Colitis questions
Is mesalazine fine to take daily?
How do you guys track your symptoms and flaires?
Is mesalazine fine to take daily?
How do you guys track your symptoms and flaires?
I have always had heavy and nasty periods but about 7 years ago I started having constant left sided pain that got worse around my period, as well as real bad poops. I went to a GP who did a stool test (don't know what was tested exactly but it wasn't done when I was in a flare) who sent me to gynae who said it was probably endo. It took 6 years to get an MRI which showed adhesions on my bowel and issues there which got blamed on endometriosis. Fast forward and I had a laparoscopy done which was negative for endo and apparently ruled out all gynae issues. So I started looking into misdiagnosis and IBD seems to match my symptoms. They are:
Either constant diarrhea or constipation, no in-between.
Fatigue
Weird rashes
Joint pains
Vitamin D deficiency
Low folate
Horrible left sided pain which can also sometimes show up on the right
"Lightning bum"- feels like being stabbed in the butthole.
No ability to control when I poop- when it's happening it's happening.
Hair loss in flare ups.
Pain that's worse around my period but always there.
Random food intolerances.
Total NSAID intolerance.
So does this sound like something I need to query with my GP? Has anyone been misdiagnosed like this?
I was diagnosed with UC nearly 12 years ago after serious flares and eventually getting a colonoscopy in my mid 20s. I switched health insurance which forced me to see a new gi doc who wanted to get a ct scan after mentioning that I have pain after eating and acid reflux. My ct scan shows matted small bowel loops and I assume that’s where the pain is coming from along with the past issues of nausea, vomiting, severe pain with larger meals, etc. Has anyone with UC experienced matted bowel loops because that seems more related to being diagnosed with Crohn’s. I’ve always wondered if it’s really Crohn’s given my other symptoms but previous doctors didn’t really care because it was basically the same treatment with Humira at the time. I feel like I caused irreparable damage cause I wasn’t treating that area since I was only using mesalamine suppositories for the other problem areas. My dad’s sister had Crohn’s which always made me think it was weird for me to have UC, not Crohn’s, but that’s another thing. Anyone’s diagnosis change after a CT scan?
Hi everyone,
I have steroid-refractory lymphocytic microscopic colitis. I also have multiple sclerosis and I’m being treated with Kesimpta, so my treatment options are quite limited.
I received my second Entyvio infusion 3 days ago, but I still feel exactly the same. The diarrhea and abdominal cramping are absolutely awful, and I haven’t noticed even the slightest improvement yet.
If anyone has experience with Entyvio and would be willing to share their story with me, I would be incredibly grateful. It would really help me to hear from people who have been through the same thing.
I wish everyone the very best, and I hope you’re all doing well. ❤️
Hi everyone. I’m 29M and I’m hoping to hear from anyone who has gone through something similar.
About 7 months ago, I suddenly developed uncontrollable diarrhoea and ended up going to the ER. I tested positive for C. diff and was treated with antibiotics. After that, everything returned to normal for about 3 months. During that time, I was extremely careful and avoided anything I thought could trigger a C. diff recurrence.
Then I got a cold/flu, and shortly afterwards the diarrhoea came back badly — around 12–18 times a day. I went to my GP, who did stool tests, and C. diff came back negative. He then referred me for a gastroscopy and colonoscopy with biopsies to try to figure out what was going on.
The biopsies came back inconclusive, but there were clear signs of inflammation in my bowels. My CT scan showed mesenteric fat stranding around the terminal ileum, and during a laparoscopic procedure a few days later to remove my appendix, the surgeon also saw inflammation/fat changes around that area.
Because I smoked for over 10 years and Crohn’s disease runs in my family, the surgeon suspected I might have a mild case of Crohn’s. She started me on budesonide 9 mg daily.
For the first few weeks, I improved quite a bit. I was still going about 3 times a day, but it was no longer watery diarrhoea — just soft stools. Then the stomach pains started again, followed by diarrhoea again, this time with mucus and streaks of red blood. Keep in mind I also followed a strict diet the dietitian in the hospital gave me for Chrons patients.
I contacted the doctor, and she advised me to continue budesonide for another 3 months and also prescribed mesalazine 800 mg daily. Unfortunately, that hasn’t really improved anything.
I’ve now seen a gastroenterologist, and he wants me to stop the budesonide and mesalazine and repeat the colonoscopy with new biopsies. He said it does look like Crohn’s, but it could also be something else, such as a bacterial infection or virus mimicking IBD.
Has anyone else had a similar experience after C. diff, where symptoms returned but C. diff tests were negative? Did it end up being Crohn’s/IBD, post-infectious IBS, another infection, or something else?
