Hi! Would love to hear everybody’s experiences with getting sunlight and it’s potential effects on the disease.

It is know that uv exposure affects the immune system and might protect from some autoimmune conditions: https://www.scientificamerican.com/article/surprising-ways-that-sunlight-might-heal-autoimmune-diseases/

My recent experience: I had three or four great years of remission while getting uv exposure regularly during the summers. I used to eat lunch outdoors with my colleague during the summer. We would often sit about 20 minutes in mid-day sun, and I was wearing sunblock only on my face, so arms and legs would often get uv. (I live in Finland so even midsummer mid-day sun is pretty moderate.) I also had a garden that I would tend weekly. During this time, I was only on a moderated dose of mesalazine, maybe a short course of local budenoside during the winter. I basically forgot I had the disease.

Then I missed a whole summer (2025) of sunbathing because our office moved and we started having lunch indoors. I also moved and had to give up my garden. And I stopped biking to work. At the same time I got more cautios with uv (to not age my middle-ages skin any further) and was usually wearing spf 50 and clothing when out.

When the autumn 2025 came, I started feeling terribly fatigued at times. At Christmas, a very persistent, steroid refractory flare started and me and docs have been battling that ever since. Now on mercaptopurine since April. It is helping some but also makes me sunlight sensitive so cannot test the potential beneficial effects of uv any more. Biologics (infliximab) are being considered.

Of course it’s hard to say if the decreased uv is the reason for the flare but I’m seeing a pretty clear correlation. I’ve also been wondering if the beneficial effects of smoking for uc actually come from regular sunlight exposure. (Although I know that they have recently discover a bacterial element.)

Does anyone have similar or contrasting experiences?

I’m in a big flare right now and oh. my. god. I’m so tired. It doesn’t matter how much I sleep, I just feel like I’ve been hit by a bus.

Today I had a gyno appt and went to the library and lunch after, then I slept for 4 hours when I got home and I’m still BEAT.

Usually when I’m on prednisone (on a taper, started at 40mg, now at 30mg) I get an energy boost but that has not happened this time.

Now I know this is expected when flaring and there’s not much I can do until they scope me in a couple weeks and figure out what medication to move me to next, but is there anything I can do? Or do I just need to give myself patience and grace. 🫩

For those of you who have to take Rinvoq, when did you start to see less blood and have less urgency? For background, my husband has severe pancolitis. He has failed mesalamine, and built up antibodies to Remicade (Infliximab) which led to him getting on Rinvoq. It’s been about two weeks since he started Rinvoq and he has had no relief yet. Remicade took about 3-4 weeks to work for him if I remember correctly. We are just getting nervous because I read in a support group that people were feeling better in TWO days 😭 Thank you in advance for any and all input.

Even though I've had my treatment many times I get extremely anxious every time i go because of how many things that went wrong. I dont even sleep the day before my infusion just cause my brain keeps trying to prepare for any worst case scenarios. The first time I had my treatment I had an allergic reaction which was quickly delt with and my veins aren't easy to access so I've endured 5+ pokes and had some IVs that would go wrong. ​

​​​I don't personally know anyone who goes through this and I'm always told I'm being dramatic or I get judged for crying and to toughen up because I'm now "18", I don't think medical trauma has an age limit. Is there anyone out there who feels this way about their infusions?​

Hi everyone! I’m hoping someone can help me out, as I don’t really know much about Tremfya yet—I only know that it’s sensitive to heat and needs to be put in the refrigerator immediately upon arrival. Two days ago (Tuesday), I got a call to arrange for the medication to be shipped to my home; I was told it would be sent on Wednesday and arrive on Thursday. Well, I’ve been waiting all day today, but FedEx never showed up. I’m not sure if it’s okay for it to arrive tomorrow, given that I understand it shouldn’t be left in warm conditions for too long. Thank you in advanced.

