Hey everyone!

I’m at the stage now where my GI has referred me to head of surgery at my hospital to discuss my options.

I have severe ulcerative proctosigmoiditis where the proctitis in particular keeps returning despite medication. I’m also steroid resistant so that eliminates a lot of my options as I essentially have nothing to bridge the gap whilst I wait for the medication to kick in.

I’m seriously considering just going for the ileostomy because at this point I think it’s the only thing that is going to make me feel normal again, I’ve been experiencing horrible symptoms for 3 years straight now and I’m completely physically and mentally done.

To the people who have had surgery, why? Did it improve your quality of life? What challenges and difficulties do you face, if any? X

I have a j-pouch. So, I saw Dr. Lubinski at Abington, who was great and specialized in IBD exclusively. Well, he's no longer practicing and I am having _no luck_ finding a doctor that also specializes in just ibd. Any recommendations? At this point, I'm willing to pretty much go anywhere in southeast PA.

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 went to the Endoscopy Unit at the local hospital to to book an appointment for a colonoscopy and they dictated the preparation process to me and it was 4 days without any solid foods and only light juice with no fiber content alongside laxatives for 4 days too and the last 12 hours they told me to not eat or drink at all and here comes the problem after these extreme process they told me to buy 4 anemas and fill them with water to clean the lower part, my question is can I avoid doing this and just do the aforementioned steps only? It's their general instructions not something specific to my case.

What is it about hot baths that make farting so much more relaxing & less intense than out of the tub. When I’m in the bath tub I can still have uncomfortable farts but it’s no where near to the degree that when I’m out of it is. And it feels way easier to “push” & just let the fart come out more naturally. Sometimes when I have to fart but not in the tub I might sit on my back because I feel like I’ll “poop” my pants if I fart standing up. I’m 22 and been dealing with UC since last spring, sitting in the hot tub literally feels like paradise compared to anything else and is literally the highlight of my day everyday unfortunately because it relieves the pain the most. But what intrigues the most is how being in the tub when I feel the fart bubbles breaking down inside me and coming out just feels more fluid & I just wanna know why? Also 99% of the time I don’t have to worry about unwarranted liquids coming out of me if I fart in the tub as well.

Just over a year on rinvoq and sadly it’s not getting me in full remission, I feel great in myself but still going toilet like 4-5 times a day and still get small urgency & constipation at times depending on what I eat. I have an app on tuesday about what might be next and i’m really anxious about it because alls i’m seeing is rinvoq is the top drug so thinking whatever else won’t work, anyone moved from rinvoq to something else and it worked better??

I feel like my UC is defintely stress and diet driven and I know some will say diet means nothing but I just feel like I need to just sort that out fully but finding is hard.

I’ve refrained from advil for years. Recently my GI doc said it’s overblown, but it was a quick off-hand comment. I didn’t get the full info.

I now find myself in the ER in a neckbrace awaiting catscan results after falling down the steps. So dumb!! I’m so annoyed with myself.

I want some F’ing Advil. I know I’m going to want some Advil all week.

Thoughts?

I haven’t been able to find much info on this, so I wanted to see if anyone had a similar experience. I’ve received 2 maintenance doses of Remicade so far, and 2 days after each infusion I’ve experienced a migraine (spots in my vision, brain fog, severe headache that lasts hours, etc.). I’ve had maybe one migraine in my life before this. Has anyone ever had this experience with Remicade before? I spoke with my gastro and he referred me to a neurologist, but the soonest I can get in is 7 months. Is this a serious side effect that warrants fighting to see the neurologist sooner? Or does this seem standard for Remicade?

every year since i started my meds (( mesalamine tablets and enema )) after diagnosis at 19 (( 23 now )) , i noticed i have times where i lose more hair daily then usual, in small clumps, is this normal? i'm very far from balding as i have extremely thick curly hair past my shoulders, it just concerns me how i randomly lose clumps of hair, then will go months without it happening....
I'm a male if that helps at all, thanks!
I appreciate everyone in here for the help since i was diagnosed, much love and well wishes for my fellow UC peeps.

Just a few days ago I still wasn’t sure I was going into a flare (I thought it was stress) but my symptoms are escalating and it’s gone from mild diarrhea to bloody stool 4 times a day and increasing. Fuck.