I’m honestly exhausted and stressed. It feels like an endless battle with no clear answers or proper treatment plan yet. Any advice or similar experiences would be really appreciated.
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Doctor suggesting biologics as next line of treatment just want to know monthly cost of biologics or biosimilar.
It’s hard to picture a more unsuitable environment than a music festival for somebody with IBD related bowel urgency.
Ridiculously long queues for toilets, huge crowds of people trapping a quick exit and diet options lacking in healthy options.
But i did it. Three years in a row now, and every time I’ve never regretted it (despite some tricky, embarrassing scenarios). I hope to share some of my management tips with you to help deal with, let face it, the worst place for us IBDers haha!
**1. Tell Your Friends**
This list is in order. The number one thing that helped me: I messaged my mates prior (easier by text). I told them:
“There is a good chance i will poo myself this festival, but theres no way im not going”.
I am lucky, in that my mates already know i have IBD and were completely accepting of this when i told them. However, the relief i felt once they knew was immeasurable. I’ve talked about this before, but the anxiety of dealing with bowel urgency/leakage is a lot of the time a head game. It also meant they understood why i was sneaking off to the toilet a fair bit more.
**TIP:** Agree a meeting point. If i disappear - we will meet at X. Signal can be patchy at times. The last thing you want is to feel guilty making them miss a band while you go the port-a-loo.
Sure, it became a good source of a laugh at times. You know what though, humour is the best medicine for me when it comes to the stigma attached.
Now if you don’t have good friends. Then honestly, this is a very good screening method to remove them from your life. I would not have gone, if there response was “well, you shouldn’t be going then” - and that would of hurt a lot.
Telling your mates is absolutely the first step in dealing with IBD flares and the symptoms that come along with it.
**2. Get Yourself an Access Pass**
I’ve actually not followed my own advice here in previous years. An access pass grants you access to the disabled toilets. That often have small, to non existent queues.
**TIP:** Apply for the access pass early. Requirements vary by festival, so its best to check the festival’s accessibility page and bring any supporting evidence they ask for (sometimes they will require a doctors note).
As i walked to the main area ready for the day, I felt that dreaded pinch. It’s a long walk. On the way past the first stage, they had disabled toilets. With no queue! The other toilets were a short walk away, but who knew what the queue situation was.
I had to try, I explained to the staff member on call at the toilets i had Ulcerative colitis. (Actually i said i had Crohn’s - my logic was more people seem to know what Crohn’s is, rather than UC)
It took around 10 mins, to explain my situation before she very kindly let me in. However, i was on the verge of firsthand showing her why i was asking haha
If you have IBD - you certainly qualify for an access pass. I think in the past, i felt as if someone else deserved the limited number of them more. The truth is though, i needed it.
IBD and festival toilets dont mix well together!
**3. Get yourself some pads**
OK - i know I’m obviously biased here. However, IB3 pads were created for exactly this. As i sat on a port-a-loo at Download music festival 2025 thinking to myself, why couldn’t i find some back up protection (apart from very large, uncomfortable, full incontinence diapers, nappies).
https://www.ib3discreet.com/products/ib3-discreet-bowel-urgency-pads
In 2026. They really saved me. Coming from Bad Omens at the main stage, my mate had brought me a Pepsi. I wouldn’t normally touch this stuff, but sweet jesus this liquid sugar tasted so, so good!
After bad Omens had finished playing we headed for a different stage to watch “A Day to Remember”. Suddenly, we hit a bottleneck. A wall of trapped people. It’s like your gut knows when to strike you at the worst possible time.
I told my mates i needed to head to the toilet. We started walking out of the sea of people. Sensing my situation, i sped up, slowly leaving them behind - sorry guys!
While heading to the toilets (at a fair pace now!) . The inevitable happened. Bowel leakage. Waiting in the queue, i was worried that the pad might not have worked. That would of meant missing linkin park and heading back to camp. Guess what though, the IB3 pad worked. It caught it all, and absorbed the smell entirely.
That was a good feeling. It meant everything i had building for a year of prototyping meant, i had created something that truly helped me a bowel urgency situation.
**4. Eat familiar foods**
Food choice will vary festival to festival. It will also be VERY tempting to enjoy yourself as much as possible, including eating the good stuff. However, after my Pepsi incident demonstrates above - festivals are not the place to be trying new foods ha!
Stick with what you know works. Personally, I head for BBQ/meat. That works well for me.
**5. Know your toilets.**
This one is a given. Not a day goes by i don’t know the toilet locations. However, this habit is just as important at a festival.
