no evidence of disease, but I’m still so fatigued. Is it the medicine? My body still working overtime?
i’m back in the hospital due to malnutrition and a bmi of 15, and they wanna do TPN for me but i’ve never seen or heard of it before. anybody been thru this?
Hey guys im about to start an injection for Skyrizi tomorrow, has this been helpful to anyone? Have you seen improvements? I had mesalamine before but unfortunately it doesnt help my UC anymore. Just wanted to know if Skyrizi has been helpful to you guys.
Diagnosed via colonoscopy/biopsy yesterday with ulcerative proctitis. Fairly mild symptoms right now - lots of blood and mucus in stool, some urgency/frequency. Starting mesalamine suppositories. I have no idea what to expect. I just finished medical school and started residency a month ago. Residency is known to be extremely demanding hours with very little sleep (80-100 weeks, lots of 36 hour shifts). Im hundreds of thousands of dollars in debt from medical school and now I’m terrified that UC will keep me from finishing residency and starting practice to pay off loans (not to mention being able to work in the field I love and have worked so hard to get to). I don’t know what to tell my program. My family keeps telling me how relieved they are because they were all worried I had cancer and ChatGPT told them this is “manageable” (try not to roll your eyes too hard). I know that nobody’s experiences are the same and it’s difficult to say what my prognosis/experience will be but any words of wisdom would be much appreciated.
I’m in a situation where I currently have a long commute. I need to buy bathroom time and was thinking of taking Imodium. But I don’t know if I can just rely on it longterm. I am on infliximab but the sudden urge to go still strikes.
went to my drs appt. knew something was wrong. had a million and one questions and the first thing the dr says to me is "i am admitting you to the hospital" and sends me up the hill to the hospital where she called the Gastro team and had them take care of me. been here three days. failed infliximab. starting Rinvoq. i can not take pills to save my life. im scared. im vomiting blood. im crapping blood. im on so many steroids in my iv. my bp was 76/52 ish something like that. its better now. i ate a meal. getting a partial colonoscopy tomorrow. im tired of getting bugged by my nurses for meds and vitals. i just want to sleep. i am so tired of being strong and sometimes i really just want to wallow. but if im not strong i will not heal. im so tired. im so tired.
Hi everyone.
I was diagnosed with Crohn’s at 12, but had no symptoms for years. At 26, extremely low hemoglobin led to a diagnosis of stage I colon cancer, which thankfully only required surgery.
Now my follow-up colonoscopy shows my entire colon is inflamed, so my doctor thinks it may actually be colitis. (what they saw during the colonoscopy looked more typical of colitis than Crohn’s).
I’m waiting for an MR, and today I was also told I have PSC. I may need biologics for life.
I feel completely overwhelmed. I’m only 26 and it feels like I survived one serious illness just to end up with several lifelong ones.
I also have social anxiety, and I’m scared I’ll never be able to go out and drink normally again. Finding a partner was already difficult, and now I wonder who would want someone with this many health problems who could potentially die young. Maybe I should just give up on relationships too.
I’m not really sure what I want from this post. My friends are very supportive, but they haven’t had to go through even half of what I have, so I guess I just want to hear from people who actually understand. Does life eventually feel normal again? How do you cope with all of this?
I’m newly diagnosed with ulcerative colitis and still trying to figure out what my “normal” is.
I was first diagnosed in April with left-sided colitis/proctosigmoiditis. I wasn’t taking any medication from April through June, and when I ended up in the hospital in June (I went myself because bleeding came back). Went through so many GI doctors from June to now.
my colonoscopy showed that the inflammation was limited to just the rectum/proctitis.
I’m now taking oral mesalamine, mesalamine suppositories, and mesalamine rectal suspension.
At this point, I feel really good. I have normal, formed bowel movements usually once every morning, and occasionally I’ll go again after I get home from the gym. I don’t have diarrhea, urgency, abdominal pain, or frequent bowel movements.
My biggest issue right now is that I’ve become OBSESSED with checking my stool for blood. I’m talking about literally inspecting it and even touching/breaking apart my stool looking for the slightest hint of red. If I see even the tiniest speck or slightly reddish area, I immediately start wondering if I’m flaring.