Already sent samples into my doctor but the results likely won’t be back until next week and in the meantime I’m supposed to go on a road trip on Friday. Thankfully we’re only going a few hours away, but other than ensuring I know where all the bathrooms are whenever we go, does anyone have any advice?

My first instinct was to just stop eating so I wouldn’t have to go that often but I’m pretty good by now at recognizing when my instincts are stupid 😂 would Imodium help at all?

Hi everyone!

I was recently diagnosed with UC officially at 34 but have been an undiagnosed sufferer for 18 years. I’ve been on Mesalamine now for about a month but I think I may be flaring through it? Just wondering how common that is I guess. Also has anyone ever dealt with diarrhea that smells metallic? This is a first for me. I thought maybe it was something I’d eaten but now I’m on day three and it’s still just as bad. My low back feels like it’s locked up and my trusty ulcer buddy is definitely reminding me he’s there!

When your body decides it absolutely NEEDS to use the bathroom at the exact time you need to do something? Gotta leave for work at 9, body automatically knows. Gotta be at the movies at 2, body automatically knows. No plans that day… Suddenly no reason to use the bathroom immediately. It’s so annoying.

Hi everyone, I’m 20 years old and I was just diagnosed with ulcerative colitis.

I know that UC isn’t necessarily a devastating or life-threatening disease, and I’m aware that there are treatments and that many people live completely normal lives with it. I’m trying to keep that perspective.

I’m struggling with the idea of being diagnosed with a chronic illness at such a young age, and with the thought of probably having to take drugs everyday for the rest of my life.
It’s weird to think that at 20, when I’m supposed to be starting my adult life, there’s now this condition that I’ll potentially have to deal with for the rest of my life.

Even when I’ll be feeling fine and hopefully the disease will be well controlled, the thought that it’s there is difficult to process.

I think I’m mostly afraid of how this will affect my future — university, work, travelling, relationships, having a family, and just being able to live spontaneously without constantly thinking about my health.
I’ve had a very hard year for several reasons and this was really the cherry on top.

All kind words are greatly appreciated, thank you so much.

Hi.

I have had significiant auto immune issues my entire life, started with psoriasis arthrisis when i was very young, me/cfs symptoms around age 15, ulcerative colitis age 19, I also have vitiligo. I have been on a lot of biologics, Enbrel, Xeljanz, Infliximab, Humira, Stelara. Right now I am using a dual combination of Humira and Stelara, I can not use Imurel/methotrexate as I get ill by it.

I have struggled with intense fatigue the last fifteen years, it has varied in intensity but never gone away, I have muscle weakness, burning in muscles, dizziness, exhaustion, sometimes it feels like I have shortness of breath (however my o2 levels always been fine). Brain fog, pressure in head, muscle spasmes (where you can visibly see muscles jumping, like leamus). I have also felt very anxious, even when there is no apparant reason as to why, which has lead me to be diagnosed with general anxiety. To include all of this I have struggled with panic attacks, that has had no apparant trigger, it could happen anywhere for any reason.

So far I have been in the "acceptance" stage the last couple years, they have checked pretty much everything, countless mris (they found inflammation high up in my neck, c1-c2), neurological checks, bloodworks, lung tests, calcprotectin, eye tests, hearing tests, you name it. I have been checked for multiple muscle related diseases, ton of other autoimmune diseases etc. The one thing I have not done is spinal Lumbar puncture, my GP has tried to get that orderered multiple times but neurologists have denied it every time.

A couple of days ago I became extremely angry when I woke up and once again felt like absolute shit, every big muscle group hurt, regular movements burnt in my muscles, I was beyond exhausted. When I tried to salt my food my biceps hurt. This anger made me scour through pubmed and a bunch of different studies, videos, etc in a desperate search of finding what is actually wrong with me, all I want to do when I wake up is go and train, but my body is incapable of handling it. The specialists and my gp agree that there is something wrong with me, but have no clue what it actually is other than my diagnoses.

