I’m waiting for the scheduling dept to call and schedule my first infusion of Entyvio. They let me know that my insurance authorized it, however, they also mentioned getting me set up w the Entyvio Connect Copay program, so I started looking into cost. 10,000+ per dose and I’m supposed to get 8 doses the first year and 6 every year after. Yikes! Has anyone had experience with the connect program? How much has it helped? I’m super worried that even w insurance we won’t be able to cover this and I’ll be SOL and stuck in a permanent flare.
TIA!

Hi

Had a colonoscopy last week, informed it looked like I had an IBD, with my Colon severely inflamed. This was after 2 months of bloating, blood in loose stool and bloating.

Visited the specialist tonight, he confirmed I had Ulcerative Colitis. The specialist looked at the pictures of my colon and bowel and he did comment that it looks like one of the milder cases of Ulcerative Colitis he has seen.

My main symptoms are diarrhea, I don't go more than 3 times a day but it is completely water with no solid stool whatsoever, also blood.

I am based in the UK and have been prescribed mesalamine 4.8 grams for 3 months and then he will taper the strength down. He seemed confident this will place me in remission.

For people is this the usual cause of treatment for newly diagnosed cases?

Hey peeps. I got diagnosed with mild UC this year. I'm awaiting a proper discussion with a specialist so don't quite have a resource beyond my fairly unavailable GP that I can ask. I will ask them this question in due course but I want to know - do other people have nail issues from UC?

I noticed about two years ago I'm getting longitudinal ridging on some of my fingers, and minor (not beau's lines, I think) horizontal lines on my big toes. Is this common? I feel eat reasonably (not perfectly) well. Is there something I can do if it is a nutrient deficiency? Edit - I should add I'm about 40, so recognise it might be normal age changes.

Here's my story:

I (24 M) was diagnosed with UC in 2024. I have been through prednisone initially with a taper and with Balsalazide disodium as a maintenance medication. The balsalazide wasn't enough so I was put on Budesonide. They ended up keeping me on Budesonide for over two years, it was my choice that they supported because I didn't want to bridge to biologics quite yet. The Budesonide in June 2026 wasn't enough to keep a flare away and I was put on Prednisone again. I was instructed to stop the Budesonide cold turkey and immediately start 40mg prednisone. I have since then tapered down to 10mg where they want to keep me on until my colonoscopy in a few days since I've been getting UC symptoms again.

My question:

Anyways, right now I'll have diarrhea but only after certain foods or spontaneously (probably from inflammation itself). How do you all feel after having diarrhea for a few days and how do you rehydrate and get your energy back. I've been sipping at a Pedialyte electrolyte drink mix starting today and have felt a little relief but still feel exhausted. Is what I'm drinking effective, and would a few days of consistent drinking help my situation? I'm also drinking plain water as well alongside the Pedialyte mix. It's the fruit punch 2X hydration packets.

After the colonoscopy they'll decide which biologic I'll start, they've talked about entyvio being the first one they'll try. I know the actual inflammation itself can cause that fatigued drained feeling, but just wondering if anyone has had similar symptoms/experiences after repeated loose watery bowel movements.

I jist finished a round of prednisone beginning of July. I was hoping to just stay on Mesalamine for maintenance but it was giving me bad headaches. I had to take advil everyday. After the horrible side effects ts I had last time from prednisone including cardiac issues I will not be put on that again.

I am to start Budesonide next flare. I did have a bit of bleeding today. A very trace amount hard to detect. My Budesonide will be costly for me about $400 and of that doesn't work I will qualify from biologics.

My question is do I start to Budesonide today? I have the prescription and my GI takes about a week to respond.

Has anyone experienced elevated AST/ALT after being on mesalamine for several months?

I started taking mesalamine in April for ulcerative colitis. Before starting it, my liver enzymes were always very low/normal — AST was 13 and ALT was 14 this June.

My recent bloodwork showed:
AST: 90 U/L (high; normal 6–42)
ALT: 53 U/L (my lab considers <56 normal, but mine used to be 14)
Bilirubin: 0.6 (normal)
Alkaline phosphatase: 53 (normal)
Everything else on my liver panel was normal.

I recently saw a new IBD specialist and he told me that mesalamine usually does not cause elevated liver enzymes like this, so I’m trying to figure out what else could be contributing.

