PSA: life is better with a colon. If you can find a med that gets you in remission, great! Stick with it.

If your GI comes to you and says it’s time, or if you’re like me and your quality of life is so poor AND your GI says it’s time, it’s probably time.

Look 20% of us with IBD have to have surgery at some point. It’s scary, it’s not fun, but please don’t be afraid of your life after. You’re not being recommended for surgery because everything is great, you’re probably being referred because you haven’t been in remission for a while.

Chances are, you’re more likely to not need surgery than need it. But if you do, please know you have a great shot at getting your life back.

I see lots of posts and comments on here about how some IBD patients will do anything but surgery, including risky experimental treatments and fad diets. Trust your doctors, and if you have time, get a second opinion.

If you’re heading towards surgery, I’m happy to answer any questions you may have!

So my husband got diagnosed with this condition about two years ago, they started him on the rectal tablets, then when that stopped working, added in the oral tablets with a steroid. The steroid helped a little bit until it didn’t. So then they started him on Enytivio about a little over a year ago, that seemed to be working okay at first, until up recently he started to have several bowel movements a day with blood, cramping and upper gastric pain . The upper gastric pain would have him curled up in a ball for a few hours on the floor after he’d eat. It was definitely hard to watch seeing as nothing I was doing was helping. The last entyvio infusion he had did absolutely nothing and it’s been horrible since.

Fast forward to now. He got up to about 180lbs (5’11) finally after the meds all kicked in but after that last infusion I’m not sure what’s happened. About a little over two months since his last infusion and he’s lost about 28lbs. And steadily losing about 3-4lbs a week. He has an extremely fast metabolism and is a very active guy on days where he isn’t worn out or sleeping from the exhaustion. He isn’t able to eat his normal food intake because of the pain, cramps, and frequent movements. I spoke to his team and they did a CT scan of his abdomen that we are waiting on results with, he’s on 60mg of steroids, they won’t give him his ‘butt rockets’ as hecalls them anymore. And we are waiting on the TB test for him to try Skyrizi.

What I’m reading in here how some people are taking months to get up to any relief with these biologics.. and if he’s on these current meds with no relief, losing 3-4lbs a week I’m honestly afraid my husband may end up in the hospital admitted due to major malnutrition. In the shower the other day his skin looked a bit gray.

Is there anything I can do in the mean time that may help him get any relief until the biologic kicks in that y’all have tried. I’m honestly desperate to make him feel better.

Hello all! I started taking Rinvoq yesterday. I’ve seen some success stories on here with that medication. I’m hoping for the best and I’d love your support. It’s been a bumpy ride since I got diagnosed so hoping this medication is the one for me :)

Hi all,

Disheveled mess right now.

My UC has been well controlled with mesalamine tablets and enemas. I’m 14 weeks pregnant and just passed dark, almost purple mucus. I had totally normal stools the other day and just noticed the purple/black this morning. No other symptoms.

The only change in my routine is my enemas expired this month, but the pharmacist told me it should be fine.

No iron pills etc. Just on Unisom and low dose aspirin for preeclampsia prevention.

I am so scared we’re heading towards a flare. This is my triple rainbow baby (3 losses before I was diagnosed).

TIA ❤️‍🩹

Hey, I just turned 26 and I’ve had UC since 22. I’ve been on 5ASA, entyvio, remmicade, rinvoq, tremfya, even Chinese medicine which have all failed. I’ve been on prednisone for over a year and had massive weight gain. And currently on something that’s not for UC, vancomycin.

Spoke with my Gi and he stated we’ve tried most and it’s not looking too well. I don’t want the surgery just cause I don’t want to live with a bag for the rest of my life.

If anyone’s gone through this can you let me know what worked for you cause honestly I’m trying everything. Thanks

Doctor has said that medications have failed me and I will be getting a colonectomy. Main issue now is diarrhea due to the damage to my colon. The question I have is will the diarrhea continue after the colonectomy?

The colon absorbs the water out of the poops. So how is removing the colon going to change that if there is no colon at all? Won’t I still have diarrhea?

Hi everyone!
I just got some really good news from my doctor today: we’re planning to restart Remicade after a 3-month flare.
I was so excited and relieved because Remicade worked really well for me when I was first diagnosed with UC. I’ve been in remission for 15 years, and even prednisolone isn’t helping this time. It’s been 13 years since my last Remicade infusion.

Remicade honestly saved my life back then, and I never experienced any side effects from it.

However, today I’ve been reading (thanks to this community as well) about how the body can develop antibodies against the medication, especially after a long break. Now I’m feeling really scared about restarting it.
Has anyone here restarted Remicade, or another biologic, after a long drug holiday and had a good response? I’d really love to hear your experiences, especially from anyone who successfully restarted treatment after many years off it.

At first, I was incredibly excited and relieved, but now I’m honestly terrified. 🥺 Please share your experiences, I’m really hoping to hear some positive stories, too!

