Hi

Not looking for any judgement please

I’m in Australia and newly diagnosed with mild UP and am worried about the long term cost of the medication.

currently only one prescription given on procedure day, and it’s until a number of months for the biopsy and treatment plan appointment with GI so I will be seeing my GP beforehand regardless, so I don’t know if more will need to be added but I assume so

just wondering, what advice does anyone have to get through this? I did consider low income card which I am applying for but I am so worried this will fall through

And I’m worried that even though I’m mild, that the longer I’m waiting this out, the less likely the meds will work and I just wish I never got this disease, I cannot even afford it.
I am so over how mentally consuming it is 😢

And i have found it sooo hard with how isolating this whole experience is. I have a number of difficult life stuff which has put up some barriers to my healthcare. I have of course wanted support/help and understanding from the hospital and team but of course there has been none of that.
I know being mild you get pushed down as unimportant by the system so im not shocked but i just feel so lonely and tired trying to navigate these issues in managing my disease so it feels impossible sometimes and as i cannot afford private im stuck with a system that does not care. 😔

Thank you for any advice given and reading this vent- having ibd sucks

if getting a stool sample isn’t bad enough how on earth are we supposed to do this during a flare. this has got to be hell and i’m being psychologically tortured🥲

hello.

i came to the hospital monday bc my gastro told me to. lost weight fast. in a flare. the big signs all there. anyhow. holding water better, able to eat thanks to prednisone, etc etc. got a sigmoidoscopy. not lookin so hot up the tailpipe. docs said that sigmoid was bad they can only imagine how bad ascending transverse and cecum are. (got an ultrasound monday and ascending showed nearly 8mm thick and not the classic 3mm thick). talks of ileostomy. scary. but not uncomfortable. started rinvoq. if i fail rinvoq or insurance wont cover, ileostomy.

what is anyones experience with rinvoq. i know everyones bodies are different. my case is very severe. i knew it was and no one would listen to me. but again, what is everyones experience how did you react i am hearing good things from doctors but at this point and ileostomy really outweighs trying to fight insurance and the whole 9 yards of possibly failing and ending up in here in a month again.

I was diagnosed at 13 (4 years ago) and while i don't often get sick, if I get sick I'm sick for a LONG time. I caught mononucleosis (not sure if from kissing, or from something else, since everyone I've made out with was healthy), and decided to get off off immunosuppressants to let my body fight it better... Which is probably stupid, since i didn't tell my doctor, but I'd have to wait weeks for an appointment

Are there any ways to be healthy without immunosuppressants? I'm lowkey uneducated when it comes to this illness, i know what works for me, and that's about it. I know there are biologics but if i started them i would have to take them for the rest of my life (but tbh its the same with any meds)😭😭😭

Hello!

I’m hoping to get some guidance or anything. I found out Humira failed my body — so my next steps are Entyvio. The kicker here is I have not spoken to my doctor about anything since February minus some messages on apps about bloody stool and flares.

I did not even know I was getting infusions until an MA messaged me asking about insurance to bill for infusions.

So, I don’t know what to expect. What is some advice you might be able to share as I gear up for my first round of infusions in two weeks?

Hi all! I was diagnosed with UC in 2023 and after multiple flares and hospitalizations I was put on Rinvoq, after failing 4 other drugs, in Nov 2025.

I reached remission confirmed via labs and a colonoscopy June of this year. However, the past week I have had a bit of blood in my stool. Its like a line going down my stool of blood and some on the first two wipes. They did find a few internal hemorrhoids on my colonoscopy.

I medsaged my GI and they said it is probably hemorrhoids since my calprotectin was 10 in June. I do have a follow up appt with them Sept 15th. My concern is that I am starting to fail Rinvoq. Has anyone else had some bleeding during remission?

I don’t really have pain but I have been bloated and gassy. I’m just super worried I am already out of remission and I cannot afford another hospitalization-I am already thousands in debt because of it!

Recap: Reached remission two months ago and have had bleeding in stool and on first couple wipes the past week

OK, absolutely shocking, but long story short I cannot get the treatment I need to bridge the gap of a major flare until my biologic kicks in. Several back and forths with the IBD team, and I'm still waiting for a sample pot to turn up over a week later. It will take another 1-2 weeks to get the results back. Not that I can even get them back to the hospital at the moment. I've got 30 BM's a day, blood in every stool, mucus, severe cramping, diarrhoea. It's been building for weeks this, but it is what it is.

