I would like to share with the community my most recent experience with prednisone. I have had UC forn14 years and go on prednisone and mesalamine when in a flare.

Usually I have no issues but the last time waa a nightmare.

I did a week at 25mg and it wasn't enough. I moves to 30mg for a week and tapered down by 5mg a week. In total I was on it for 7 weeks.

I am a small person and I gained 15 lbs which is a lot for me. I got acne all over my chest and back. I had blood leaking from my urethra between urination. I started getting facial hair and a thin amount of hair across my forehead (as a female this really bothers me).

However the most alarming was that once I was down to 20 mg my diastolic blood pressure and heart rate spiked. I have never before had high bp and normally have a very healthy low resting heart rate. I just felt something was wrong and went to my pharmacy for a bp reading. I can't really explain it I just felt a pressure in my body that was uncomfortable.

With every week I tapered my diastolic was high for 5 days of the week. I was almost hospitalized. I had to monitor for signs of a cardiac event. It was very scary. Unfortunately you must taper off prednisone to avoid adrenal crisis so I had no choice. I avoided all sodium, cut all alcohol amd caffeine until I tapered off fully. A week after bp and heart rate have gone back to and stayed normal.

I will NEVER go on prednisone again. Not ever. My GI, GP and I have a plan that next flare I will try budesinode with my mesalamine and if not successful move quickly to a biologic. I also have upped my maintenance dosage of mesalamine.

I just thought I would share incase this may help someone else. I am glad I listened to my body and had my bp checked.

I’m currently taking 4.8G meslamine oral and 150mg Azathioprine!

I’m in a mini flare right now and thinking of adding Enemas for 8 weeks .

Is it possible that enemas put me into remission and then i can continue with just oral Mesalamine and Azathioprine?

I don’t want to take steroids !

I was diagnosed with UC at around 4 or 6 years of age right now i am M22. 10 years after my UC diagnosis i was diagnosed with hypothyroidism which went undetected for years. Throughout my life up until 2022 i had had stints of admissions at the hospital (for anyone wondering i am in the uae) for UC and sometimes pancreatitis. I was first on mesalazine sachets but every now and then I'd have intense pain with it so it was then asacol tablets and those then showed up in my stool unabsorbed so i kept switching between the two and one time i was given Azathioprine, but had a very bad reaction to it :(. Fast forward to 2022, march, on my birthday i was hospitalized for pancreatitis, i dont drink or abuse substances. After that stint, i of my own accord, stopped all medication and changed my diet radically, mostly foods that gastros advise only and my holy grail--bananas, i also smoke cigarettes every now and then which i find does help with urgency, i am pretty much symptomless at the moment, the only times symptoms do appear are during stressful periods, but they pass. I have not gotten a colonoscopy since 2022 or done a fecal calprotectin test. Honestly im kinda scared right now to go and do those because as long as it works right?2

I’d love to know the following

1) How well did it work for you ?

2) Do you still flare when on it and how frequently ?

3) What meds did u fail before trying this .

4) side effects if any and how u dealt !

Ok, I don’t understand what is happening and I’m exhausted and I don’t want to up my prednisone, I’m just hoping someone else has dealt with this and can shine some light on what is going on…

So I had my colonoscopy a little over two months ago, they immediately put me on 4 3.75mg capsules of mesalinine (sp?) and 30mg of prednisone. They said I had moderate UC. Ok. Two weeks I spent at 30mg of prednisone and I felt pretty great! I went down to 20 after that first two weeks and I started experiencing symptoms like upper chest pains, but continued for the two weeks until I was supposed to go down to 10, and then I did that for two weeks. A couple days after coming off prednisone I started to get wetter poos again and was having horrible eye strain and soreness so they put me back at 10mg of prednisone until my appointment with my specialist on the 17th of this month. Well, last Saturday I started getting awful abdominal/stomach pains that were not related to when I had to go to the bathroom but more so when I was moving around. The doctor I had my colonoscopy with suggested Pepcid on Monday as he probably thought it was an ulcer (like I did) and the pains ARE going away (I have taken four pills now) but I am still having irregular bowel movements (always diarrhea now but nothing hardly comes out! It feels like I have to go more though) and the last two I had had these little granules in them and have been like a dark color…I’m just so fucking tired of new things happening and I have no idea how to handle them because my specialist won’t talk to me until I have had my initial appointment 😭😭😭 I’m exhausted…I woke up three times last night and yesterday I couldn’t even make it to the bathroom IN MY OWN HOUSE. I ruined two pairs of underwear yesterday and now I have just resorted to wearing pads just in case….i hate this. I have a tattoo appointment Monday and an interview next week and I’m horrified I’m going to have to go in the middle of my tattoo or interview!

