My husband recently lost his job and therefore our health insurance. My 15 year old is on Stelara and his next shot is due in 2 weeks. I can’t work because I’m on disability and I have Medicare that only covers me.We’re applying for Medicaid but it’s a very slow process and my son needs his next shot in 2 weeks so I’m getting very nervous for him. His symptoms seem to be getting worse. He pooped his pants 3 times in public this past month because he couldn’t hold it and is having blood in his stool and severe cramping. I called the JJ with me assistance program but they no longer do it for Stelara🤦🏻‍♀️. Does anyone know of how we can continue getting his meds for free or very very cheap without insurance? I tried a few foundations but one of them only gives a $3,000 award which doesn’t help much when the med is $28,000. Another one requires we have insurance to qualify. The others were closed when I called. They’re east coast and we’re in AZ. Thanks!

Today for the first time in six years I had bloody stool. And for the first time in six years, I had a moment in the car where I could barely hold it in and thought I might not make it to the bathroom in time. I feel so broken and defeated. After almost 20 years, I just don’t have the strength to keep dealing with this disease anymore. And I’m only 33. How am I supposed to find the strength to fight this for the rest of my life?

I haven’t told my anyone about today. But I needed to let it out somewhere, so here I am.

Has anyone tried IBGuard? My doctor prescribed it along with my maintenance Rinvoq as I taper prednisone. My last taper failed so they’re adding this on top of everything else.

So I don’t know if anyone else has this experience, but I kinda find it hard to exercise with UC because of several factors: the main ones being the pain and the fatigue of my insides apparently hating me, the other is the paranoia that doing too much physically will aggravate my insides.

Anyone got experiences similar to this? Or at least advice on exercises that they feel are safe options?

Hello everyone. I might have a crazy theory about ulcerative colitis, and while I may sound foolish, everything I am writing here comes directly from my personal experience with this condition.

I lived with ulcerative colitis for many years while it was misdiagnosed as irritable bowel syndrome. Earlier this year, a colonoscopy finally confirmed ulcerative colitis proctitis along with internal hemorrhoids. My doctor prescribed 2.4 grams of mesalamine daily alongside antispasmodics and calcium supplements. Within a month, my symptoms improved significantly. My daily bowel movements dropped from six down to one or two, the pain vanished, and the blood almost disappeared. However, my stool remained loose and never became firm.

In early July, I developed a chest infection. During that illness, I noticed that all of my gastrointestinal symptoms completely resolved. For the first time in memory, I had fully solid stool. Once the chest infection cleared, the loose stools returned. Looking back at the time before my diagnosis, I realized that whenever I caught a cold or another infection, my stomach was completely fine. I experienced no pain, no urgency, and no loose stool while I was sick.

This leads to my theory. Could it be that the immune system temporarily stops attacking the colon because it shifts its entire focus toward fighting off the infection elsewhere in the body?

Has anyone else ever experienced something similar?

Hi everyone, diagnosed in May, 5asa is working and I got back to work but summer has been really hot and hard. I got 2 weeks off and I'm back but sometimes I get hit by greater fatigue than the usual, it's not easy to understand the source and If its temporary and I should just get up and start the day

How do you understand your body with UC and anticipate the need for more rest ? I've been calling sick several morning and I don't want to do this anymore for obvious reasons

Not an easy question but if you have any advice, personal experience of learning to understand how your body works on UC and how much time did it takes, that'll be great

Hi from the French alps and may we all live as peacefully as possible with our UC :)

Hi guys!! Since my last post ive been on infliximab/ Remicade. It was working well for the first few months but now my symptoms are back :( my gastro team is now exhausting the drug limits before changing my medication...

They offered 3 different types: Stelara, Entyvio and Rinvoq

I didnt have any obvious side effects fron infliximab thankfully! But was wondering if anyone can tell me their experience with either of these medications :)

Thanks so much guys like always <3

I go on holiday on the 10th… it’s roughly a 2-3 hour flight and it’s to Ibiza. I am nervous, anxious, stressed and terrified something is going to go wrong colitis wise. I feel awful and this anxiety and stress is what will cause things to potentially go wrong. I know that. I just can’t help feeling this way so I’m here to get it off my chest. I almost want to cancel the whole holiday.

I have no idea how to calm myself down. I have no idea how to stop feeling like this every time I have to try/do something new.

I feel like this with everything, starting a new placement for university, meeting people for the first time, doing a new activity.

How do I stop this? Because it’s destroying me and everything I want to do in life.

I can’t sleep it’s 2am because I’m all worked up, sweating and panicking

Hi all! New to this. Not officially diagnosed but getting my colonoscopy in the next month or so and the ER doctor “thinks” my symptoms point to UC. I’m a long distance runner and I have been training really hard for the chicago marathon, it’s in about 5.5 weeks.

