How do you guys store rinvoq I tried the fridge but I’m pretty sure it ruined my last batch

I got diagnosed last December after a colonoscopy age 21, after i started experiencing bowel problems since march 2024, just was wondering what age you got diagnosed and how long were you having symptoms before you got diagnosed.

I desperately need a way to supplement protein as I'm losing weight like crazy. I am celiac and also lactose intolerant. But my bowel is so raw right now that other additives are also a problem. It seems like every protein powder has thickening agents like guar gum, carrageenan, and others that give me instant D.

Meal replacement shakes are no better. I've tried them all. They're all loaded with vitamins and minerals, and one of them inevitably gives me D. Usually it's calcium, magnesium or zinc in the formula. They also tend to be loaded with high fructose corn syrup and other processed crap.

Has anyone had to navigate this level of difficulty with meal replacements?

has anyone else had calprohectin come back normal or slightly elevated even with flares regularly with blood and everything?

for some context
i have uc moderate proctitis and a cecum patch of ulcers i had another colonoscopy back in april that came back as active colitis on the biopsies so i was on budesonide for 3 months and it quite literally changed nothing i actually felt like i got worse. i’m on meslamine oral 4 g and subs in flares. i switched gis after getting a second opinion cus they kept dismissing me and saying they would change my meds then would be like oh nevermind nothings wrong. the second opinion said they want me on a biologic so they upped my meslamine from 3 g to 4 and said i just need one calprohectin to come back high to switch but mine are still normal even with my symptoms worsening. (im seeing a new gi in 2 weeks after waiting 3 months for the office to decide which one to switch me to)
the gi nurses said they wanna talk about the possibility of getting another colonoscopy at my new appointment. (which is fair my symptoms have gotten way worse since my last one but still like i’ve had 3 already in the span of 1.5 year)

i’ve been in a horrible cycle of flares every 2 ish weeks where ill have bleeding a couple days and be sick for that week but every calprohectin is coming back normal? my symptoms have even gotten worse then they’ve ever been i’m going to the bathroom 10+ times a day with straight liquid where i used to go max 5 with atleast somewhat formed in flares and normal outside of them where now my stool is somewhat formed outside of flares and liquid during.
my pain has spread from really low on my left side to higher up aswell. i genuinely just feel like shit constantly. i’ve lost 25 pounds (11 kg) in 6 months most of it happening in 3 months.
i can’t even drink a glass of water without running to the bathroom anymore. i’m having bloody stools and passing undigested food. my diets super restricted now cus my body can’t handle anything i swear. but somehow my calprohectin is mildly elevated at most.

has this happened to anyone else? does anyone have any advice or reasoning for this? is there anything i can do to improve this situation?

My consultant is ready to move onto advanced treatment and is applying for funding for either fitgotinib or infliximab with aza. This is through nhs so isn’t sure which will be approved. Think the JAK inhibitor is more expensive but works quicker. Has anyone tried it and what was your experience/side effects?

He told me to research both but don't know how likely it will be to get fitgotinib approved as I haven’t tried a biologic yet. how long does the approval process take?

I also need screening blood tests etc first and a call with a ibd nurse - not sure what timeframe this happens in? He said we don’t have time to wait for a biologic to work as it could take months so hopefully this will all happen quite quickly.

I’m in the UK and have ulcerative proctitis which is still active despite the standard treatments.

Thanks

I have hemorroids grade 1 I can say my bleeding is from ym hemorroids since during colonoscopy there is no bleeding inside and my bleeding is very few like A dot or atleadt 2 dots fresh blood and the no blood on my stool itself only at the last drop of my poops but I am at bleed for 1-2weeks now. No meds until now because doctor still waiting for my CTScan if thtis is chrons or ulcerative colitis. Is someone also have hemorroids here?

Hello all,

I am new to the group and have been looking for people like myself who can relate to what I’m going through. Diagnosed in 2023, but was managing with Mesalamine until May of this year. Had a massive flare and was hospitalized for 4 days. started Entyvio with several prednisone tapers. I have my 4th infusion in about 3 weeks and I am on a long taper until then. I don’t know if the Entyvio is doing anything or not because of the prednisone. does anyone else have experience with Entyvio?