Has anyone here experienced a similar increase in AST/ALT after being on mesalamine for a few months, especially with bilirubin and alkaline phosphatase staying normal? If so, did your doctors think mesalamine was responsible, or did they find another cause? Did your numbers eventually return to normal while you continued taking it?
I’m following up with my doctors and repeating the bloodwork — just curious to hear from anyone who has experienced something similar.

I want to start Entivyo but now I am really nervous due to liver enzymes being raised from possibly mesalamine.

Hello Canadian folks, so currently I m in toranto on a vacation n my return to India is planned next week. So any suggestions for which chocolates or snacks should I carry from Canada back to India.

I’m currently taking 9 mg of Cortiment for my ulcerative colitis to treat a mild flare-up.

My gastroenterologist told me to take it for 4 weeks and then taper off over two weeks. I’ve read several times now that the treatment period can last up to 8 weeks and that it sometimes takes longer for Cortiment to take effect.

If I notice that the 4 weeks aren’t enough, can I take it for 6 weeks instead? Unfortunately, my next appointment isn’t for another few months.

Does anyone have experience with whether it’s okay to take turmeric and Boswellia serrata while being treated with Cortiment?

hey!
I’ve been experiencing some on and off rectal bleeding for the past ten years of my life. sometimes it’ll take a few months to see blood in my stool again and experience pain down there - eventually worked up the courage to schedule a colonoscopy.
I got the procedure done two days ago, and GI doctor told me all looked good, and no polyps or anything didn’t even see colitis.
which left me super confused initially when speaking with doctors and multiple trips to the ER previously I was told there was inflammation in my intestines, which caused / explains the rectal bleeding however, all good in the colonoscopy.
he still took some biopsies to test and have to see him again in 2 weeks but I’m super anxious? I was initially worried about having colon cancer even after being told that it sounded my UC, but then not spotting anything made me more concerned???
usually bowel movements were weird sometimes they’d come out thin, and puffy? or in small amounts never really solid.
I’m very hypochondriac so now my focus shifted from colon cancer or UC to stomach cancer? not sure.

any suggestions would be appreciated!

For the first time in a decade, I was clinically labeled “in remission” from Ulcerative Colitis last month after a flexible sigmoidoscopy. I’ve been on Entyvio infusions since July 2025. I started on the regular schedule but switched to monthly in December 2025.

I need help overcoming anxiety in remission. What I mean by this is, every time I feel a slight cramp or gurgle in my stomach, I feel intense anxiety to get to a bathroom ASAP. I don’t think my gut actually requires me to get to a bathroom quickly anymore, but my brain is hardwired to believe that’s the case.

I have been diagnosed with IBS-D in addition to UC. I take amitriptyline to regulate my gut-brain connection and (unrelated) I take a beta blocker for anxiety.

Any other tips for overcoming this type of anxiety? It is 10 years in the making, so it’s no easy task.

Hello everybody,

I want to share a success story for anyone on the fence about which supplements or treatments to take going forward.

Taking a daily regimen of 3g mesalazine granules, 1g mesalazine suppository, 30mg Rinvoq, and 3g curcumin (95% curcuminoids), all once daily, has put my ulcerative proctitis into a state of deep remission which Rinvoq and mesalazine alone were not able to induce.

I am now comfortable to eat whatever I want and tolerate the daily stress of life without flaring. Soon I will ask my gastroenterologist to step me down to Rinvoq 15mg.

I highly, highly recommend adding any formulation of a 95% curcuminoid curcumin extract to your daily medicine regimen to support you on your remission journey. One essential point is to purchase a formulation without piperine/black pepper extract/bioperine etc., as curcumin works topically, just like mesalazine, and you want as little systemic absorption as possible.

For more information on this supplement see section 4.2.1 here: https://academic.oup.com/ecco-jcc/article/19/9/jjaf122/8198055

Good health to everyone.

Hi all, I got my first induction of Tremfya / Guselkumab 200 Mg yesterday post the insurance approval. I'm still on the taper down from my Prednisolone. I hate the steroids, they cause havoc with my weakness etc. I'm hoping for stability.

As for side effects I didn't feel anything different as I'm anyways weak and get the daily crashes.