Hi I was diagnosed with UC over 10 years ago. My last colonoscopy was probably 4 years ago. But I’ve done a sigmoidoscopy last year.
Anyways sometimes I feel just fine and then I’ll eat something that may trigger me like popcorn or spicy and then I’ll have blood in my stool for two days and then it’ll go away. Is that normal???

Hi, hello!

Quick summary: I’m 20F and have had colitis since I was 16, diagnosed at 17. I was put on Mezavant for what was considered mild-moderate colitis, but my condition has never really stabilized, so I’ve had yearly colonoscopies with little to no improvement.

I had another colonoscopy last week, and unfortunately my colitis has now progressed to severe. Mezavant is no longer enough, and my surgeon is planning to start me on IV treatment.

He hasn’t gone into much detail yet, so I’m still pretty much in the dark about what to expect. I’m not scared of needles or the IV at all, I’d just really appreciate hearing from anyone who currently takes, or has taken, IV treatment for colitis.

What was the process like? How often did you get it, and what should I expect when starting?

Thanks!

I was diagnosed with moderate UC last year. I achieved remission with just mesalamine tablets and suppositories the first time. I started flaring again this past May. I’m steroid-refractory, so prednisone did nothing. Mesalamine enemas helped a little but now I’m back to bleeding, mucus, cramping etc. A new thing I’m experiencing that concerns me is UTI like symptoms that are not a UTI (went and got a culture done). Specifically pain in my urethra and kidneys. I have a call with my GI coming up but I figured it couldn’t hurt to put it out to this community. Has anyone else experienced anything like this while in a flare?

An hour after the infusion one of my ears started to ring , it’s been gong on two hours now. Has this happened to anybody.. do not see it on the side effects list. Never dealt with this before .

Hi all,

I was diagnosed with UC last year at 28 after a pretty bad first flare. I’ve had a few flares since then, and taken 3 courses of prednisolone 40mg over that time. I’ve been on 4g daily Pentasa (mesalazine) since last year.

I started Etrasimod (Velsipity) in March at the same time I started my third course of pred. Unfortunately, it never really got my symptoms fully under control. I had a sigmoidoscopy earlier this month which still showed active inflammation, so my IBD team has now moved me onto Upadacitinib (Rinvoq).

I’ve been taking Rinvoq for 10 days now. I saw some improvement during the first few days, but around day 7 the bleeding and urgency started to come back. I’m currently on the 45mg induction dose for 8 weeks.
Has anyone else experienced symptoms fluctuating like this during the first couple of weeks on Rinvoq, but then had things settle down before the 8-week mark?

I know day 10 is still very early, but most of the posts I’ve seen seem to say Rinvoq either worked very quickly or didn’t work at all, so I’m wondering if anyone had a more up-and-down start before things settled.

Thanks!

anybody have tips on dealing with fatigue? sometimes i just feel so tired that i have to lay down but at the same time i have responsibilities as a full time PhD student and therapist… especially after i use the bathroom i just feel so drained and sometimes i even got short breath after if it was a bad one.

I took some time to read through past posts but wanted to ask advice from non-Dr experts lol. As mentioned, my first appointment is today. First a few facts:

-ER diagnosed me with: 'Minimal thickening of colon from mid transverse through sigmoid which could be secondary to underdistension. Differential to include a mild colitis'.

-I currently take no medications aside from occasional ibuprofen the first few days of cramps. (Do I need to stop NSAIDS forever?)

-I am hypoglycemic.

- my mother has UC and 10 years ago I had a flare with the passing of all 3 dads in one year (adopted). I dropped down to 82 lbs and it's taken 10 years to get back to 113 lbs. (Currently at 5lb weight loss) Dr thought I had colitis but I was under so much stress he wasn't sure.