For those of you who have been dealing with UC longer: how do you actually know when you’re in remission? Do you eventually stop analyzing every single bowel movement? Can you still occasionally see a tiny speck of red and be doing well?
My doctor wants me to stick with Mesalamine before going on a biologic which I wanted to originally do in June. I am doing a calprotectin sometime in September (my Drs order) and we’ll go from there. My new IBD specialist said my case is strange and usually pushes for biologics but because of the healing from April-June without medication he wants to do another colonoscopy in October.
I’m leaving for my honeymoon in 2 days, and mentally this has really been taking a toll on me. I want to enjoy my trip instead of analyzing every bowel movement and convincing myself something is wrong. I’d really appreciate hearing how other people learned to trust their bodies again after being newly diagnosed.
I got on prednisone a week ago, a low dose because I had taken laxatives for constipation, which I think caused diarrhea. I also had a bad fissure from said constipation but because I'm switching to a biosimilar drug I thought it was a flare up. Now everytime I go to the bathroom I compulsively check my shit for blood, regardless of how small. To the point where I'm agonizing for like ten minutes over some speck that I'm not even sure is blood, but it haunts me. My antibody markers are perfect for the new drug, my inflammation was very mild when I did a calprotectin test, I just feel like I'm losing my mind. I need to stop checking so compulsively but I keep thinking that every time I go to take a shit, it's gonna be the one and a large flare will break out.
Is there anything holistic you use in combination with whatever medicine you are on? Beginning a flare up, my first in years, and would like to know if anyone has any trusted holistic remedies (in combo with your meds, or not?) I am on Mesalamine.
I was just diagnosed with UC proctitis in Feb of this year. Took the mesalamine enemas for about two months straight and then went into remission which I was very happy about. Then I got sick for 3 weeks where my tonsils were inflamed and I was in severe pain so a Dr gave me antibiotics. What they did not tell me is that antibiotics aren't good for UC because they strip your gut lining and shove you into another flare. So, here I have been, thinking I irritated it by drinking a beer or eating a spicy Sammie so I have been eating bland food, drinking probiotics/ gut healthy things for nothing to matter and now I am back on enemas.
Enemas are a personal hell I know we all can agree upon. The cold, hard bathroom floor with my butt in the air as I do the deed. The shameful heating up the mix prior so I don't cramp to high heaven.
This sucks. I know I have a better deal than most with my diagnosis here but man does this suck and wasn't even on my radar to deal with in life.
I just got the letter from the GI who did my most recent scope and she says everything looks great and to keep on keeping on and see you in a year for another scope. This same Dr started bitching at me before I had even left the procedure room that the prep wasn't good enough and I needed to come back in 3-4 months. side note: not my first rodeo (scope) and my prep was just fine.
The last handful of scopes have had Drs being very certain of this or that about my disease, only for the labs to come back and contradict them.
Everything looks great, the colon looks healthy, you are in remission (doesn't feel like it). Labs come back that I'm not in remission.
Death and destruction and we need to change your meds (WTH??). Labs come back that nothing is cancerous or abnormal and no changes are needed.
I have become a warrior for my own health and I've stopped challenging the white coats with their preconceived ideas of how my disease or treatment plan NEEDS to look like. I simply move on and find another Dr. I'm done arguing with people who don't bother to look at my whole person to see what could possibly be causing issues (oh, I don't know, how about losing the parent I was closest to and making a cross country move to care for him and having him die in my hands? Can that be taken into consideration before you DEMAND major changes to my treatment plan?) If Dr pushes back on less invasive options then I know that's not the Dr I want.
It's just annoying that these people who went to school to have the most accurate information about the digestive tract can be such goobers when it comes to treating actual patients. For the love of all that is holy, THINK OUTSIDE YOUR BOX! It's also annoying that these people can impact whether your insurance will cover your treatment or if they will make you go through unnecessary hoops. Read the notes in your files!! That's how I found out one of my Drs was using the notes to try to push me into a treatment plan she knew wasn't necessary but would bring money into her firm.