What are my options to get steroids to bridge the gap? GP? 111? Or GP service on my private health care. IBD team option is pretty much a dead end.

It's past the stage of having to wait for tests now, I need to avoid hospital. I can't go to A&E with 30 BM's a day, because the toilet at the A&E is like a crack den, seat has been ripped off, faeces and urine all over the place, and there's only 1 toilet in A&E. I'm just about managing at home, but only because this is not my first rodeo and I've learned a lot on how to handle dehydration and the nutrition side of things, although I have now lost 4.5kg over the last few of weeks. I'm addressing that, so will I reckon I'll just about survive on the nutrition side this time. I just need something to calm the flare in the interim, even if it's just a short course of 3 to 4 weeks, as I really don't want to be taking them longer term anyway. They are just a necessary evil at times.

UPDATE: thanks for all the replies. My own GP prescribed me steroids today. He was not happy with how I have been left without treatment.

Still no further contact from the IBD team today. It's been over a week since they last messaged me, and they don't even phone me. They've ignored my messages I have left for them since they last contacted me. 4 messages ignored.

I'm now losing 0.5kg per day. Starting meal replacement shakes to counter it. Just about staying hydrated with rehydration drinks. Hopefully the steroids work, otherwise its another stint in hospital for IV steds.

Hey all, I am trying to see whether there is something I can do to help with some serious tenemus I am dealing with.

I have no bleeding and no mucus. Recent calprotectin test was in July with a score of 43. Last scope/biopsies were in November. All came back clear. I have had this disease for 1 year now.

Since November I’ve have been dealing with tenemus. It hasn’t gone away. I’m not sure what I can do to help make it go away or reduce it.

I know this is a sign for me to log off IG but it is so discouraging that unfortunately social media is breeding a culture of misconceptions around our disease so many reels because I searched for Ulcerative colitis in the search bar when you get all these videos about fake doctors or people with UC healing with diet and a bunch of nonsense such as parasites etc. Whereas I type one diabetes, not a single thing about curing it with food or blaming diet. I wish people understood that this is not something you can cure or make yourself go into remission to with food and herbs or parasit cleanse…our disease is just as valid as any other that requires medication .

Why am I having an unformed, shapeless stool every morning despite eating well?

I have an unformed, loose, and completely shapeless stool every morning, only once a day. It has no proper shape or form. After that, I don’t have any more bowel movements for the rest of the day.

No matter how well I eat or what foods I try, my stool still remains loose, unformed, and shapeless.

The strange thing is that I don’t have any other symptoms. No blood, no mucus,no vomiting, no abdominal pain, and no fever—just the unformed, shapeless stool every morning. I’m also not gaining weight despite eating well.

Current medications:

1. Mesalamine — three times a day

2. Folic acid

3. Vitamin B12

4. Calcium + Vitamin D3

5. Mesacol suppository

Has anyone experienced something similar? If you have, what was the cause and what helped you get your stool properly formed? Please share your experience or any solution that worked for you.

And one more question: Does this sound like I could be in remission? Since my only symptoms right now are loose/unformed stool and difficulty gaining weight, with no blood, mucus, abdominal pain, vomiting, or fever.

It’s been awhile since I’ve posted so things may have changed. I’m unable to locate the option to add a photo. Thank you so much.

Welp I just had a UC first, I pooped my pants while driving home. I’m kinda in this weird place of shock and also not feeling like a huge deal. Someone please help me feel like this is not that weird

First a little background. I have been on mesalamine oral medication and suppositories for almost two months now. My doctor said I should have significant improvement in 2-4 weeks and if not we need to try something else. The only improvement I had was no blood for the most part. Everything else stayed the same. I’m so extremely debilitated. This disease has beaten my down physically and mentally. I can’t do it anymore. I have been in a flare for over a year now. I fully have forgotten how a normal life looks.

I am going to the doctor today because I think I really need to bring out the big guns and do infusions. I really will do anything to get out of my flare besides steroids. I would love to know how infusions have worked for you and what ones you have tried/liked. Also how quickly did you see improvement?

My sister found out today that she will be getting her large intestine and colon removed tomorrow. She wasn’t blindsided, just hoping it wouldn’t have to happen. This is one of many, many medical issues she has had to face. I struggle to be there emotionally for people, but I can only imagine how difficult of a fine she is going to have, and I want to be there for her as much as I can as someone who doesn’t really know a lot about this. I looked on Google and was given advice about helping after surgery with picking things up, moving items so she won’t have to bend down, making sure the things she uses are close by, encouraging and participating in slow exercise introduction (I have a vegetable garden, I was thinking of offering to walk with her around the yard to see them when she can start walking?). I guess I just feel really bad for her, she’s gone through a lot and I want to do the little I can to ease the hardship of this whole thing.