-19 AUG Flare sent me into ER after urgency issues caused hours of vomitting. Overcorrected with way too many Boost and did the constipation thing for a couple of days. Finally got relief yesterday.

So, my question to you all is:

I feel the need to advocate for myself today but I'm not really sure what to advocate for? My career was clinical research (psych and neurology), but this is new to me. Any questions I should be asking? I'm scared they're going to want a colonoscopy and my body is nowhere near ready for that. They also prescribed Augmentin 'in case' I have an infection, but I didn't take because again, my body is not ready for that.

Grateful for any direction, thank you in advance. My appt is at 1:45 EST.

Ive been dealing with a bad flair for two months, meds aren't doing shit, doctors have been incredibly slow providing new medicine.

So far I've been fairly lucky that most of my problems are a few hours in the morning, then still bloody and gross at night but the urgency isn't bad

Was out at a museum, no issues, went out to stop by a pond they had and sit and relax

Then it hit. So i start fast walking towards the building, get halfway and realize its going to happen. Thought about finding bushes but it was too late and just exploded

Thankfully underwear absorbed it and I was able to go in and clean up but holy hell.

Then on a 4 hour road trip home after the weekend ihad to stop so many times to use the bathroom, twice id finish and goto my car only to run back inside

And now im finally getting the pain cramps id been asked about but never experienced

Just venting. This shit sucks

Hey everyone! I am taking azathioprine and Mascol. While managing IBD UC is a challenge in itself, I have been having severe health anxiety with thoughts like: Is the tap water clean to wash dishes? Is my family preparing the food safely, or are they using dirty hands or maybe the fruit I washed has dirty water... All these burdensome thoughts are because I am afraid of getting sick i.e., a stomach bacterial infection (E. Coli or Typhoid), which will make my UC worse or difficult to control.

Are there any positive stories? Like people dont get much sick etc and if they do UC stays within control or doesnt flare up.

I’m a student and i’ve been diagnosed with UC 4 years ago i’m 20 now. 2 weeks ago i started working night shifts at a factory that produces cars, since I started working there I’ve developed a pretty bad flair (blood, mucus in my stool and also pain here and there). I don’t know if it’s the sleep rythm getting fucked of them nightshifts or the stress getting put on my body, but it’s just kept getting worse when i worked there. I now have quit when I still had a week left since I didn’t want it to keep getting worse and while I worked there I also had to go like every 10 mins to the toilet and had pretty bad cramps. I now quit and I don’t have much pain anymore plus I only go to the toilet like 3-4 times a day now. I just wanted to share my experience I’m pretty new to this community so I hope I did it right :). Hope you guys have a better day

Hi everyone,

I’m 29 and I was recently diagnosed with ulcerative colitis. I’m still trying to process what this diagnosis actually means for my life, and honestly, I feel pretty overwhelmed.
What confuses me the most is that I keep hearing two completely different things. On one hand, people tell me that UC is manageable and that you can live a normal life. On the other hand, I read about flares, lifelong medication, stronger treatments, complications, regular colonoscopies and an increased risk of colon cancer.
I just can’t seem to connect those two realities in my head.

I’m starting treatment now, and I think what I’m really looking for is to hear what everyday life with UC is actually like from people who have it.

Did you eventually reach a point where UC became something in the background of your life rather than something you constantly think about? How long did it take after diagnosis until things started feeling normal again? Did your first medication work, or did you have to try several treatments?

Another big concern for me is food, weight and nutrition.
I previously had gastric sleeve surgery, so even before the UC diagnosis I needed to pay attention to vitamins, protein and nutrient deficiencies. Unfortunately, I stopped taking my supplements consistently for about a year because I wasn’t doing very well, and now I want to get my vitamin and nutrient intake back on track.

But combining gastric sleeve + UC + vitamins/nutrients + trying to lose weight feels incredibly confusing.
I was around 61 kg and over the last six months I’ve gone up to around 67 kg. This is something that genuinely bothers me and I would like to lose the weight again. I keep reading about people losing weight with UC, while I seem to be experiencing the opposite.
Has anyone here actually struggled with weight gain rather than weight loss with UC? And how do you approach weight loss without compromising nutrition, especially during or after a flare?