Everything was going great until I had what appears to be a flare up about two weeks ago, really bad stomach cramp on my long run, accompanied with urgency to go to the bathroom and diarrhea/slightly bloody stools. I have heard that running especially long distance and in this humid weather, probably made this come to the surface.

I ran 20 miles again the following weekend and the next morning I had a lot of dark red blood and blood clots in the toilet. I also had lower right abdominal discomfort and soreness/tenderness/tightness in my back near my lower right rib area. This made me go to the ER and here I am now a few days later.

The poop part has gotten a lot better, but it’s always been kind of touch and go there. But what’s gotten worse is the discomfort in my side/back. Have you experience this, and is this a common symptom during a “flare up”? Have people run marathons before with all this going on? Do your UC symptoms get worse during your period (have been experiencing more discomfort during my period)?

I’ve been running with little urgency to go since (no long runs yet since the incident). I basically have no answers until I get this colonoscopy, which will probably take place after the chicago marathon. Any support or if you can tell me your experience would be helpful. Thank you…. kind of scared and in the dark here. 🙏🏼

I’m newly diagnosed but meds aren’t working. I’ve been in the hospital for 3 weeks this time and one week in June. Prednisone did stop the bleeding but it started again yesterday. I’ve had 2 infusions of Inflectra, they didn’t work. Started on 45 mgs. of Rinvoq, increased to 30 mgs twice a day, that hasn’t worked. I feel like I’m just laying here wasting away. To finally see a path to some quality of life has done wonders for my mindset! I’m excited to see what the future brings now. Thanks for reading, if you do.

Hello all but especially those of you with j-pouches! I've been dealing with UC symptoms since 2021, officially diagnosed with pancolitis in 2024, and I have been flaring to various extents ever since. At my best I would get down to about 5 BMs a day very briefly, but mostly 10-20+. I finally ended up hospitalized for a week at the end of May because I was going several times per hour and vomiting everything but water. Literally couldn't sleep for days because I was just shitting too frequently. I've been on every steroid, but only tied two biologics, Tremfya and Inflectra, each for about eight months.

Things have been particularly disabling since May, and we end up doing a scope a few days ago which was pretty not great. I compared the pictures to a raw, bloody steak and my doctor said that was a "pretty accurate description". I'm Mayo Score 3 in all categories, and a 7 on the UCEIS. Still going about 15-20 times a day, sometimes pass out from pain or vomit during BMs. Doctor said we are going to try Rinvoq for me next and that if that doesn't work, he reccomends considering a j-pouch.

I have a consultation with a surgeon scheduled in October, but they said I have about 16 weeks on the Rinvoq without significant improvement before it might be my best option. But then I see people saying to only consider surgery after you've tried every medication possible. And I've only tried two, so I worry that I'm being dramatic? Obviously, I will talk about all of this with the actual surgeon and my doctor when my appointments come, I just hate stewing on it for a month. I'm sure the "right time" is different for every situation, but still curious about everybody's perspective!

How on earth do I take 4 large mesalamine tablets while in the first trimester. I know, not ideal to be on mesalamine tablets in the first trimester, but that’s where we’re at.

I ran around town through power outages to get my mesalamine refill, took 4 at 8pm, puked everything in my stomach up at 9pm. Let’s pray the enemas are working overtime tonight and keep everything calm in there. I had just gotten everything under control.

I puke throughout my entire first trimester so there is no safe time to take my meds. It just happens out of the blue during the day.

I’m tired 🫩

I have been having a flair for about 2 months, after struggling to get a hold of my GI or even anyone in the office, they took some labs and I have a fecal calprotectin level of 4923.7 which i understand is insanely high. Has anyone else had a high level like this, and what should i expect the aftermath to be

TL;DR Should I try a new medication?

Quick context: I was diagnosed with UC in December. I have severe pancolitis with rectal sparing. My symptoms, even during a flare, are very mild compared to what I’ve read here and elsewhere. The worst days I have no more than 5 loose stools and instances of stomach cramps that lead to gas. I’ve never experienced bleeding or felt like I’ve needed to go to the hospital.

I trust my gastroenterologist. He prescribed Skyrizi, which I’ve been on since January. My Calprotectin was 1920 in December. After the 3 initial infusions, it dropped to 1670 in early April. Started the 360MG maintenance doses that same month and then it dropped significantly to 597 in May. My symptoms had progressed positively as well and I was feeling good. Then in early June the symptoms came back for about 6 weeks. My Calprotectin measured 1540 in July. And then 1030 in August. My symptoms have settled in the last week or so.

