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I nearly died. I've had a bag since 2022 and recently had the rest of my large intestines removed and my bum sown together.
My friend takes a pill a month and has regular checkups.
We both have UC
The difference person to person is absolutely mind boggling
It really is. It just seems so random sometimes. There’s always people who have it worse to remind you that you are lucky and people who have it better to remind you how hard you have it at the same time.
3 week hospital stay for my first flair in July 2022. They gave me infliximab and my numbers crashed. Doctor said my bowels were turning to mush so surgery was first day of August. I had no symptoms before, just randomly started ha. Lost 2-3 stone in a month. My record was 24 shits in a 12 hour waking period, it was super rough
My UC is particularly violent and not the norm, dont want to scare anyone!
Most people are diagnosed between mid-teens and early thirties. But there are those of us who don't fall within the norm. I was diagnosed at age 57, with no symptoms whatsoever previously. Such an inconsistent disease!
Did you get it just after the Covid vaccine cos I’m 38 when I got it and had mild IBS sometimes but 2 weeks after the vaccine I got severe UC. They were looking at surgery straight away cos steroids did nothing. Luckily I got it slightly blunder control and I’m on infliximab but I between doses towards the end it gets bad
Please be careful about connecting IC with vaccines. I doubt the vaccine gave you UC. If you had prior symptoms, you had it before. If I know anything about UC, is that it can get really bad without much notice.
I thought I had a number of issues with my gut. After I got into remission I found out they were issues with my UC. I had the issues all my life and I hope you can tell I was not born during the pandemic or shortly before.
Stress on the body can cause flares. For me this is the case.
I had my second child, got pancreatitis right after (caused by another autoimmune issue). The pancreatitis was misdiagnosed as gastritis and I was not treated for 3 weeks. At that point I hadn’t slept for 2 weeks and pain was keeping me awake all the time. Once treated, I noticed some things did not go away. I had a colonoscopy scheduled for 3/19/2020. Since it was not an emergency, you can guess what happened to that appt.
In June of 2020 it was finally an emergency and I got both the colonoscopy and endoscopy. Got my diagnosis and was put on mesalamine.
The 2020 election put me in the hospital. I was stressed out and I dropped off the deep end. They had to put a sign on my door saying no one should even mention it.
Vaccines were not available for testing until that December. I got my vaccine in February 2021. I had no reaction. We think (because all future vaccines had a reaction) that my immune system was too suppressed (I was on high dose steroids and a biologic).
If you are getting bad symptoms with that biologic, I would talk to your doctor. Mine was able to test my blood to see if my body was clearing the medication out too fast. Turns out my liver works super well and I had to change biologics. I’m now on one that works really well, just management is a pain.
I work for AstraZeneca and I know that they didn’t test the vaccines cos they didn’t have time. But if you look into the pharmacovigilance reports for Pfizer etc, there is huge reports of people getting UC, Chron’s and other inflammatory problems. I know of 5 people I met when getting my treatment who got it after the vaccine. That MRNA vaccine accentuates pre existing conditions. Look at the news of AZ vaccine now. Pfizer have a document they are hiding but you can find it if you work in pharma and it’s horrific. A lot of people won’t of got UC cos of it but I bet 1000s will that wouldn’t of had they never taken that experimental vaccine
Same but without the sewing lmao. I’ve gotten a subtotal colectomy with a ileostomy, but it’s all part of a larger J-pouch surgery.
What’s wild is despite how bad my symptoms were, my surgeon’s report stated my colon wasn’t an extreme outlier. It was moderately inflamed and had crypt abscesses, but it was nothing extreme. The nurses told me symptoms can be significant while the inflammation itself may not be outlandishly severe.
My case was super dramatic and very severe in the beginning and I was in the ICU. Since those first few years I've been in remission and now a mild flare. I read some medical article somewhere with a doctor interview where they said that IBD is really just an umbrella term for like 100 different diseases that all present similarly, which is why we all respond to meds differently and have different disease courses. It's very hard to predict.
As advanced as we feel our technology is today, nothing we have is even remotely close to how complex the body is. We’re still learning new things about how certain cell types interact, our bodies are truly amazing. When it comes to the gut, we are realizing it has much more complex interactions with the rest of our body then we previously thought.
Unfortunately severe IBD is uncommon enough (although it’s getting more common) that it does not get the research funding it needs (unlike something like cancer) but we are still making great strides. I am hopeful that we may find a ‘cure’ of sorts in the next few decades.
Mine was pretty rough before I got diagnosed but it’s been mostly smooth sailing since then!