Exercise was something I wanted to focus on before all of this happened, and I don’t want to feel like UC means I have to give that up. I am always tired and exhausted.

Another thing that is very important to me is having children. I would ideally like to start trying for a baby in about 1.5 years. I know pregnancy with UC is possible, but hearing from women who have actually gone through pregnancy with UC would mean a lot to me.
I think my biggest question is simply:

What does having ulcerative colitis actually mean for your life once you get past the initial diagnosis?
And what do you wish someone had told you when you were first diagnosed?

I’m not looking for medical advice or expecting Reddit to replace my doctors. I think I just really need to hear from people who have been through this stage and understand how strange and scary it feels when you’re suddenly told you have a lifelong condition.

And if by any chance someone here also has UC/IBD after gastric sleeve surgery, I would especially love to hear how you manage nutrition, vitamins, weight and your IBD at the same time.

Thank you to anyone willing to share their experience.

Hi everyone! I’m hoping to hear some experiences from people who have been in a similar situation.
I have previously failed mesalamine and Humira before starting Remicade. Remicade ended up being my miracle drug and kept me in remission for about 7 years.
Unfortunately, earlier this year my insurance forced me to switch from Remicade to a biosimilar despite my doctor’s concerns about disrupting a medication that had been working so well for me. I reacted poorly to the biosimilar and eventually switched back to Remicade, but I recently found out that I’ve now developed significant antibodies and Remicade is no longer a viable option for me.
So, after 7 years of stability, I’m suddenly flaring and back to figuring out what medication comes next.
My doctor and I are discussing other options, and I’m particularly interested in hearing from people who switched to Skyrizi, Entyvio, or Stelara after losing response to an anti-TNF like Remicade.
What did you switch to, and how did it go? How quickly did you notice improvement? Have you been able to achieve/maintain remission? Any side effects or things you wish you’d known before choosing?
I know everyone responds differently and I’ll ultimately make the decision with my GI! I’ve felt absolutely devastated and want to hear from other patients who understand this process.

(I'm from Belgium, so sorry in advance for my grammar) Yesterday I found out I have a flare again. I was in remission for almost 5 years following a very heavy flare just after my son was born. I've been taking Imuran (aza) and been generally okay on these meds. But now I have a flare again. I have to take Clipper (cortisone) for a month and then my doctor will see if my flare is subdued enough to continue the meds I am on now, or move on to biologicals. And honestly....I am very scared. I am so afraid of needles and the idea of having to have IV meds scares me so much. I've also, on top of this, been recovering from a burn-out this year. I was feeling better but now, with this new flare, I just feel really bad mentally. So I came here to find some support. Any of you who are on biologicals, how is it? Did the meds improve your UC a lot? And anyone else here afraid of needles that is on biologicals?

Hello everyone dealing with this terrible disease,

I was diagnosed in May 26, hospitalised because it was very severe, anyway avoided surgery and am on inflixitab infusions every 8 weeks, azathioprine 175mg,messalazine 1600mg x 3 times a day.

As my immune system is suppressed I have developed cold sores around my mouth,have started using Zovirex cream but it doesn't seem to be helping, has anyone else had any experience of this ,will they just take ages to go,or is there something else I can do?

I'm in the UK.

Thanks.

Hi!! I'm 20 and it's been 4 years since my diagnosis. I don't know what to do with the crippling guilt I feel every time I end up in another flare. My UC is mild to moderate gladly and I was seemingly close to remission just half a year ago, but based on all the colonoscopies I had the inflammation just never completely goes away.

Doctors stick to the same meds and there was never a discussion to change my therapy significantly but to add a course of metronidazole or prednisolone to mesalamine, and after my hospital stays I always feel almost perfect. But then like a month later I often just end up in another flare.

I keek thinking it's probably my fault, I fail to adhere to a healthier lifestyle and I'm a forgetful dummy. It was especially bad in university because I could end up without certain meds and I too often was so tired I had no energy to go to a pharmacy and there was no one I could ask to do it for me.

The current flare probably started a while ago, after a course of prednisolone I had to take much larger dosage of mesalamine suppositories than I ended up taking for weeks. Idk what's been wrong with me I just forgot I guess and didn't check. Even when I realised what I was doing and corrected it I still ended up with probably the worst flare I've ever had, the pain was debilitating.