This also extends to camping spots. Before arriving, figure out a spot that is handy for a toilet near your tent.
**TIP:** Be sure to have the festivals app installed (if available). Often they will have a map that links to google maps so you can know your nearest one. Also, scout out the best ones. Main arena toilets are going to be crowded - Id rather be walking to a quiet location than waiting in a queue of a busy toilet.
**6. Get your poops out early.**
One thing i always figured out works for me. Wake up early. Go the toilet before all those hungover people have even had time to get out of bed!
The crowd at Download 2026 was huge, that meant the toilet queues were also very long!
**7. Why on Earth Would I Choose to go a Festival with Bowel Urgency and Leakage!?!?**
Why do i force myself into these situations? It’s not always the most comfortable situation to be in. Regardless of how well you have prepared for every eventuality. In a tent, 25 mins away from any toilet - can suck.
The reason for me - confidence. If you can handle a music festival. Then you can handle any other situation your bowel throw at you. This symptom can become isolating. I really don’t think it needs to be. Sure, leakage can happen to us now and again. It doesn’t matter. It’s not personal failure. Clean it up, plan for it. Crack on.
You’re likely judging yourself way more than anyone else is. Other people are far too concerned with themselves to really care for more than 20 seconds that you pooped yourself.
Everyones situation is different. But there are pads and diapers that will help amongst tons of other advice out there. You are capable of far more than you think you. Don’t let it hold you back.
The sloppy mud at my first download music festival
**8. My Festival Bowel Urgency Emergency Kit**
• Pads or backup protection
• Wetbag and spare clothing
• Wipes and toilet roll
• Barrier cream
• Spare underwear and bottoms
• Wet/disposal bags
• Hand sanitiser
• Water/electrolytes
• Medication
• Portable tent toilet
**9. You can prepare for bowel urgency without letting it decide whether you get to live your life.**
Music festivals are not exactly built with bowel urgency in mind. The crowds, queues, unfamiliar food, long walks and lack of quick exits can make the whole thing feel like a nightmare before you have even arrived.
But with a bit of planning, honest friends, access to better toilet facilities and a solid backup plan, they do not have to be off limits.
You might still have difficult moments. You might need to leave a set early, use a pad, change clothes, or laugh your way through something embarrassing. That does not mean you have failed. It means you have found a way to keep living your life around a condition that can be incredibly unpredictable.
Since creating IB3, I have spoken with many people in a similar situation who, like me, refuse to let symptoms stop them from enjoying music festivals. Every festival I have managed has built a little more confidence and reminded me that bowel urgency and leakage can be something I prepare for, rather than something that decides what I am allowed to do.
Now go enjoy that music!
With love,
Chris
Original post found here: https://www.ib3discreet.com/blogs/main-just-for-fun/surviving-a-music-festival-with-bowel-urgency
Well after a rough week things settled a little for 24 hours.
Now today started off good managed to get out for shopping. On way home stopped at traffic light I had the worst cramps and sweats come over me. I knew what was coming managed to get about half a mile from home when all hell erupted been so long since I have had an accident embarrassed doesn't cover it
im not diagnosed with anything yet, just rectal inflammation and hemorrhoids, but its likely I have something along the lines of UC or Crohns. anyways, I was originally put on mesalamine suppositories, they made me not able to function, now im on cortenema twice a day.
its only been 2 days but I cant for the life of me retain it. I administer it laying on my side and its fine until a couple minutes in and I have terrible cramping and bathroom urgency.
I guess my question is, is it always like this? does it get easier? any tips?
Hi guy, had a laparoscopy 6 days ago, and confirmed endo on pouch of Douglas, excised and ablated. Don’t have more details yet. I was diagnosed with Crohn’s disease last year, yet I wonder (consider Crohn’s symptoms), of anyone’s experiences with both? Or if endo can cause Crohn’s like symptoms.
Hey guys I’m fairly new to the whole UC disease, just having over 6 months now diagnosed in January. I started having severe urgency so ended up doing a colonoscopy and was diagnosed with proctitis. The urgency has been the worst part for me as I end up going around 15 times a day which blood and mucus, mostly in the morning and then it starts to taper off. Medications wise I have tried mesalamine oral, enema, and suppositories, hydrocortisone enemas, and one course of prednisone. I am currently starting another course now as my urgency has been quite severe still. I am a bit frustrated as I just tapered off a course of
prednisone two weeks ago and it really didn’t do anything for me (which was quite odd to me as I still had urgency and blood). I have tried entyvio for 12 weeks and am currently transitioning to stelara when my insurance approves it and likely remicade after if stelara doesn’t work. I am gluten free now and have cut out most sugar and carbonated drinks and have tried low fodmap but to no avail. I am just extremely exhausted and sick of having accidents driving to work. I am an ICU nurse so my job is fairly stressful. I just wanted to share my experience and see if anyone has had anything similar symptoms wise and/or any advice on how to manage this urgency as it has been severe for the last six months. Thanks guys!