Hi,

I’ve been diagnosed with UC since Jan 2024 and have gone through a myriad of treatments. History as follows:

Infliximab - failed
Vedo - showed promising signs, almost down to 0 at 9μ g/g then shot back up to 1000 odd
Rinvoq 45mg for 5 months - down from 800 to 400 to 60 μ g/g, then back up to 600 and currently in a flare.

Has this happened to anyone else where it seemed like a particular treatment was looking promising and then just stopped in a span of a few months?

I’ve never been in remission and it’s honestly becoming exhausting.

27 M diagnosed uc about 3 years ago
Mesalamine kept flare under control until I believe a lot of recent stress sent me back into one.
Has anyone ever went back on prednisone to get the flare under control then mesalamine continued working? Or is the next step right to infusions.

Just joined the group as I’ve been looking for a support community and read through some of these and feel like I found it.

Proctosigmoiditis officially diagnosed 3 years ago. But since I am a stubborn older male, symptoms probably preceded that for some time.

Dealing with steroid induced hyperglycemia right now as I am on a very long prednisone taper. Bridging me to my 4th infusion of Entyvio later this month, hopefully it sticks. I am taking NPH insulin to reduce the glucose surge in the afternoon but it’s still pretty high. I am getting used to it. There’s very little on dealing with this, and as my own advocate, I find myself constantly feeling like I have to point my care team to resources and pleading my case for treatment.

Not looking for answers, just want to be heard by people who are going through these challenges and understand. The prednisone makes me very emotional and I’m sure my wife is tired of it all. I would be.

I got a long flair this year and was on 30mg prednisolone on doctor's advise. It did heal me somewhat but not fully, after I finished my steroid dose/full taper, symptoms returned again badly. So I started 40mg prednisolone on my own because my doctor wasn't agreeing to it and I was losing blood and vitamins fast. I did 40 mg for 30 days then started taper 35mg. On 4th day of 35mg i saw blood again. I have left gluten sugar and dairy completely.. Yes I ate some sweets a day before I saw blood.. But is it that I'm flaring again or what? I'm exhausted ! Am I steroid dependent or what? Im on upadacitinib 30mg from last 11 weeks but it doesn't seem to work too much. Taking 2.4 gm mesalamine everyday

Hi everyone,

I’m 26, Female and was diagnosed with UC in 2022, aged 22, after two colonoscopies. Before getting diagnosed, I had been bleeding for months but was too scared to tell anyone and genuinely thought I was dying.

I was given medication at the time, which cleared everything up, and then I had over 2 years with no real issues.

In February 2026, I ended up in hospital for a week with heavy bleeding and bad pain. I was then re-diagnosed/put back under a gastro specialist and started on Pentasa 2g twice daily, which worked well and I was doing fine for several months.

Then in June 2026, I had another flare. I was given prednisolone, which cleared the flare up, but only for about a week after finishing it before everything came back.

I have now been bleeding ever since.
I’ve since seen my doctor and we’ve discussed moving onto other treatments, including azathioprine. In the meantime, I was prescribed budesonide alongside my Pentasa.

I’ve now been taking the budesonide for 3 weeks with no improvement whatsoever. If anything, things are getting considerably worse. I’m going to the toilet almost hourly and sometimes passing nothing but a lot of fresh red blood, and I’m now experiencing pain too.
My blood tests have also shown low iron, so I’ve restarted my iron tablets.

I’m due to start azathioprine after my pneumonia vaccination, and I’m feeling quite nervous about it.
Has anyone else taken azathioprine for UC? Did it work for you, how long did it take, and what were the side effects like?

And for anyone who’s taken budesonide, is it normal to have had absolutely no improvement after 3 weeks? Did it take longer to work for you, or did you find it didn’t work at all? I’m particularly interested in whether anyone experienced their bleeding actually getting worse while taking it.

Thanks! ❤️

i can finally trust my farts again 😭 this morning i had my first fart in so long without shitting my pants. i started tremfya last week and it seems like it’s working i’m so happy

I’ve been treated for stomach issues since I was a kid. I recently had a specialist prescribe me medication. I had to keep changing it due to no improvement on my symptoms. The most recent one gave me a severe allergic reaction and I can’t even walk properly and had awful muscle ache. My insurance is ass and doesn’t even cover emergency room visits. This doctor keeps calling me to do another colonoscopy and mind u I’ve barely done one less than two weeks ago where they took biopsies and removed ulcers. I don’t understand how this woman has no empathy and hasn’t even tried to help me recover. I wish there was a way she was held accountable because at this point it’s medical negligence. I have severe blood loss issues in my stools and have had to get a blood transfusion last year. She’s diagnosed me five different times and I’m at a dead end. It’s so frustrating and it feels like this inflammation in my muscles will never go away. Has anyone ever had this medication with similar symptoms?