Hi all I am week 2 into J pouch surgery and am feeling like I need to go to the toilet like every hour, it’s really depressing me and my j pouch feels like it’s constantly filling up every hour. I am trying to find a diet that works. Please give me advice (people who have a j pouch). I know I’m early into the journey but my mental health is deteriorating and I will buy loperamide on week six as the doctors said I would be allowed to if I wanted to. ☹️

I got diagnosed via colonoscopy in September where they found moderate inflammation, and this was despite me having almost no symptoms at the time. I did have a severe flare (to me it felt severe, and I had a calprotectin of 1400, but I wasn't hospitalized) from July to August, and also last year from November to January, but other than that, I haven't had any digestive problems. I do have a long history of chronic fatigue and chronic pain since I was around 14, which was debilitating and frustrating and I still have that to this day. and I'm starting to wonder if this could have anything to do with UC? I have had so many tests that have come back normal for things like arthritis/rheumatoid arthritis, lupus, thyroid issues, iron deficiency, other vitamin deficiencies, allergies, etc. that I was basically diagnosed with fibromyalgia. I always felt like I was medically complex and debilitated with no explanation. This UC thing was very unexpected.

I am currently trialing Mesalamine and can't tell if it's doing shit. The more I read about UC the more scared I feel. The fact that my bowel did not look ok despite me feeling fine scares me and I really don't want this to get worse....

I’ve been taking Mesalamine for years, and only recently got into a bad flare and was on cortiment for two months.

One thing that sparks joy is putting all of my weekly pills into a beautiful wooden pill organizer I keep on my bedside table. I’ve been doing this for years.

I realized the other day I didn’t even consider Mesalamine comes in blister packs. And maybe I shouldn’t be doing that - popping them all out to organize. The pills get slightly darker/speckled after few days.

Has anyone else done this, or heard from their GI about proper storing? Now I’m wondering if it’s been losing efficacy.

People who use products with adhesives (the main thing is beauty products) like nail products with acrylates wether that's acrylics, gel, nail glue or sometimes even nail polish.

Have you ever been aware or fear developing this allergy because of them?

It's present in so many medical products from dental fillings and j pouch adhesives and others.

We already have a flimsy immune system to begin with!

My questions are:

Did you know about this?

Have you ever worried about this kind of thing?

Did you stop using those products because of the potential of developing this allergy?

What are some precautions mesures you take about acrylate exposure?

So I've had UC since I was 19, I'm 30 now. Since 19 and starting treatment, I went into remission and stayed like that for about 26 years. Then, I started to get symptoms again, and THEN my life became a nightmare when I had an infection by clostridium difficile, which spread my UC and had me having symptoms I didn't have since my diagnosis.

I've tried prednisolone and mesalazine from the beginning, but I've been on azathioprine for like 10 years now. When I had the bacteria infection and I didn't seem to get fully better, there was a doctor that wanted me to start on bios. However, it scared the hell out of me, because I live abroad, and would be tied to a hospital that I would have to go for an infusion every 8 weeks or so.

I don't know if I'm gonna be living in the same country in the next years, so making that decision of changing from a medication that can be easily carried on a trip to a bio that ties me to a place was so scary. A different doctor wanted to keep me on azathiprione, which I did and still am on it.

But I still wonder if bios are what I should go for. I had to quick alcohol because it makes me bleed everytime I drink, I still have episodes of bleeding eventually, and basically every day I still have at least once to rush to the bathroom. That kind of also restricts things I can do. Being in the middle of nowhere without a toilet worries me, etc.

I'm wondering if anyone here was ever wondering if changing to bios was the right choice, and how was that. Ofc my case is at the stage where I can maybe go for that treatment or not, I understand many people didn't have another choice.

Anyways, it seems like a big decision you cannot go back from, but I wonder what would be the best option for my life.

I've been in remission from UC since February however I've started to get migrating joint pain in my hands, fingers and wrists for the last 6 weeks varying from mild to moderate. I saw my consultant yesterday and he is referring me to rhumatology but also said it may go away on its own.

I already have acute uveitis (another auto immune condition in the eyes) although that is also well controlled too. Just feel like I can't catch a break !

Just wondering if anyone experienced similar in remission and how you cope/manage it? I'm quite scared of where this could all be heading.

Thank you so much for reading 💖

I'm traveling for 4 and a half months, and have to take all my medication with me. Amongst the other things I'm taking, I use enemas, 1 every 2 days. If you've used those you know how big the boxes are. I'm going to bring 10 boxes with me, and that's gonna count as my carry-on luggage. Has anyone had experience traveling with big quantities like this? I'm not really scared of customs in this sense, because I have the prescriptions, but more so as when going through X-ray (people working there tend to be extremely annoying).
Would love any advice anyone can give me on this!