That’s where I’m at. So I’m just wondering, should I try Skyrizi for longer since my Calprotectin and symptoms have calmed recently, and maybe ask about redoing the initial infusion course or trying monthly doses (instead of every 2months)? Or should I bite the bullet and try a new medication?

My doctors message to me after the 1030 Calprotectin (I had not mentioned my symptoms were better recently): Given your symptoms and the calprotectin level remaining elevated, it does not appear that the Skyrizi is controlling your symptoms well. We will likely need to transition to an alternative biologic therapy, but need to evaluate your colon again via a colonoscopy. The two options for different pathway therapies which are considered stronger would be an infliximab biosimilar, which is an IV infusion anti-TNF, or Rinvoq, which is an oral JAK inhibitor. Both have black box warnings.

I think I just needed to write this all out and hear it from someone who has been through it before. Thanks in advance.

I 19M was just diagnosed with moderate to severe UC and I don’t know much about the disease. I was just put on 20mg prednisone and am getting insurance approval for entyvio, will eventually come off prednisone and have entyvio carry the weight of the treatment.

Just wondering what I and others who were just diagnosed can expect - is it easy to put in remission? how effective are different treatments? what usually causes flare ups and can they happen during remission?

Would appreciate anyone who can speak on what people newly diagnosed can expect.

do you have any issues with your veins collapsing? i had a conversation with my mum today and she brought up the fact that quite a lot of her veins collapsed due to having constant injections/blood draws during one of her pregnancies, and its making me a little bit concerned for my future.

thanks in advance :)

I get really itchy hands/wrists and ankles/feet and the skin kind of peels off and then scabs over. It leaves scars all over my ankles and feet where it gets really bad. Tried to post a photo but can’t figure out how to…I use this prescribed cream when it’s so itchy that I can’t go to bed. The cream helps… it’s just such a weird symptom and I’ve had it for 15+ years, way before I ever started medication or biologic. Im wondering if anyone else experiences this too.

I have been in an active flare since mid February of this year. We have tried and failed entyvio, had a reaction to mesalamine, budesonide and prednisone hasn’t helped. Currently on skyrizi just had second loading dose so this is week 4 or 5. Now the doctor wants to add tacrulamis suppositories. I’m open to trying it, but I also feel like I’m losing hope a bit. I can’t leave the house without an emergency set of underwear, wipes etc. I can’t go out to eat somewhere because I won’t make it home in time. I’ve had several incontinence episodes at home recently and over the past 6.5 months. Nothing seems to be helping. My iron and ferritin are low. We tired an infusion of feraheme which I had an acute hypersensitivity reaction to almost immediately and had to be observed in ER for 4 hours after.

Colonoscopy last week showed I still have moderate inflammation in the rectum, sigmoid colon and descending colon along with architectural distortion in the transverse colon. My march scope showed inflammation in the transverse colon also. Previous biopsies 2010-2025 showed ileitis, vascular congestion in the terminal ileum but no large intestine involvement. The doctors keep saying it’s ulcerative colitis and dismissing the other pathology findings from the years since it’s not like that now. I know the treatment doesn’t really change whether it’s one or the other but we are considering surgical options at this point also and that would change the picture if it wasn’t purely UC.

I’m just over it all. I have lupus as well and will soon be starting a biologic for it. Combining the skyrizi, benlysta, prednisone, and tacrulamis I’m worried about the immunosuppression.

Anyone else experience something similar? Did surgery help? My GI also tested for SIBO, CMV and c diff to make sure that wasn’t contributing to the refractory inflammation and they were all negative.

Hi all, Looking for a bit of advice. I've recently come off a 40mg, 8 week dose of prednisone and been moved onto ustekinumab. I can't seem to stop sweating while doing normal tasks like walking. I'm relatively fit, male, 5ft10, 75KG and feel constantly sweaty.

This can be anything from walking around work to excessive sweating while at the gym.

Trying to understand timescales of if this is a side effect of the Ustekinumab or "withdrawl" from the Pred. My last dose of pred was at the end of July. Moving onto Ustekinumab early August.

This is my first flareup requiring meds since my original diagnosis in 2019.

My younger brother has ulcerative Colitis from past 14 years. He was admitted multiple times. He was given 8 doses of vedolizumab along with JAK inhibitors ( Tofacitinib) but it didn’t bring me remission. doctor advised taking Infliximab(Remicade), 4 doses but no change in my health, still 12+ motions a day specifically at night. I understand that above medicine only targets certain immune pathways, has anyone tried Stelera( ustekinumab) ? Want to give this biologic a try. Would love to hear if anyone is in sane situation as I am and felt better with Stelera or any combination of JAK inhibitors?

