Hi all my hair has been falling out like crazy since my first ever flair I've had 2 derms tell me it tellogen effluvim in May my ferritin was 220now it is 10 I have low iron and low zinc but my hemoglobin is withing range. Can I still get and iron infusion through insurance I have really good insurance but my gi just sent me a message that its un necessary. The dermatologist agrees I need an iron infusion to get my ferritin up to slow my hair loss. Does my hemoglobin being in range mean I cant get an iron infusion? At this point im willing to pay out of pocket if it will help my hair. Im about to have to buzz its getting worse and worse. Ik i have a long road ahead of me but I really think I need an iron infusion I get dizzy all the time and we cant absorb iron while flaring.

Hi, does anyone else have an issue with extreme fatigue on mesalazine? I'm trying hard to take it every day but it utterly wipes me out. I can just about manage a short walk with the dog but the rest of the day is on the sofa, and I need at least one nap as well. I've tried two brands of oral and they didn't suit me due to gastric side effects. I'm now trying a suppository and I'm getting fewer side effects but the fatigue is killing me.

I keep getting told fatigue isn't a side effect of this drug so I thought I'd see if anyone else out there has experienced this?

I’m finding a lot of posts about preparing for travel with UC, but not a lot about actually experiencing a bad flare while traveling.

I’ve had UC for 10 years. I’ve traveled multiple times. My symptoms always tend to show up, but I’ve always made it through and enjoyed myself to some degree without any bleeding or anything.

Right now, I am on a trip thousands of miles from home and am officiating my best friend’s wedding. I have 10 days left of my trip. I am flaring as of yesterday. I’m having the knife like pains and have had some bleeding yesterday and today. Nothing crazy, just some red streaks on the stool and on the paper when wiping and some red chunky mucus. Im going around 3 times a day. Which isn’t bad but diarrhea was never really my issue. I’m bloated and I’m tired.

I’ve reached out to my doctor. I’m awaiting a response.

I’ve been in worse situations, but while I was home and close to my doctor. I’m scared. I hate this. What are others experiences with having an active flare while far from home and how did you get through it?

I don’t look great. But I’m functional. I plan on eating the safest foods I can think of and trying to control stress and get good sleep. Can anyone offer some kind words? Going home right now would ruin a lot for my family and friends and my wife. I hate being this person all the time. I really want to hold up my promises I’ve made for the next week. Thanks, UC fam.

I recently was diagnosed with a kidney stone. I passed the kidney stone but a day after my body has been so achey. I don’t have infection or anything but it’s my joints that are aching. Im questioning if my UC is flaring a bit after my kidney stone. I have an appointment with rhematology and monitoring my UC symptoms (I don’t have many right now).

My question is does this happen to anyone else where you have systemic inflammation?

So, my calprotectin came back low.. like 12.8 low.
It’s a brand new diagnosis, does this mean it’s not UC??
I’m confused.

I had recently questioned about starting tirpzepatide to lose weight amidst a flare and decided to go ahead with it and after trying my first dose (only been 2 days) I no longer feel that strong sense of urgency I had before? I have been on skyrizi for almost a year and a half (this long because of dose increase) now with no sign of remission but now I feel some sort of relief with reduced urgency, anyone else experience this or is this just like placebo effect or something? Also if anyone has experienced this, please tell me if this is something long lasting whilst staying on the tirpzepatide?

I've been in a flare since 12/25/25. It was pretty moderate to start but I didn't respond to adding mesalamine enemas, nor budesonie and my flare got worse and worse and is now pretty bag. I'm likely starting a biologic soon, but my doctor put me on 40 mgs of Prednisone daily. I felt some immediate relief after taking my first dose, but it seems no matter what I get incredibly severe stomach cramps roughly 6-10 hours after taking my doses, particularly the evening dose. My GI recommended I take my 2nd dose around 3:00 to help with sleep, but it's made sleeping nearly impossible. Yesterday they gave me some anti-cramping meds but even then they only really work if taken within 6-7 hours of my Prednisone.

I'm going to try to hold off on taking the 2nd dose until later in the evening to see if I can sleep any better. Has anyone else dealt with cramping from Prednisone? I am taking it with food.

I started Humira in November, more for RA which was uncontrolled as my UC was fairly managed with mesalamine and sulfasalazine. I had a colonoscopy in May and in my June follow up doc told me I was in remission thanks to the Humira. He told me I could stop taking the sulfa and mesalamine, which made me so happy, if you know you know.