Hey,

Hope this is not too long, tldr would be:
When do i know i am ready for work again after being sick from a flare?

Long version:
i am currently in a flare and home for 3 weeks now. I live in Germany so pay is not an issue for now at least.

Beforehand I was never severely sick and I don’t know how to think about it. My doctor said people used to stay in the hospital for months and offered to sign me off longer. I firstly declined but eventually got back to him and extend week to week.

I failed with entyvio and got set on infliximab and high dose prednisolon (80mg and later 100mg again).

Now i am at 50mg pred and I feel tired but overall have no pain or urges which i think is great. I still have appointments multiple times a week drawing blood and stuff.

When asking my doctor directly he couldn’t really tell me how sick i am or bad I am. I feel ok so I think I need to work again which would be fine in Homeoffice. On the other hand the doctor or consultation people all treat me as a really sick patient. They talked about problems I don’t have. The sickness is reality and all but this was really wierd. Maybe I just don’t realize the full extent of it?

I think a lot about that and don’t really know how to go forward.

How did you go about this in the past?

How do you know you have a med or food tolorence? I’ve had a convo number of times about mesalazine asking if i’m intolorent to it but keep getting told no? I’ve switched from octasa 6 tabs a day to 3 then to granules and now switched brand to pentasa but always see them in stool.

I feel great in myself but everyday feels exact same it’s like I end up getting slight urgency that I need to go after either taking my meds or eating something, I’m on rinvoq 30mg 14 months in and also on suppositories aswell.

Also those in remission how many times do you go? I go between 3-5 times depending on what i’ve eating or how active I can get in the day but stools are always like weird shape they’re normal but thin

I've had UC for gosh since 2016. I'm an M 28.. not having insurance is literally a death sentence almost. I goto the restroom like 20 times a day. All blood, fatigued, in pain. On budesonide, but it seems to not be working anymore, on canasa, and that aint helping anymore. Every day, it gets worse to the point where i genuinely do not wanna wake up anymore to this nightmare. The fact that all these biologic companies stopped offering patient assistance is ridiculous. My Gi doc is like you need your medication and you need a colonoscopy and im sitting here like yea easy for you to say but since i dont have insurance and this stupid new job insurance doesnt start till 90 days leaves me with nothing. Like wtf am i supposed to do. I goto the er, and they do nothing and say goto GI I goto GI and they said you need this, but glance over the fact i can afford it. Then to top it off say if symptoms get worse goto the hospital (and then they hospital doesnt do fckall) Im just so tired the fact my taxes pay for medicaid/medicare whatever its called and i cant even get assistance from them is so disheartening, even when i got laid off back in August snap ebt said yea you make to much from unemployment so kick rocks (which doesnt even cover my rent so i had to borrow from friends and family) its like this god forsaken country is just out to get me lmao. Anyway, yea rant over back to suffering, clutching my stomach since there isn't anything i can really do but cry, eat, shit blood, and then cry some more 😐

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!

I was on Humira forever things were fine (one injection a week). Doctor recommended Rinvoq since it’s newer and just a pill. It’s been 5 months now but the side effects are getting me. I swear it’s made me really anxious, have acid reflux & just overall I never feel right.

I’m thinking about asking to go back to Humira.

Any thoughts/suggestions or other ideas that any of you have experienced? Feels weird to go backwards in a sense since Humira is older but tbh I just think the Rinvoq effects are too much. I’m early 30s if that helps.

>At Week 12, 87% of MDP [Mediterranean Diet] participants had FC [calprotectin] below 100 μg/g, the threshold widely used to distinguish low from elevated intestinal inflammation, while only 25% of CHD [standard Canadian diet] participants reached that level. In the CHD group, FC increased significantly (p = 0.0488), and the Partial Mayo Score, a standard clinical measure of UC activity, also rose significantly (p = 0.008). The MDP group did not show those deteriorations.

Original study: https://academic.oup.com/ecco-jcc/article/17/10/1569/7140490

h/t https://www.reddit.com/r/microbiomenews/s/cEhvZY65Kl

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 :)

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.

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

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 ❤️‍🩹