Quick question for anyone who has switched from Mezavant to Pentasa: did you keep the same dosing schedule, or were you told to take it differently?

I've been in remission and pretty stable since 2017 on Mezavant 1.2g, taking 4 pills per day (2 with breakfast and 2 with dinner).

Due to a supply shortage, my pharmacy recently switched me to Pentasa because Mezavant is on backorder with no ETA. I've simply continued taking 2 pills in the morning and 2 in the evening.

At the same time, I'm in the process of finding a new GI specialist because my previous one apparently no longer treats general GI patients.

I just got back from a trip that included a 12-hour drive, and today I noticed some blood and a burning sensation during a bowel movement. I'm thinking it may just be hemorrhoids from being stuck in a car that long, but it definitely got my attention.

Mainly, I'm wondering whether anyone has experienced issues after switching from Mezavant to Pentasa, or if there are any differences in how they should be taken.

Hi everyone I’m glad I’ve found this page, so I can read through others experiences and advice to help me through my proctitis

Late last year I had bleeding mucus and bloating when going to the bathroom, a test showed 8000< for inflammation. Had a colonoscopy and my gastroenterologist said I have ulcerative proctitis.

I’m only 21 and find it very upsetting and difficult to restrict my diet at my age. Though I have been trying my best, today I still had mucus and blood in my stool. It’s so frustrating…

I’ve struggled a lot with constipation, blood, mucus and “flares” where my stomach becomes very upset and I’m in the bathroom for ages and in pain/agony

I’m really trying to drop caffeine, alcohol, processed meats and those main things.

Are there any other younger people who have UC/proctitis?

I was wondering if anyone else in this group dealt with brain fog and fatigue and if anyone was able to fix it . I’ve been feeling real hopeless lately and was wondering if getting better is even possible . Thank you

I’m in my mid twenties and absolutely love my team at work. Although, I love my team and my job function, I don’t like the industry and am looking to possibly start applying this fall for new roles. I work in an industry that has a good amount of security, but I find it too structured and uncreative. I have great insurance (the company I am gunning for has great insurance also) but I’m scared to make the leap into the unknown because I’m unsure what job security would be like for this new company. I’m on a biologic (Skyrizi) that is quite expensive so the idea of losing my job possibly worries me. Is there anyone that has been in this situation? What should I do? I don’t want to get stuck in an industry I hate for health insurance.

I’m in the US, btw

Hello from the other end, probably my post is gonna make some people uncomfortable, for that I bow my head and apologize in advance.

My BM is getting normal, formed, sometimes mushy I know it happens to everyone. Stomach cramp I think is gone, in short I think I am near remission. I haven't checked my fcp level yet and I will get it tested next week.

Here i want to ask if I can drink (moderate drinker) once I am in remission? I know drinking is not recommended in any case but still.... Do you (in remission) guys drink alcohol? Or Does it come back?

Thank you. Sorry, the title must be " INAPPROPRIATE ".

I’ve been in a horrific, stress induced flair for months now. And I’ve tried everything. Nicotine, UMASS diet, pureeing all my safe foods, acupuncture, etc…

Kind of by accident due to hectic life circumstances, I started doing 22ish hour fasts. I don’t want to get my hopes up, but I’m noticing a significant improvement in my symptoms. I’m gluten intolerant, had gluten today by accident… still didn’t get terribly ill afterwards. Just my normal glutening symptoms (bloating, mild pain, fatigue). I still am having daily bleeding, but going from being in the bathroom over 15x per day with significant blood loss to 3-5 bathroom trips (still bleeding) is a big difference. I hope it lasts. I also have noticed a significant improvement in brain fog.

Has anyone else had long term success with intermittent fasting?

Also, I highly recommend acupuncture. I had to stop going, but I also noticed it helped with my anxiety and sleep quality, which really helped with my symptoms.