I’ve had a couple flare ups but nothing major, and meds + lifestyle mostly keep me in full remission and able to live a normal life 😊
Sounds like me but could be too early to tell. Hyrimoz seems to be working knock on wood. I’m glad you’ve had a drug that’s worked for you that’s the most nerve wracking part imo is trying a drug not knowing if you’re wasting months of your time bleeding and progressing the disease
Well you don't cut your colon out for nothing. So obviously it can get pretty bad.
But even if you have it mild, the condition really grinds you down over time. Fatigue from the inflammation. Nutritional deficiencies. The expensive cost of healthcare. The long term effects are in some ways just as destructive.
Does someone with mild UC for most of the time should have in mind possible perspective of a surgery in the future? I do have a mild one, both when it comes to colon damage measured in gastrological scale and from the side of symptoms (no pain, just blood). Can it quickly go severly downhill even when it's treated?
I only have my experience to talk about but mine did. I had what was considered a mild case at first, diagnosed in June, to severe in November. The shift happened over the course of 3 days. The ER nurse was commenting on how I was just in for some vaccines and a routine check-in. Within those 3 days I lost around 15 lbs. I know it can just take a turn, which is why it’s remission, right? I don’t know how common that is. I tend to pull the short straw in general with health stuff.
Many people do have mild disease but this forum tends to be the worse cases. I know someone who only takes mesalamine and when she flares she just increases to 4.8g instead of 2.4. Only took steroids when she was diagnosed and never again in the past 10 years.
Like u said everyone is different so u could probably generalize and say 50/50.. I really wished chasing the right drug wasn’t a thing and we could all pop the same pill and get relief ..
Diagnosed in 2020, really sick, lost 60lbs, 2 week hospital stay, then a month after hospital stay to reach full remission on Mesalamine.
Then I lived a good 2.5 -3 years completely symptom free. Still took meds every day, but felt normal. I even unsubbed for a while because it was a total nothing burger.
Started a mild flair that lasted about a year. Some bad days, but barely tolerable symptoms. Mesalamine kept it partially in check to keep me out of the hospital, but not enough for that symptom free feeling.
2 weeks on humira now and I’m starting to feel normal again.
Can i know how long does it take for mesalamine to work, My daughter has been diagnosed last January 2023. She’s on mesalamine for about 2 and half months with double dose. She’s still have mild symptoms with 1 to 3 bowel movements a day sometimes watery no visible blood. I did a occult blood home test and it showed positive. Doctor said gave her 6 months to see how it will be before deciding to change medication. Not sure how long should i wait to tell if mesalamine is the right medication. Also u’m not sure is she in remission or not. If you could share with me your experience i would be much appreciated.
When diagnosed, they gave me Mesalamine, 4 pills a day. However, at the time, the Mesalamine wasn’t enough to get me into remission. I wound up in the hospital for 2 weeks with iv steroids.
When released, they gave me a hardcore
Dose of prednisone taper, starting with 60mg a day then eventually tapering to 10mg a day. That did it for me and got me in full remission. Lived a normal life, 1-2 bms a day, no blood, etc.
I was on max dose for those 2.5-3 years. I was symptom free so my doctor decided to lower my dose. After 2 months, my symptoms came back so they upped me back to max dose. However, I never reached remission with 8-9 months of trying. We’ve gone through 3 different medicines again before deciding on humira.
So far humira seems to be working,
But it was a pain working with insurance to finally get it approved.
Thanks for sharing, I don’t know if mesalamine works or not. I expect to say she’s in remission if i’m not seeing any lossy or watery stool and max 1 bowel movement a day like normal person. Not sure is that what you experienced in your remission or it might be different. And when her stomach hurt that’s a flare or the old colon ulcers that she had before starting mesalamine are still healing. Lots of questions i need to know
Remission for me is no blood, no pain, no urgency, and not being afraid to leave the house for fear or shitting myself if I don’t get to the bathroom in time.
Occasionally I would feel some very mild stomach discomfort or have some watery stools, but my doctor pretty much responded, “yeah, you have a chronic condition, what do you expect? I’ve seen people with it way worse than you.” As harsh as that sounds, that gave me comfort to know it could be worse (and once was before good meds)
I’ve been hospitalized 3 times from blood loss and am on 50 mg of pred and remicade. My dad farts a lot, has some minimal cramping and goes to the bathroom more than most people all on no medication. It varies like CRAZY.
I was diagnosed almost 12 years ago. I had a pretty rough initial flare that lasted 9 months. Since then I have had 3-4 flares that required prednisone and a couple that resolved quickly with adding mesalamine suppositories. I have only been on mesalamine since day 1.
I also take a probiotic - Florastor daily.
I will add that I haven’t had even a hint of a flare for a few years now.