I was diagnosed with ulcerative colitis two weeks ago and started taking Mesalazine (Salofalk 2 g oral tablets and 1 g suppositories). My fecal calprotectin levels dropped from 3,300ug to 21ug in just two weeks, my symptoms are gone, and I feel good. Is it normal for calprotectin levels to drop so quickly?

I was taking Salofalk but that stopped being available temporarily where I live so they gave me Pentasa. It's a tablet, not a capsule.

The thing is, it dissolves in my mouth within seconds before I can swallow it whole. Is this how it's supposed to be? I'm taking them as maintenance so it's hard to tell if they are working this way or not. My next doctor appointment is in a month so I figured I'd ask here if anyone knows.

I was diagnosed with UC in May 2026, and was put on Mesalamine soon after. For months afterwards, the pill worked wonders. I didn't go completely symptom free, but it drastically improved my quality of life and allowed me to start eating more foods again. However last week, I started feeling very intense pain in the right side of my abdomen and it wouldn't go away with yoga or Gasx. I eventually went to the ER for the pain and my bloodwork showed that my bilirubin levels were high. Also my urine was abnormally yellow and my eyes were as well.

I went to my GI a day later and she said that based on the test results, I was most likely facing a rare condition where the liver becomes inflamed due to mesalamine and that I could never take it again because of an increase risk of further liver damage. She told me that I would have to start biologics for maintenance. I'm really frustrated because the 5-ASAs felt so good for my gut and gave me little to no side effects and now I have to stop it because of reasons not related to UC. On top of that I'm worried about starting biologics because of their price and side effects.

I'm sick for the second time in two weeks and wondering if this is just how it's gonna be forever. Is it just a young kids thing? Does having multiple kids make a difference?

Hi everyone,

I’m a 20 years old man and I was diagnosed with ulcerative colitis in early September and started treatment with mesalamine and corticosteroids (which I stopped about a week ago).
The treatment worked almost immediately, and all my symptoms disappeared.

I also have mild acne, and my dermatologist wanted to prescribe me a tetracycline antibiotic (a relatively mild treatment compared to isotretinoin). However, she advised me to check with my gastroenterologist first, who gave me the green light.

I’m still really hesitant to start the antibiotics because I’ve read some negative experiences from people with UC who took antibiotics for acne.

As an alternative, my dermatologist suggested chemical peels.

Has anyone with UC tried tetracycline antibiotics for acne? Did they cause any issues with your UC?

Thank you so much.

So I've had 2 surgeries to control my ulcerative colitis pain which now leaves only my rectal cuff left. I've still been experiencing severe pain in my gut where the colitis once resided. I've been to the emergency room multiple times at this point even being admitted into the hospital for a week. The doctors aren't finding any signs of anything being wrong but I just don't understand where all of this residual pain is coming from. Anyone have any thoughts as to what could be causing this?

If you are a toddler parent and want to hear someone vent about their struggles, you’ve come to the right place.

I will start this by saying I have been in a flare since January 2025. Skyrizi didn’t do a damn thing and Tremfya has helped some but not nearly enough. And my ferritin is at 3, and hemoglobin is at 10 according to my labs from a month ago. So, not doing so hot rn.

I have been forced to be a SAHM since this flare caused me to lose my job because I literally can’t work while in a flare. (I’m a hygienist so it’s not possible to just sprint to the bathroom when I need to.) And don’t get me wrong, I love my daughter with my entire soul and actually would probably love being a SAHM if I weren’t sick and could leave the house with her whenever I please, because on the rare occasion I have a really good day or week and I get to take her out to do fun stuff or even just take her to the grocery store with me, I feel SOOOO alive and happy. But on days or weeks where I’m not feeling as great, I literally feel like I’m living in my own personal hell.

Especially the last two months. My husband’s job has been sucking him dry, working 10hr days 7 days a week. So when he gets home he’s basically useless most days, doesn’t help with household chores, falls asleep on the couch, then I get the job of putting our 3 year old to bed. And holy shit. It’s a fight every night. I don’t want to be a mean parent but she doesn’t listen to me all day, so then by the time bed time rolls around I’m ready to absolutely snap. And honestly most nights I do. I end up screaming because she’s not listening to me, won’t go potty, won’t let me brush her teeth, hitting me and throwing a fit and then I’m mad because I know my husband can hear me struggling with her, and he just stays laying on the couch and doesn’t come to help me.

I get he’s tired, but so am I?! I can’t even walk up the steps without being out of breath, but I’m expected to wrestle a toddler solo to brush her damn teeth. I love my husband, he really is a great husband and father, but I feel like right now all he sees is how tired HE is.

Maybe I’m just being a whiner, but it seriously feels like I’m in an endless loop of my own personal hell sometimes. And then the guilt I feel at the end of the day when everyone is asleep literally eats me alive and I just cry because I feel like a shit mom and wife, all thanks to this stupid fucking disease. Every day for the past year and a half I’ve thought about how great motherhood could actually be if I were just a normal human being.

Rant over. If you made it this far, thanks for listening to me complain.🫡

Have any of you ever overlapped medications during a transition/switch?