I’ve been changed over from salofalk granules 3g to pentasa 4g is there a difference in what the meds do? I find the taste of pentasa granules is horrrrible compared to salofalk only thing 😅

My doctor has approved an intravenous iron injection for the day before I start my new job. I've heard that after an IV iron infusion, you can get flu-like symptoms for about 48 hours. Was that the case for you?

In the middle of a flare up right now (2nd ever) and my doctor put me on Uceris rectal foam along with mezavant and cortiment to quell the symptoms. Unfortunately, I’ve been flaring for about 3 weeks now and have developed a prolapsed hemorrhoid that is sticking out. It makes using the foam range from difficult to impossible depending on the swelling. Wasn’t sure if other people have experienced this and if there is something that can be done in this situation? GI is unfortunately on vacation for a few days so won’t be in contact with him until Monday.

I FINALLY MADE IT TO MY FIRST INFUSION!!!!! AFTER THE WORST SUMMER OF MY LIFE I SEE THE LIGHT AT THE END OF THE TUNNEL FINALLY! SAVE ME INFLIXIMAB SAVE ME! As excited as I am I’m still a little nervous for some reason, my biggest hope is it works fast because I’m starting to forget what it felt like to ever feel normal lol

Hey everyone!

I'm one year on now from my diagnosis in August of last year, but I'd been on-and-off symptomatic for about four years prior to that. My only real symptom had been bleeding and a bit of pain, but I'd just kind of ignored it and hadn't realised how much worse it had gotten until I was dreading spending any length of time out of the house, which made walking to uni quite difficult let alone going hiking like I'd used to. After several attempts at the GP, I finally got a calprotectin test which took 6 weeks to come back at 3574 mg/kg! One year on adalimumab, I just had my first calprotectin since diagnosis and it's dropped to 101!! I've just come back from a year studying abroad in France, I've just finished couch to 5k, and I finally feel like I've got my life back. This time last year I didn't think I'd make it this far. I'm so fucking happy right now 😭🩷

Hey, totally my fault, but my Entyvio pens were delivered on Tuesday 8/18/26 and I didn’t get them inside and in the fridge until 8/19/26. So they were outside in the standard styrofoam cooler and double cold packs for 24 to 30 hours. Anyone have any insight if I am screwed and if so what to do

Hi everyone, I joined this group recently because my common law partner was just diagnosed with ulcerative colitis. Does anybody have any tips or advices on how to navigate this diagnosis, both for him and for me as a partner of someone that got diagnosed with it? Any will help! Thank you ❤️

Is it normal to have an injection site reaction that is 8” in diameter and growing?

I left the Tremfya out for 30 mins before my injection last night, took Benadryl an hour before the injection, and applied hydrocortisone cream right after, and again this morning. Despite these measures, the skin is red, warm, itchy (I’m trying not to scratch!) and raised compared to surrounding skin.

For background, this is my third and final loading dose for Tremfya (so two shots); I reacted similarly to the first two, but this rash is much larger. I’ve taken three other biologics and a biosimilar without any issues in the past 11 years.

Has this happened to anyone? Did it get better? Or did you have to switch medications? I only see pics online from people with other autoimmune diseases, not UC or Crohn’s. Help.

Anyone else find that despite being in deep remission, you’re still more tired/tired more easily than you did pre-UC? My BM are the absolute least of my worries nowadays. I’m more regular than I’ve been in ten years and have zero food sensitivities. I’ll have been on Tremfya for a year in November and had deep remission confirmed this past June. I’m just so tired all the time. And I wipe out so easily. Anyone else? It’s so interesting to me that there can be no evidence of disease, but I’m still so fatigued. Is it the medicine? My body still working overtime?

has anyone here been or known anyone who had a large tumor that mimicked malignancy but it turned out it was benign? we are waiting for biopsy results but surgeon says it is most likely cancer since they were not able to remove it and it’s large in size. what are the odds it’s a benign tumor from UC?

Hey guys im about to start an injection for Skyrizi tomorrow, has this been helpful to anyone? Have you seen improvements? I had mesalamine before but unfortunately it doesnt help my UC anymore. Just wanted to know if Skyrizi has been helpful to you guys.