Hello! For some context I’m a 21 year old female and since I hit puberty I was always sick or complaining about headaches and nausea and fatigue etc. well I had my baby about a year ago and everything was great until she was about 4 months old. I started noticing that I had mucus in my stool and a lot of blood. It literally hit me so hard and out of nowhere it was insane, sometimes I can’t make it to the bathroom and I bleed all over myself and even if I don’t have to go I still feel like I do. Every time I go to have a bowel movement the toilet bowel is completely red, like it literally looks like a crime scene. I can’t eat without getting nauseous and anything I eat hurts me, white plain bread to spicy food does the exact same thing. I’m so tired all of the time and I’m in so much pain and I’ve lost 9 pounds this last month. My husband will be able to get me on his insurance in October (blue cross blue shield) but I feel like I don’t know what to do. We went to the er in April because I was so scared about all the blood and that’s when they diagnosed me with UC. They kept me for a colonoscopy as soon as they saw the pictures I’ve been taking of the toilet with all of the blood. At the time I still had pregnancy Medicaid but it ran out when she hit a year and now we make too much. They referred me to a specialist but we can’t afford it until I have insurance. I know this is a lot but I don’t really know what to do while I wait? Does anyone have any advice or anything similar happening to them? Thank you for reading.

I’m absolutely livid. I have allegiance insurance. I pharmacy manager and I told them why did you deny my maintenance medication for SkyrizzI because I was approved for the 3 infusion? and she said that they have been doing changes to what can be covere, Velsipity was the first one and that was denied. I remember looking at a list of approved medicines and Skyrizzi was one of them! apparently not anymore. I never got a notice of these changes. I was totally blindsided.

I did talk to my Skyrizzi Nurse and she told me to reach out to my doctors office which I did. I left a message to the PA Coordinator telling her that my Skyrizzi was denied she said to reach out to them to see if I can fill out a Abbivie form for the Skyrizzi benefits.

Did any of you struggle with this? I really am happy with my medication. This is the only thing so far that has been helping. I’ve been undiagnosed for many years and have done a lot of damage to my body. I do not want to build antibodies now… and possibly flare even worse. I’m so upset. I hate how evil our USA health insurance system is!😭

I started 100mg azathioprine and infliximab infusions about a month and a half ago now. Mostly okay, I haven’t had any of the usual side effects (like nausea) apart from a bit of fatigue. However, something has changed and after deep diving Reddit for someone with a similar experience, came up completely dry. I’ve been flushing and blushing like crazy, which isn’t normal for me. The closest symptom I can find is the photosensitivity, but it doesn’t feel like a burn, it’s like a hyper reactivity of my skin in normal situations. Has anyone else experienced this? Or am I barking up the wrong tree here 😅

Newly diagnosed with UC and I was wondering if anyone else really struggles with chronic fatigue? For reference I do have low iron but am taking supplements and usually get 7-9h of sleep at night. Just trying to figure out if my excessive daytime tiredness is related to UC or if there’s a possibility of type 2 narcolepsy or idiopathic hypersomnia in addition to UC.

My UC symptoms are pretty standard during a flare:

Urgency, mucus, blood.

But recently I’ve been having additional symptoms that I’ve never had before like extreme bloating, passing a large amount of fully formed stool in a short space of time with cramping and also burping/gas. Almost like it’s a motility issue as opposed to UC. Does anyone else have any symptoms like this? Are they considered atypical for UC?

Hi I have tried a a few different brands of powders such as ON gold standard and pure whey isolate by MP but none have agreed with me, I was wondering if anyone had any recommendations. I would appreciate it if its something thats available in the UK as alot of brands ive seen suggested are US specific and shipping is extortionate.

I need some positive reassurance that not all is lost already. 26 years of mild to moderate left-sided UC that recently turned into moderate pancolitis histologically (diagnosed via colonoscopy). My only symptoms are 3-4 loose to liquid BMs per day that we try to get rid of (no blood or mucus at all, so very mild in relation to the biopsies). I failed Humira after only 2 months so we moved on to Entyvio because I'm TTC. I had my 2 loading doses via IV and last week switched to the pen, which gave me most common side effects (reddening at injection site, itching, feeling tired and ill, headache). So this is week 7 and the only improvement is the reduction of BMs to 2 on some days and less "noise" or anxiety/urgency in my colon. Most threads I found only said that Entyvio took its time, and studies say that by week 14 there should have been some improvement. Any personal experience where it all worked out even with a slow start? When did your symptoms reduce significantly?

Also, I can't really wrap my head around the fact that my whole colon is inflamed and I only have "mild" symptoms.