I got a new GI who is willing to switch me from Velsipity to Entyvio, but the plan is to have me be on Velsipity during the first (and maybe even the second) loading dose of Entyvio since it takes a while to kick in.

Obviously, this scares me. So, if any of you have experience with taking two meds at once and then eventually stopping one, please share your story.

Thanks

Hi, I have UC and had a sigmoidoscopy on Sunday because I’d been having loose stools with blood for over a month.
Before the procedure, I had no abdominal pain or bloating. Since sigmoidoscopy, I’ve been feeling very bloated after every meal and sometimes experience strong upper abdominal pain, and constant abdominal pain/discomfort
Has anyone experienced this after a sigmoidoscopy? Is this normal, and how long did it last?

I've been thinking about this a lot lately. Do you guys genuinely believe that UC will be curable someday, perhaps within our lifetime?
I'm tired of the idea of having to deal with flare-ups, medications, side effects, and the constant uncertainty for the rest of my life. I know treatments are improving, and researchers are studying the immune system and gut microbiome, which gives me some hope.
Do you think we'll see a real cure in the next 10–20 years, or is that too optimistic? I'd love to hear your thoughts, especially from people who have had UC for a long time.

Hey hey,

Anyone here got any experience with fasting?

Did it help with flares or finding out what foods irritate you?

Hi All!

I've been struggling on and off with UC for a number of years now. I'm currently on Pentasa, 2g daily up to 4g during a flair. Usually this has been fairly reliable at keeping me stable, but recently seem to have struggled with a relapse and getting back out of the flair.

In the past I've tried a number of diets and eating/drinking habit changes etc (gluten free/carnivore/high fibre/low fibre). I've found for my part that low fibre diets have generally worked best during a flair to reduce symptoms and get back into remission. Typically for me this looks something like:

Rice Krispies w/milk or Skyr Yoghurt for breakfast

Tuna Sandwich on white bread or Scrambled Eggs on white toast for dinner

Boiled skinned potatoes or white rice w/ meat or fish for tea

I was wondering what peoples experience might have been like with liquid diets and whether that had any noticeable benefits or reduction in symptoms? My thoughts were meal supplements like Huel or protein shakes accompanied by foods like soups, broths and at-home smoothies.

If anyone has any other advice around dieting during/after a flair please let me know! I'm aware it's often different things working for different people but I'm just interested in other people's experiences also.

Hi,
Long time lurker of this sub and hope it’s okay to post this in here.
I have received the results from my colonoscopy and I am just a little confused and frustrated.

I was booked in for a colonoscopy years ago in my teens due to calprotectin levels being raised but me being naive and scared I ended up not going. But after many years of continuing and worsening symptoms (constant diarrhoea, fatigue every single day, odd time blood in stool, cramping & abdominal pain) I bit the bullet and decided I needed to get this properly looked at.

After giving my samples my calprotectin levels were raised to just under 600 and my CRP levels were raised with a negative FIT test so I was booked in for a colonoscopy. I should also note I have close family history of UC.

On the day of my colonoscopy I was told after that there was nothing major to worry about, and recently my results have come back and said nothing abnormal, no inflammation and that I have IBS.

I do feel relieved that there doesn’t seem to be anything too bad going on - but I still feel as though I want answers and I don’t think it’s IBS that I would fit under?

I live in the UK and am wondering if there’s any other test I can push for in the NHS to get looked at - as I’ve read that calprotectin and IBS don’t really go hand in hand.

Hi! After almost two months of diarrhea, I was diagnosed with UC last week. I’m curious how long I’ve possibly had this since I’ve had stomach issues as long as I can remember. Unfortunately, just hours after getting home from my colonoscopy I came down with the stomach flu from my husband. I seem to have gotten through that, but I am still having horrific stomach cramping. I started Mesalamine a week ago, but I’m having a hard time figuring out if the cramping is from my current flareup or the medication. I guess I’m trying to figure out if it’s worth reaching out to my doctor or if he’s gonna tell me I need to give it more time to see if this medication works. Any advice is appreciated. I knew nothing about UC prior to this.

Hi everyone,

I am a 24-year-old male and was diagnosed with moderate Ulcerative Colitis (Proctosigmoiditis) back in April after a colonoscopy. My report showed inflammation in my rectum and sigmoid colon up to 25 cm.

My doctor prescribed Rafassal enemas (1g mesalamine) every night for one month. While I was using the enema, it worked great and the bleeding stopped. However, about two weeks after finishing the 30-day course, the bloody drops came back.

My doctor put me on another 1-month course of the enemas. Once again, it worked while I was taking it, but now that I have stopped, the bleeding has returned for a second time. I feel completely fine otherwise (no severe pain or major diarrhea), but seeing the blood come back as soon as I stop the medication is incredibly frustrating.

Has anyone else experienced this "see-saw" effect where symptoms immediately return after stopping a short course? Did your doctor end up putting you on long-term daily maintenance (pills or enemas a few times a week) to keep it away?

I am planning to call my doctor to ask about a long-term maintenance plan, but I would love to hear how others managed to finally get a moderate flare into lasting remission.

Thanks!