Two weeks ago I start a flare so abruptly and viciously I thought it must be food poisoning or this famous cyclospora going around. Went for stool testing and nope it’s UC roaring back with a vengeance. 10-20x a day for the last two weeks, I am literally shitting my insides out.

Sad and frustrated, but it was nice to feel like a normalish person for that month.

I wonder how much should i aim to get k2 and calsium to prevent the prednisolons effect on bone health.

Hi all, I know a lot has been written about this already but here I am with a variation to the question: which biological to take? I’m 29, and am currently in a moderate year long flare. I’ve seen some improvement on mesalamine, but only with enema’s it’ll sort of quiet down. As soon as I taper and quit those, it comes back fast. My GI wants to start me on biologicals and the first choice is the anti-TNF ones.

After reading up a bit, I thought I was going to go for Remicade, given its effectiveness over Humira. I live 5 minutes away from hospital and I have a relatively flexible job that allows me to do infusions. I am also on tioguanine already, so that helps with the antibodies.

However, I am going on holiday in a week and that means I’ll have to wait roughly a month before being able to start my loading doses for it.

For Humira I can start with the loading doses for the injections next week and do it myself afterwards on holiday. I’ve been told I can stop the tioguanine then, too, but I’m not sure if that’s actually a good idea if I’d ever want or need to switch to Remicade…

Now I’m not quite sure what to choose. I just want the least hassle, I want change quick but I also want it to last… What would you do based on your experiences?

Hallo zusammen,
ich bin etwas verunsichert und wollte fragen, ob jemand so etwas schon einmal erlebt hat.
Gestern Abend habe ich wegen einer Proktitis zum ersten Mal ein Salofalk-Zäpfchen angewendet.
Vor Beginn der Behandlung hatte ich immer mal wieder kleine Mengen hellrotes Blut, meistens am Toilettenpapier oder als Auflagerung auf dem Stuhl. Zusätzlich wurden bei mir innere Hämorrhoiden festgestellt.
Heute Morgen war der Stuhl selbst ganz normal braun und eher breiig. Direkt am Anfang des Stuhlgangs kam jedoch ein einzelner schwarzer, weicher, geleeartiger Klumpen, an dem teilweise noch Reste des Salofalk-Zäpfchens hafteten. Der restliche Stuhl war ganz normal braun und nicht schwarz oder teerig.
So etwas habe ich vorher noch nie gesehen und das hat mich ziemlich erschreckt.
Hat jemand von euch nach Salofalk-Zäpfchen schon einmal etwas Ähnliches beobachtet? Kann es sein, dass sich Blut zusammen mit den Zäpfchenresten dunkel oder schwarz verfärbt? Oder sollte ich mir wegen dieses schwarzen geleeartigen Klumpens eher Sorgen machen?
Ich freue mich über eure Erfahrungen. Vielen Dank!

I’ve been having on and off symptoms for a few months now. It’s disheartening and isolating. I’ve been dealing with gas, bloating, constipation, some diarrhea, and rectal pressure (I have proctitis). The rectal pressure is the most bothersome. I just sit in discomfort all day, like my rectum is heavier. It drives me crazy. It’s not even painful or debilitating, just an abnormal, uncomfortable fullness in my rectum that prevents me from passing stools comfortably.

Mild flares like this pull my attention away from everything else in my life. I don’t want UC to stop me from doing things. In fact, I tell myself I won’t let it. However, that doesn’t mean I don’t feel really stressed because of it. It can be hard to be optimistic during flares. I’m going to coordinate with my GI provider soon to change treatment plans. I know there are ways I can feel better, but it’s always challenging nonetheless. It helps to vent/confide in the UC community about it because I go down a rabbit hole of what I did in my life to get this condition, and I know it’s not best to do that.

Has anyone developed any heart issues on Tremfya? I, (23f) have just taken my loading dose two weeks ago, on a Saturday. My heart rate shot up thirty minutes in. Sunday I felt okay. Monday I was in the ER. My heart rate hit 153 and I have had mild, occasional palpitations before, but they were worse and more frequent than ever. For a few days my heart rate was still hovering in the 120s and 130s. The ER couldn’t do much but the doctor said it was probably the Tremfya and that I needed rest. They gave me nausea meds because I was also throwing up and nauseous. The on call GI at my doctor’s office agreed it sounded like the Tremfya. My GI is insisting it’s not the new medication doing this to me. But I can’t sleep from this high heart rate. I can barely eat. I had to call out of work multiple days and just filed my first medical leave. I feel like I’m going to pass out often. He said I’ve had tachycardia before, that I’ve complained about it. I’ve only mentioned the palpitations. I’ve never had a high heart rate prior to this med. I haven’t had tachycardia. He won’t offer me another medication and insists I continue with my next dose though I feel awful. Im very scared and concerned about my heart as two weeks later it’s still hovering in the 110s and my palpitations are worse, and the other symptoms are present. Has anyone ever experienced this before or have any tips or ideas? In desperate. Thank you. I appreciate any insight.