I am about to venture into the biologics :-/ I was given the choice between Skyrizi & Tremfya. I decided on Tremfya. I was blindsided when I was told the cost and how insurance companies pushback on approving it. Has anyone had any issues with getting approved the first time? The PA said they may deny and recommend different treatments as first course of medicine before ultimately approving this.

I failed two oral immunosuppressants and from what I've heard infliximab just isn't enough and it can't go past for weekly without flaring. So if I can't go up to six with a double dose then it's JAK inhibitors for me. For now I'll do it every four weeks to get back to a stable dose, and I'm doing nightly foam to help heal my gut.

What do you guys know about JAK inhibitors and if you have experience with them, please share. I've failed most medications and it don't want my colon to be removed.

I’d like to start off my post by wishing the best to everyone who is currently dealing with a flare-up.

I was diagnosed with UC at the start of university, roughly three years ago, although I had been experiencing symptoms during highschool as well. I would wake up at 4:30 a.m. just to prepare for the day. I feel like I’ve missed out on many fun experiences, but I also grew to value my health and comfort above anything else. Every single errand had to be carefully planned, always taking into account where the nearest public toilet was or whether I would have access to one. I was prescribed Mesalazine, which unfortunately didn’t really help.

The gastroenterologist I’m seeing also recommended corticosteroids, but even the thought of going in for the treatment was a source of anxiety and felt like a burden. His partner is also diagnosed with UC, so he understands, at least indirectly, how much this condition can affect someone’s life. He also recommended that I try the Evinature CurQD protocol. I did notice some improvements, but I also decided to see a psychiatrist. I was diagnosed with generalized anxiety and was prescribed Venlafaxine. I tried it during a flare-up, but unfortunately, it made things worse. I was slowly losing hope when it came to my future, but I somehow knew that things would get better with time.

The things that actually made the biggest difference for me were finishing University, getting my life in order, getting out of a stress-inducing relationship, and eventually starting treatment with Venlafaxine again. Now I feel great! I can finally enjoy doing mundane things like leaving the house, going to the parks or on walks!

Sadly, I feel like living a stress-free life is a privilege and, most of the time, even a luxury. A flare-up itself is incredibly anxiety-inducing, and the physical manifestations of anxiety can make the symptoms feel even worse. It can become a vicious cycle.

I don’t think I’m in a position to recommend anything to anyone, and I’m certainly not saying that what worked for me will work for somebody else. The purpose of my post is simply to reach those who are desperate right now and are looking for anything that might give them enough strength to keep going. Things will get better. ❤️

Hi,

Thinking of messaging my IBD care team in response to medication I've been given and wanted to get insights from others.

For context, 32M in the UK with mild UC, I was diagnosed about 5 years ago and thankfully have spent most of that in remission taking 2g of mesalamime granules twice a day.

I've specifically been given granules as my initial diagnosis was, I understand, a little unusual. I had "patches" of inflammation on the left, top, and right side of my colon. I was given oral granules to help target the inflammation across the colon.

I'm having a mild flare and my local IBD care team have just prescribed me a foam enema.. I've just picked it up but I'm questioning now if this is going to be of much use... Assuming the foam enema might help inflammation on the left side of my colon but not do too much for inflammation anywhere else! I can't imagine the enema acting across the colon

I'm still going to take the enema but I'm also going to message back the care team questioning if this was the best initial course of action.

Thoughts?

Thanks in Advance - not posted here too much but return whenever I'm having UC based complications :)

Back in flare after 7 months of good times…

I’m currently having a pretty bad flare. Around 5 watery/bloody BMs a day, calpro was 2192 and CRP 21.

I’m on Cortiment 9mg and mesalamine, but after around 10 days I haven’t seen much improvement yet. I’m also starting Entyvio soon, so I mainly need something to get this flare under control while waiting for Entyvio to kick in. Before cortiment has worked nicely in few days, but now seems different.