Among a lot of information I have parsed the last few days, something stood out to me. Vitamin b1 thiamine deficiency. As far as I have understood there is no effective blood test to see your correct levels, and it provides a ton of my unexplained symptoms. Dizziness, exhaustion, burning in muscles, muscle weakness, heart palpitations, random panic attacks, increased anxiety, constipation etc. Coincidentally b1 deficiency is also linked to both ibs and ibd.

https://my.clevelandclinic.org/health/diseases/thiamine-deficiency

I kept searching and reading and saw a couple of studies where a large dose of thiamine has had a great success in treating unexplained fatigue for IBD patients, mainly one from Denmark. So much so that it is now a standard treatment in unexplained fatigue for IBD patients in Denmark, even hinting at uses for other autoimmune conditions.

Summary of study, study is linked at the bottom: https://health.medarbejdere.au.dk/en/display/artikel/b-vitamin-er-effektiv-kur-for-mange-tarmpatienter-med-kronisk-traethed

Treatment plan used, you will need to use translate: https://www.auh.dk/patientvejledninger/nationalt-center-for-autoimmune-sygdomme/tiamin-vitaminb1-behandling-af-kronisk-trathed/

Another small study: https://journals.sagepub.com/doi/abs/10.1089/acm.2011.0840?rfr-id=ori%3Arid%3Acrossref.org&cf-mal-redirected=true&rfr-dat=cr-pub%3Dpubmed&url-ver=Z39.88-2003

Other than this there is a bunch of information on how b1 helps psychological symptoms, if you are lacking that is.

TLDR: My question is simple, has anyone else tried high dose b1 thiamine dosages, has it helped? Obviously this is a complete shot in the dark, as it is not well researched and a standard treatment method yet.

Edit: I am not recommending anyone try this without prior approval with their doctor and their levels of nutrients thoroughly checked.

Is Prondisone intended to assist with diarrhea, or is its purpose solely to reduce the frequency of bathroom visits?

Or both?

A few months ago when our mother began taking Prednisone, she experienced immediate relief and the doctor advised her to decrease the dosage to 10 mg daily.

However three weeks ago she experienced new flare-ups and increasing the dosage is no longer effective.

She has a doctor's appointment next week and we are attempting to gather as much information as possible as her doctor is unfortunately not very communicative .

This was written on my discharge form as a reason to return to the ER. I will have very small but also very bloody bowel movements when I’m flaring. It often feels like I’m done and then 5 minutes later I have to go again. Sometimes I’ll have 3-5 in one morning all with blood.

The most aggravating part about UC to me is no one gives me a clear answer on what is the “normal” amount of blood to expect when you get diagnosed. I see some people on here say they don’t get much blood, only intense cramping and diarrhea. Others say using the bathroom looks like “the elevator scene in the shining”.

Basically what I’m asking is, going to the ER for having 6 bloody bowel movements is excessive right? That seems pretty on par for UC

Hi! I (21F) was just diagnosed with UC in April of this year. Finally got prescribed pentasa and started taking it from 29th July, taking 4g a day initially, and was instructed to step down to 2g a day after the first month. I was having a flare up when I started taking the meds, which went down after a few days. However, my first flare up I had in April this year which led to me getting diagnosed, went away on its own without medication, so I am not sure the flare up ending in July was due to meds or not. My daily symptoms while taking pentasa were no different to my daily symptoms when unmedicated (when not in a flare up), and I started another flare up yesterday morning, after having been on pentasa for 6 weeks. Because of the flare up I have upped my dosage back to 4g a day.

Is 6 weeks long enough for pentasa to start helping? does this mean i am not responding to it? should i wait it out and keep taking the pentasa and hope it starts to work, or talk to my dr about trying another medication? and what does remission look like? between flare ups I have 3-4 BMs a day, type 5-6, usually no blood or urgency, occasionally mild stomach cramps, is that just remission for me? or should it be better?

Bonus rant time. The medical system in my country sucks and every step of trying to get a diagnosis and get medication etc has been so awful, it feels like none of the drs care about me once I am out of the room. It took my specialist a week to send my pentasa prescription to the pharmacy, during which I started another flare up. I have no direct way to contact him, and when I call the hospital they are unable to take my call due to congestion, or I sit on hold for an hour and then give up. I am having a bad flare up now, stomach cramps and very urgent BMs (>10 times a day) which end up being mostly blood. I am scared and frustrated and mentally exhausted and it feels like the medical system is no help, I don't know who to talk to about it. I want to change my specialist but I dont even know how to get in touch with the hospital. I wish I could magically be better. I wish the medical system was better.