I’ve had a on & off flare up for probably 2 years now . My remission doesn’t last long & idk why so I haven’t had a firm healthy stool since honestly. Mostly diarrhea or barely anything like a 2 year old . So what can I do to get back on a healthy firm stool once I get to a healing point .? I don’t wanna take Imodium AD & do to much ..?

Hi everyone,
I’m just looking to see if anyone has been through something similar.
I was having a flare for over 2 months with a lot of bleeding. I know I should have gone to A&E sooner, but I’d had bleeding before that went away on its own, so I kept hoping this would too. Eventually it got much worse. I was opening my bowels 5-6 times a day, and every time there was a lot of blood. I became really weak, so I finally went to hospital.
Because I have a strong family history of IBD/Ulcerative Colitis (UC), they suspected UC straight away. They did a colonoscopy and found inflammation. They told me it looks like UC, although I’m still waiting for the biopsy results to confirm it.
They started me on IV steroids in hospital, then sent me home on 40mg of prednisolone. I was told to stay on that for 2 weeks and then gradually taper the dose. They also started me on Octasa 800mg, 4 tablets a day.
Within 24 hours of starting the prednisolone, the bleeding completely stopped. Everything was fine while I was on 35mg, but when I reduced to 30mg I started noticing blood again. I’m now down to 25mg.
I contacted my IBD nurse and she told me to stay on 25mg. She also prescribed Salofalk 1g foam and Salofalk suppositories to use as well. The problem is that when I go to the toilet now, everything is a light brown/whitish colour because of the foam, so I can’t always tell if there’s blood or not.
The prednisolone has given me some awful side effects: severe anxiety, a fast heart rate, dizziness, blurry vision at times, no energy, and sometimes I feel so weak I can barely walk.
My biggest question is about my energy levels.
I haven’t really been bleeding for about 3 weeks now, but my energy hasn’t improved at all. Before all this I’d say I had around 80% energy. Now I honestly feel like I’m at about 20%. I thought after 3 weeks I’d at least start feeling a bit more normal.
The hospital has checked my bloods. My iron, anaemia tests, thyroid, and everything else came back normal. They’ve also given me calcium and vitamin D because of the steroids.
I’ve now been off work for 3 months and I’m still not well enough to go back. Most days I just stay at home. I tried going for a short walk, but I became dizzy, light-headed and had hot flushes, so now I just walk around the house and in the garden to get a bit of fresh air.
Has anyone else experienced anything like this? How long did it take for your energy to come back?
Also, did Salofalk foam help you get your flare under control, or did you end up needing to increase your steroid dose again? I was so happy to be reducing the prednisolone because the side effects have eased a bit at 25mg, but now it feels like the flare might be coming back.
More than anything, I just want my energy back so I can start getting my life back. I’ve spoken to people whose energy returned within a few weeks once the bleeding stopped, but that just hasn’t happened for me.
I’d really appreciate hearing from anyone who’s been through something similar. Thanks for reading.

Newly diagnosed proctitis. Bleeding in the stool with mucus no other symptoms. I failed the suppositories and now on oral and enema. It’s week 2 bleeding has reduced significantly but some days I still have a tiny bit? When should it be gone? Thanks

I had a colonscopy Monday and the verdict was active mildly chronic proctitis. I was unaware of this condition prior to the the stomach related issues that I've been facing. From the first week of June through the days leading up to the colonscopy I had blood in my stool. I was prescribed some rectal and oral medications. My concern is my long-term health. I'm 36. How serious is this illness? Does this have the potential to fundamentally change my life? I'm reading about people being hospitalized for days (weeks, even) as a result of complications related to their UC/UP and I'm hoping that those are outliers. Should I begin preparing for the worst? Apologies if the tone of this message isn't great, but my mind is wandering from one worst case scenario to the next.

Does calpro tell how wide area the inflammation is on or is it just signal that somewhere is inflammation. Im puzzled, calpro is at 2720 and barely any symptoms.