25 yo female, 5’5”, 133 lbs.
About a year ago I began dealing with blood and mucus in my stool. It was treated as hemorrhoids initially with fiber and stool softening medication, but did not improve after 11 weeks.
So a year later, I have gone through two colonoscopies (one without a biopsy, and one with — biopsy was clean), one upper endoscopy, one capsule endoscopy and preliminary CTE scan, a SIBO breath test, and countless stool/blood tests. With these they’ve ruled out celiac, ulcerative colitis, Crohn’s, food intolerances and allergies, various bacteria/viruses/parasites.
However, my capsule endoscopy came back saying the bowel looked normal, they just found approximately 18 small ulcers in the last two sections of my small intestine. And my CT scan showed a completely normal small bowel as well, no thickening or strictures anywhere.
During this time of over a year, I have dealt with NONE OF THE FOLLOWING:
NO abdominal pain, cramps or bloating.
NO diarrhea, constipation, nausea, or vomiting.
NO hemorrhoids or polyps found.
NO fever, weight loss, or loss of appetite.
NO sudden urge to use the bathroom, or pain when going.
NO anemia/iron deficiency.
NO systemic issues like swollen or painful joints, eye or liver issues, or skin rashes/ulcers.
Over this year I have had consistently elevated calprotectin in stool, from 70-230 (To specify, I’ve been told these levels are due to the blood in my intestinal tract interfering with the tests, I don’t know if that matters). But I’ve been tested for CRP levels and they’ve been entirely normal. And my CTE scan I had recently into this year of issues showed a completely normal small intestine, aside from constipation (stool in the small intestine that shouldn’t be there, in my case). My CTE scan also showed I have an umbilical hernia but it’s unclear if this is causing this and the hernia subreddit did not think so either.
My ONLY symptoms all year have been blood and mucus in stool. I would not say a lot, but it has been consistent.
I have had persistent fatigue as well, but my doctors have been unclear on what to attribute it to specifically as i dealt with this problem long before i had issues with blood and mucus — I also have an IGA deficiency that was causing me to deal with the same respiratory infections over and over. (And I have been told having an IGA deficiency makes me more susceptible to developing Crohn’s and Celiac which is why I had extensive testing for both.) and they felt that was also contributing to fatigue, but it is still here after taking immune boosters to successfully give me the antibodies I was not making naturally.
I have chronic low lymphocytes as well, but that’s also been hesitantly attributed to my IGA deficiency at this point. I do not know if Crohn’s can also cause this though.
I suppose my question is, has anyone else with Crohn’s dealt with this in the beginning stages? Could this be Crohn’s, even if everything else has come back relatively negative for it a year into these problems? Can early Crohn’s possibly look like this a year into things, with no other symptoms present?
I do not and have never smoked or vaped, and never drink either if that matters. NO radiation either. I also do not deal with long term/heavy use of NSAIDs.
Thank you in advance to anyone who can answer this.
I want opinions on if you believe I have been blown off by my GI.
I went to my initial appointment today regarding 10 months of bright yellow stools with lots of mucus, I also have extreme full body itching and really bad fatigue which has caused me to be on leave from work for 6 months.
I have to use the toilet 10-20 times a day and experience intense cramping and pain with every bowel movement.
I have low vitamin D, b12, iron, fecal IgA of 1089 and low healthy cholesterol and regular symptomatic hypo episodes of blood sugars below 2.5mmol.
Today I went in for my initial consultation (which lasted 5 minutes) expecting him to really look at my symptoms and hopefully start getting some answers. He told me that I was constipated?! And to take a colonoscopy prep and see him again in 3 months. I explained that I have already done this and it did not help, he said sometimes you don’t do it right and need to go again?!
Can someone tell me if this sounds correct, can constipation cause this? Do I need to go see another GI?
I felt like I was made to feel stupid and that it’s all in my head. I understand I am young (24 years old) but to me this doesn’t explain my issues.
Does anyone have any recommendations on what I should do? Do I go back to my GP and get another referral?