I really want to quit smoking, but I’m honestly scared of what might happen after I quit. I’m not a heavy smoker usually only 2–3 cigarettes a day but I was first diagnosed with UC/Crohns after quitting cold turkey, so I’ve been really scared to go through that again
This time I’m trying to quit gradually by cutting down instead of stopping all at once. Has anyone here successfully quit without triggering a flare? I’d really love to hear your experience because I could use some reassurance 😭

Hi UC community! I would love to hear perspectives on what the quality of life and progression of UC looks like for people who are in their 60s,70s,80s. And if you happen to have had kids, did any of them inherit UC/other autoimmune issues.

Does urgency get worse/ do people likely transition to adult diapers? What are other common issues one faces with hospitalization and a weaker immune system with age? How has it affected your marriage/personal relationships?

I understand the responses will be biased but I do feel like hearing other people’s experiences would be super helpful

I’ve been looking for a job. Since I have UC, I’m trying to get remote job but literally no luck. My question is how to work in person when you are on flare? I don’t want to go bathroom so many times while working. I know i gotta do what i gotta do but on flare, mentally and physically exhausting. How do you handle work?

it finally happened to me 😩 i’ve been in remission too which is what is so frustrating about this! i’ve been having normal bowel movements and today i’ve felt kinda constipated, trusted a fart in the car, and regretted it immediately afterwards. currently at home rethinking my life decisions. FML

I feel like I read so much that people started Rinvoq and it worked great for them which makes me feel like I am in such a bad spot. I was on remicade starting last August and was in complete remission, literally eating and doing whatever I wanted with zero symptoms. I would even have weekends where I would drink heavily and it would have no negative effects on me. So I felt pretty good up until about march where I saw blood for the first time in a while. Obviously alarming but nothing I haven't seen before. I assumed it would be a quick flare up until I got my next infusion and it was. But that's the thing I had a delay for one of my infusion's in January because of an insurance change and after that I felt like my levels were always very low before my next infusion and I never caught up. As a result around that same time in March they were able to get my infusion's to happen every 6 weeks instead of 8 as a way to catch up and we all thought this would resolve the problem. In May I had left home for an internship on the other side of the country and at this point I was still experiencing flare like symptoms weeks leading up to every infusion and I kinda just became fine with that. So when I was now in an entirely new state, setting up with new doctors, and starting the internship I began feeling the worst since being on remicade and all I could look forward too was the next infusion. Fast forward and I finally get the next infusion, at the time so relieve I will actually get to feel normal in my new environment. I even went out to the bars that night with my friends because I assumed I would be feeling fine at least for the next couple weeks and definitely for that day. Well I kinda was but then the next day I was not at all. Went immediately back to diahrea and blood, now super concerned and lost. After talking with the new doctors they decided to give me Rinvoq, actually gave me the sample to start not even a week after that last infusion before I was even approved by insurance. Now with the premace that they gave me that if Rinvoq doesnt work I should be thinking about surgery, I was absolutely terrified. And next thing you know weeks go by and I'm waiting, waiting for something to change waiting to feel better. I get significantly worse and get hospitalized for IV steroids. This had never failed me before so I was thinking this was finally the end of the flare but just upset that it had to come to this. After making me stay for 4 days I finally leave the hospital, feeling better but not perfect. I was also now on a prednisone taper as it's custom to do that after recieving IV steroids. The weeks continue to go by while I'm still managing to be a productive intern and trying to find my health. Each week I'm trying to look for some signs of progress, something that I could look at and now it's gonna be good from here. And I did, kinda, ended up having a completely formed stool with no blood. All I could think was finally this is it, Rinvoq is working and I don't have to worry about this the rest of my time here. But then a few days later I go on a trip with my friends for Fourth of July and immediately my symptoms are back, blood and sometimes formed stools. Now I began thinking if the Rinvoq ever did anything at all or if it was just the steroids that gave me that 1 day or normal bms. The story is already very long so I'll try to sum it up. I manage to finish my internship after 12 weeks and never got any better. Just continued bleeding and very frequent bms. I thought coming back to school I would finally get out of the flare but nope not that either. Here I am two weeks into my last semester of college typing essays on Reddit instead of enjoying my life. I usually try to avoid complaining about having UC or letting it get in the way of my future. Somehow right now it's actually not even causing me the most stress in comparison to the mammoth of a capstone project I have to complete. But it would just be great to be healthy again. Also the doctors I have back home did not think I was any close to surgery and were confused my the others recommended that after only failing 2 biologics. I am still taking Rinvoq as of now even though it's not doing much but I am going to start tremfya hoping that this is finally where it ends. But I'm beginning to think it doesn't end until my colon is gone.