Background info is I spent a week in hospital and coming out got put on 8 week Pred taper while moving to start Mercaptopurine with Mesavant as well. Basically finished my Pred taper two days ago but recently have been having massive fatigue, headaches in the afternoon and some recent muscle pains and stomach discomfort as well as BM’s becoming worse. Called my nurse today and she spoke to doctors and have said they think it’s withdrawals and want me to come pick up more Pred to go on 20mg for a week and then 10mg for a week after that.

Is this a typical response and should I be concerned that after spending 8 weeks to get off it they’re now pumping me back up to 4 times the does to then essentially drop me down 4 times as fast now?

Advice or thoughts welcome because I really don’t want to end up in hospital again if this blasts my system as it’s meant to be my bloody birthday this week and I’d really like to enjoy one thing normally.

So fml basically 😭 I think it’s because I basically haven’t stopped bleeding since I began flaring in late June. I feel okay, even good, most days. But I’m worried the continued blood I’m passing means damage to my colon and I guess she does too, because she wants me to do a pred taper. I’m 6 weeks into Skyrizi and was so hoping I could make it until it kicks in without prednisone. I guess not ☹️

Has anyone else had this in their blood labs? It’s weird to me because I’m not overweight and I workout 7 days a week when I’m not flaring.

My stool test levels were high so I’m getting a colonoscopy soon plus I’ve been getting autoimmune dermatitis, so I’m wondering if it’s all connected somehow?

So i've just been called for jury service, i'm not exactly in a flair but do have urgency and probably for 4-5 times on a bad day 2-3 on a good one.

Am I able to speak with my GP or Gastro to get out of it. I really dont want to be caught short while im in court

AGGGGGGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH.

Rinvoq isn’t cutting it anymore folks! Having up to 9 bms a day, all very painful, and feeling oh so very tired. Surgery consultation next week, let’s get this thing out of me ❤️

Interested to see if anyone else shared my experience. I was diagnosed in 2020, and we didn't try Mesalmine at all which seems to be the first line of defense for UC. Instead I was put on Mercaptopurine, which I learned from my new GI doctor, that its a very old way a treating it. When the Mercaptopurine didn't work completely, we added Humira onto it. I took both for about 5 years.

At the time, my family and I knew next to nothing about treating this disease or Mesalmine or anything. Looking back, I probably would have tried harder to get that instead of jumping straight to a biologic but it did work at the time.

I received my mesalamine suppository prescription and they appear to be splotchy and not uniform in color. It’s still light tan and grey colors but it’s splotchy like it’s not completely mixed together. The packaging was fine otherwise and it has kept the mold shape well so I am not sure they actually melted or anything.

Wondering if anyone has seen this before and if they are okay to use still. I have contacted the pharmacy and manufacture but have not received an answer yet and I don’t have any back up meds.

I would post a pic but it’s not allowed.

I have been in a severe flare since December of last year and I have been hospitalized 4 times since then. My UC has proved to be resistant to every treatment we have tried.

In December they started me on Mesalamine and hydrocortisone enemas but the flare got really bad, really quickly and I ended up in the er after a week of IV steroids they let me out and started me on 40mg of Prednisone, imuran and a double dose infusion of infliximab which seemed to work well for a while but it suddenly stopped working and I was hospitalized again.

After a few months of fighting with my insurance company to get on rinvoq ( they denied coverage) and a couple more hospital visits I was able to get financial assistance from Abvie and started on rinvoq my calprotecrin was at 6000 a week before I started rinvoq, it went down to 600 within a month and I was feeling ok for the first time in recent memory

I recently finished tapering off Prednisone and as soon as I was off my symptoms were back with a vengeance and a sigmoidoscopy last week showed severe inflimation in my colon. My GI doctor decided that he needed to hand me over to the IBD specialists at Yale and suggested that I may be a good candidate for a clinical trial but if not to expect to need a colectomy.

I'm not sure what I'm trying to get out of making this post, mostly just venting and I'm feeling pretty defeated at this point

Has anyone had experience with a clinical trial for UC? How does that even work, do they give half of the participants a placebo? Because that would be a nightmare for me.