Sorry folks, I'm just bitching. I have made plenty of comments on other posts about the white coats and how that gives them a deity complex and how the patients just take whatever they say and never question it. I know how to be a warrior for myself and I know how to manage my disease and when to ask for help. I'm just annoyed and frustrated and needed community. I know you guys are in the same boat and that you all appreciate the actual Drs who aren't just cookie cutting treatments.
Hi. I love my coffee, but the feeling is definitely not mutual. What do people like as a caffeine free coffee alternative? I'm going to try chicory. Anything else people like? I'm also looking for a non dairy creamer to pair with it. Thanks!
Hey everyone!
So I got diagnosed on October 2025 (now August 2026 for the records lol). I was having symptoms for about a month before being diagnosed. These symptoms included urgency, frequent BM (like maybe 15x a day), after eating ANYTHING having to run to the bathroom and blood. After my first colonoscopy I was diagnosed with mild-moderate UC on the left side.
After that I was prescribed Mesalamine and took 4 1.2g pills a day. This worked pretty well very quickly.
November 2025 had a bad flare. Going to the bathroom like 20x plus a day. Got put on a short 40mg/day prednisone course and it sorted me out within about a month. Total remission from there on out while still taking the Mesalamine.
Fast forward to end of May 2026 and I start to get this weird kinda pain in my stomach again. It progressively get worse and I'm having urgency about 3x a day with blood. Mostly bad in the mornings with urgency diarrhea and lots of blood and mucus. I called my Doc and got sent the prednisone again. That helped mask the urgency and pain during the day, however, every morning it was urgent diarrhea with lots of blood. Finished that prednisone around endish of June and had urgency in the morning, blood in all BMs and always diarrhea continue.
I went in for my second colonoscopy on July 8th 2026 and they said the results were basically back to where I was at the first one in October 2025. I just turned 26 and have been fighting to get on insurance and was told to let them know once I am on new insurance to start me on Tremfya.
I continued to have urgent BMs every morning and always mostly blood and mucus in all my BMs throughout the day (I was going about 5-7x a day) and always diarrhea.
Now we are at current times (August 18th 2026). Starting around August 8th I started to experience A LOT more blood. My urgency went through the roof. I was going about 7x a day but it was still always blood and mostly blood and mucus. I will wake up at least twice in the middle of the night and run to the bathroom and experience at least 20min long periods of having to go, going, having it look like what I can only describe as mostly mucus followed by something that kinda looks like round ground turkey bits with blood on it, followed by I guess a lump/puddle of blood. Wiping is all blood on the TP. I also started getting a lot of canker sores around this time (end of July through first weekish of August.
On August 10th that night I had EXTREME anal pain. Like it felt swollen and this super achy dull throbbing pain after going to the bathroom. The next day I was so tender. That dull throbbing achy pain was so persistent. On August 12th I went to my GI and they attempted an examine with their finger but it was so painful they couldn't do it. Got sent home with some cream and started another round of 40mg/day prednisone for 10days this time before the tapper. I also started my first dose of Tremfya the next day.
I injected the 2 loading doses of Tremfya at home and have still been taking the Mesalamine hoping it will work again randomly. But I am still experiencing a lot of pain in my BMs and definitely A LOT OF BLOOD AND MUCUS. I wake up about twice a night with urgency and stomach pain, go to the bathroom and still see the mucus, bloody ground turkey (?) like texture. When I am awake it takes about 2 hours after taking the prednisone to feel probably 70% normal with maybe 2x urgent bathroom visits a day, but at night it wakes me up and I am going a total of about 7x a day and its all looking really bad.
I am just curious how serious this actually is. Do I wait out the prednisone (I'm on day 6 of a 10 day 40mg/day before tapper). How long before Tremfya can help me, also like those success percentages on their websites are not very comforting lol. Do I go to the ER for IV help? I don't know how bad this and how assess this.
I'm going about 7x a day, lots of mucus and blood, cramping and pain in stomach at night and before taking prednisone, urgency about 3-4x out of those 7 BMs a day. Anal pain is definitely down, but I am still tender (hurts to couch, sneeze and laugh but I can move around just a little slower and more careful).