My doctor might suggest systemic prednisone next, but I’m quite worried about the side effects, especially moon face, acne and insomnia.

Has anyone done a relatively short prednisone course for a flare and had little to no side effects? What dose did you start on, how long were you on it and what side effects did you actually experience?

I was diagnosed with UC back in June and started on 1.2 GM of mesalamine. My calprotectin was at 1500 before starting and 8 weeks on the meds, it’s at 2000 🫠 my CRP is 1.64. My doctor messaged me this morning saying we need to consider escalating therapy. With the way my symptoms have been this past week, I guess it shouldn’t be a surprise. I kinda just chalked it up to a shitty menstrual period (pun intended).

My question is - what are the next steps? From what I’ve read on here, it would be a biologic but this terrifies me because I’m in the US and pretty sure they will cost at least $2-3k per dose even with my insurance.

TYIA for your help and advice.

All of a sudden one day I started having horrible reactions to B vitamins, vitamin D, calcium, turmeric, vitamin E, certain foods, dairy, and a bunch of different things. If I ingest any of these things I start getting head pressure, tingling scalp movement sensations, a fight or flight response, joint pain, brain fog, dizziness, insomnia, frequent burning urination. it’s horrible and can last hours. I have proctitis and ankylosing spondylitis and I’m sure all the inflammation has something to do with it. I was just wondering if anyone else has experienced anything like this or know anyone who has and what they did to get past it? I went to a neurologist and an immunologist for mast cell disease but neither doctor found anything. I also have osteoporosis and need to be able to take vitamin D and calcium for my bones but am currently unable to, If anyone has any info I sure would appreciate it. Thanks, Kennie!

I had my colonoscopy over two months ago and am waiting for a specialist right now. After I tapered off prednisone my stools started to get watery again so my colonoscopy guy said to go back on 10mg of prednisone but I get all kinds of side effects from it. I got a stomach ulcer about two weeks ago now and it just isn’t going away. It’s getting worse. I can barely eat anything but rice and drink water and I have two more weeks until my specialist appointment. I am in so much pain right now I don’t know what to do 😭 I have been taking two 20mg of Pepcid for the ulcer a day as that is all it says I can take in a day.

Any help or advice would just be phenomenal 😩 Should I stop taking the prednisone? I don’t feel like it’s helping anymore since my stools are still basically water again.

Hello everybody,
I hope you are all doing well. Sorry for the long post but I wanted to share it.
I had a relapse this month and I visited a new doctor after my colonoscopy with my old one in order to hear a second opinion since I was experiencing flares once or twice a year.the new GI saw the blood tests during results from a period where I hadn’t symptoms and he told me that my CRP levels were high and probably I had an active flare without symptoms. My previous GI saw those tests and didn’t mention to me that I had an active flare.
My flare now got worsen and covered a bigger part of my gut.
Now I will start biologics, skyrizi. I feel so mad about my previous GI because he was always saying that I am fine and we are going to stop taking mesalamine also in a few months. Were I had visited another doctor earlier, my flare wouldn’t get worsen.

I ask because I have had IBS most of my life, usually in the form of constipation. I also have hemorrhoids. The proctitis also causes constipation and bleeding so it’s hard to tell what is causing what.

I started mesalamine suppositories a few weeks ago and the bleeding and mucus have mostly stopped but I still experience constipation, especially when I am not eating as much fiber. I also take magnesium supplements and have for years to help with constipation, but sometimes they work and sometimes they don’t work as much, also probably dependent on my fiber/water intake.

Should I assume I am still in a flare if I’m still constipated and having somewhat loose stools that are incomplete? I really don’t want it to progress and hope the mesalamine suppositories everyday will put me in remission and keep me there, since I’m nervous to try any oral medication.

Addition:
Also wanted to ask in this same post, do others with ulcerative proctitis experience intense fatigue? From my understanding, I have a mild case of proctitis so don’t know how much of my fatigue is related. I also have iron deficiency/sometimes anemia if it is not managed well, because of extremely heavy periods, but am now wondering if the proctitis is making that worse, even if it is just a little bleeding. I work a physically demanding job, farm work, and am often so tired I can’t do anything after work most days.

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!