Just had my fecal results back, one of the tests qFIT has come back abnormal and now I'm being fast tracked for signs of bowel cancer. Just curious how common this is for others to go through? I know the odds are pretty low, but cancer is quite prominent in my family, so of course it makes me worry slightly. I'm a 29F
Hi everyone please help me
According to my parents, my digestive problems already started during infancy. Throughout childhood I continued to have gastrointestinal issues, but during the last 5–6 years everything has become dramatically worse.
My symptoms now control almost every aspect of my life. I can barely leave the house without constantly planning around toilets. Every meal feels like a cycle of eating, abdominal pain, cramping, diarrhea, temporary relief, and then it starts all over again. I had to pause my university studies because of my condition and my quality of life has become extremely poor.
There is also a family history of inflammatory bowel disease, as a close family member has ulcerative colitis.
Over many years I've undergone:
Despite all of this, no single diagnosis explains everything.
I've tried many different treatments over the years, including:
None of these have produced lasting improvement.
For about one month I've been taking 16 mg prednisolone daily.
This produced one of the most interesting responses I've ever had.
The dramatic improvement of my skin and the initial improvement of my bowel symptoms make me wonder whether there could be an immune-mediated process that simply hasn't been identified.
Cannabis is one of the very few things that consistently helps.
It significantly reduces my abdominal pain, cramping, burning sensation and the immediate urge to have a bowel movement after eating. It doesn't cure the problem, but it makes the symptoms much more manageable.
As far as I know:
One thing that really confuses me is that I clearly have significant environmental allergies (especially cat and house dust mites with elevated total IgE), chronic eczema, and a constantly runny nose. However, these findings don't seem sufficient to explain the severity of my lifelong gastrointestinal symptoms.
The fact that my eczema disappeared completely on prednisolone and my bowel symptoms initially improved as well makes me wonder whether there could be an underlying immune-mediated disorder that hasn't been identified yet.
Has anyone experienced something similar?
I'm especially interested in conditions that can cause:
Pictures: https://imgur.com/a/condition-since-3-years-LQXp3Ro
At this point I'm wondering whether there could be an underlying immune disorder, eosinophilic gastrointestinal disease, immune dysregulation syndrome, inflammatory condition, primary immunodeficiency, a mast-cell-related disorder that wasn't detected, or something else that has simply been overlooked.
I'd really appreciate any ideas, similar experiences or suggestions for diagnoses that may be worth discussing with my doctors.
Thank you so much for taking the time to read this.
I’ve had my colonoscopy in March 2025. I was diagnosed with Ulcerative Colitis. And started Octasa in October 2025 and then Azathioprine in January 2026.
I’m laying on the floor when I shower. I’ve been sitting on the floor to shower, every shower since about March and it’s now July. I’m started laying flat on my back semi regularly in addition to sitting. I’m 23 years old. I should be standing to shower.
I’ve started dry heaving. Like all the time. For weeks now. I just want to be okay. I had an allergic reaction to an iron infusion so that didn’t help me.
I’ve the opportunity to move countries in the near future but the USA’s health care system and food makes me nervous.
I’ll call my IBD team this week. I just want to know if anyone has any advice for the symptoms or even the stress.
Cause laying on the shower floor is a new low both literally and physically.
My 23 year-old daughter has ulcerative colitis and her G.I. doctor just recommended Envytio going forward. Looking for any information about how this treatment has helped you? Or other side effects to be aware of.
I have recently been/am being investigated for several autoimmune conditions, and everything has come back normal UNTIL I had my calprotectin (600+). My only symptoms are joint pain in my hands and fatigue, and I've been referred to a gastroenterologist under suspection of an IBD (my dad has ulcerative colitis + anklyosing spondylitis and i have the HLA B27 gene too), but its to my understanding that this isnt very typical of IBD to present this way without ANY nausea, atypical stool, weight loss, or literally anything feeling/looking wrong. I know this could just be me looking in all the wrong places, but i can't find any similar experiences online, and im not really sure what to expect. I feel like I'm going in the wrong direction. Anyone experience this?
! NOT LOOKING FOR DIAGNOSIS, JUST A SIMILAR EXPERIENCE!
Hi everyone,
I’ve had c diff three times within the last two months. Each time I was treated with vanco, but unfortunately it kept coming back.
Yesterday I had an fmt in capsules at the hospital. Since yesterday I’ve been having diarrhea. My doctor told me this can happen after FMT, but I’m still feeling a bit worried.
The thing is, during the week before the FMT I wasn’t having any diarrhea. I had to do a full bowel prep the day before the procedure, and I feel like that’s what really threw my gut out of balance.
Has anyone else experienced diarrhea right after capsule FMT? If so, how long did it last?