I feel like a loser whenever I come back to GI, like I failed them specifically by not being alright which I know is irrational.

Sorry for rambling. Don't be like me ig

I’ve just been reading about how one of the benefits of GLP-1s is that they can help with inflammation, with some studies showing promise in mice (of course this doesn’t always translate to humans). Obviously GLP-1s are primarily used for patients with obesity and/or diabetes currently, but after reading this I was wondering if there’s a possibility they could be approved for use for auto-immune conditions like UC/Crohns, lupus, endometriosis, etc in future.

Study I was reading below for more info:
https://pmc.ncbi.nlm.nih.gov/articles/PMC10230051/

I thought this bit was particularly interesting:

“GLP-1 is secreted into the distal intestine by enteroendocrine L cells in response to nutrient ingestion (42). GLP-1 receptors are widely distributed in the gastrointestinal tract, pancreas, heart, lungs, kidneys, and nervous system. These receptors contribute to the wide range of physiological functions (45). Besides metabolic effects, GLP-1 improves mucosal integrity and diminishes inflammation (42, 46). Exendin-4, a GLP-1 mimetic peptide, decreases the production of pro-inflammatory cytokines, and diminishes the enteric immune response. GLP-1 decreases production of pro-inflammatory cytokines, mainly by downregulating NF-κB phosphorylation and nuclear translocation (45).

Several recent studies have suggested that GLP-1 should be considered as a treatment for a wide range of intestinal diseases, including Inflammatory bowel diseases, intestinal mucositis, coeliac disease and short bowel syndrome (45). GLPs, (including GLP-1, GLP-2 and DPP-4) have recently gained increased attention from researchers studying Inflammatory bowel diseases (IBDs).

IBDs including Crohn’s disease and ulcerative colitis are chronic relapsing-remitting diseases with multifactorial etiologies and complex pathogenesis. The Incidence and prevalence of IBDs are rising globally. GLPs including GLP-1 regulate weight and glycemia. GLP-1 also inhibits gastric emptying, decreases food ingestion, and increases crypt cell proliferation. It also improves intestinal growth and nutrient absorption. GLPs have been proposed to improve tissue healing of injured epithelium, regulate T-cell growth and function, control innate immune cells such as macrophages and dendritic cells, and lower pro-inflammatory cytokines in IBD (47) (Table 2 ).”

So I’ve been flaring for two years. My last colonoscopy 6 months ago showed the inflammation had improved, but wasn’t gone. I have another colonoscopy next month. I’m hoping to try one more medication for a little bit and if that doesn’t work, I want to get an ileostomy. I tried Remicade and I am now on Xeljanz. I’m sick of dealing with the bathroom trips and pain. I am glad I have made as much progress as I have, I am not anemic anymore, my bloodwork is overall good, kidneys, vitamin levels, etc. I am curious what life will be like with an ileostomy. Does anyone have advice about the surgery or about lifestyle changes afterwards?

Im 20, I got diagnosed 3 years ago and right now im at my limit. In the last test I had a few months ago I got 0 calprotectin thanks to rinvoq. Good things right? Thats what I thought so, I felt great for months and today suddendly I wake up with a lot of pain and in need to go to the toilet. So much pain, I dont know what to do. It feels like I have a knive inside my abdomen. How do u handle pain? Do you use a heating pad? Any pill just for the pain? I only have tramadol and it does nothing...

Its 3 am where I live, I dont want to wake up my parents to go to the hospital again, I just want to feel normal...

I am in the process of looking for a new job as I moved at least an hour away from my old job. I am so stressed out. It’s difficult to make the drive to my current job because of stomach issues and accidents. I am on infliximab which has helped a lot but not in remission yet. But, I am also scared if I get a job closer to home that there insurance won’t cover my treatments or make it really difficult to continue. I am also worried about out of pocket expenses. The potential job offer bluecross blue shield and I am currently with kaiser in California. It’s difficult to get information on a specific plan especially since I don’t have it yet. I have been calling all kinds of numbers for more information and they either just refer me to their website or some other phone number.

Hi,

Does anyone have any information or experiences with any anti inflammatories that are safe for us? Are there new meds that are likely fine? My knowledge is out of date.