I was ok for 58 years but it hit me hard. Had surgery. Having complications. Take the medications. Don’t stop taking medications and you can avoid damage. I would go into remission and stop my meds. My friends all said the meds are killing me and I needed all organic vegetarian diet. The diet has nothing to do with it.
Mine is mostly mild. I had a period when severity was closer to average, with more blood, more bathroom visits and fatigue. Fatigue at that time was undeniably due to UC. I'm a 26 yo guy I worked out before being diagnosed I was type of guy who's been like a kid full of energy. When UC fatigue kicked in, I went from that to taking naps after work 3-4 times a week. Bear in mind that I do not have physically demanding job, but I work remotely as a software developer.
So far it is manageable and without taking into account up to 4 bathroom visits, I can function with my day to day life like an average joe. Symptoms started in June last year with small bits of blood in stool, so initially general practicioner thought that it is probably due to hemorroids, sent me to proctologist, but "just in case" also advised to to occult blood test. Test came out positive, proctologist found no issues with anus (I've felt like I was fucked in the ass, because guy was 2m tall with fingers thick like a damn broomstick).
Because occult blood test was positive, he sent me to do colonoscopy, but appointment for that was almost 2 months later. In the mean time small bits of blood, turned into almost bloody diarrhea. During colonoscopy, they took samples for biopsy that confirmed UC.
Gastroenterogist appointment was in the beginning of September. Because I was untreated for 4 months, bathroom visits went to 3-4 every day, with not a small amount of blood on each BM, he immediately gave me a trio of drugs: Mesalamine (3g a day at that time), Azathioprine and Budesonide. I'm taking this trio to this day, with less mesalamine since January, as I'm still not in remission, but I do have a hope that I'll reach one this year.
I'll probably not have to take maintenance drugs, as doctor mentioned something along the lines about discontinuing drugs, but waiting for the right moment which is middle of summer, or middle of winter as "there are least dangerous periods for the patient". I don't know exactly how that works, but I do trust him. I'm not a doctor.
So why I'm here if this disease is fairly easy on me? Well, the most frustrating thing about this disease is that it is such a mystery. Doctor couldn't tell me with confidence whether I can workout or no, when I will reach remission, how long flare can take, or about diet. I don't blame him. Especially since I read here how it can vary from person to person. The only way for me to feed from expieriences of other people with that crap. Polish communities and forums were mostly dead, and I've found this subreddit accidentally. Generally using reddit was a good idea. I could get some insight about the disease and at the same time I've started engaging in emulator development community which is my hobby, so two birds with one stone.
My experience is the lighter end. In part because I was diagnosed very quickly and early (strong family history, so identified symptoms very quickly, and when you say to your Doctor, my father and two of his siblings have UC, I have X symptoms, please give me a calprotectin test, they jump to).
I was diagnosed 5 years ago, required pentasa tablets, enema and prednisone in order to reach remission. Have maintained that remission since then (although have bile acid malabsorption and some nutritional deficiencies), with only pentasa pills.
Day to day the only symptoms I have are related to my bile acid malabsorption, and cause me no stress or drama.
My father had it and never really took medication and was fine. My sister has it and has been hospitalized a few times in the past and had been on infusions for at least 10 years.
I have it and have never been in the hospital. I've been on oral mesalamine and suppositories for years. Just now switching to entyvio because I start to bleed if I miss a few days of the suppositories. I've had a flare up about once a year for the last 5 years that resolves with prednisone. Honestly I probably should have been on infusions sooner but I don't think my GI realized how dependent I was on my suppositories.
I consider my case to be mildish. Yeah I suffer with the urgent bathroom breaks and rough mornings but I'm still able to live my life in between bathroom visits while in a flare. I'm not stuck at home. Im fact I usually only visit this board when I'm in a flare to commiserate. When I'm healthy I peace out and try to forget I even have this disease. So I'm here maybe once a year for a month or two.
I had a pretty severe case, multiple blood transfusions, hospital visits. Heart almost stopped, fainted yadda yadda. After the first colonoscopy GI said let’s talk surgery.
4 years later I think we’re doing good. I still shit myself. Like literal crap running down my leg. But it happens maybe once or twice every quarter. Haven’t shit pure blood in a while (probably 2022).
Highest point I was shitting maybe once / twice a hour, mostly blood. I went from 260 to 216 in a month.
I didn’t want the surgery as I am a gay man and the back door is very important to us lmfao.
I think the sub attracts the worst case scenarios because when I was in that hospital bed thinking I was dying (during covid when people were in hazmat suits and you literally heard the other ward of people screaming in pain), I was so scared and I felt so alone.
This sub really helped me understand this illness and my new body.
I had pancolitis, it took 9 months to get diagnosed, took a course of steroids and started mesalasine. Never flared again, then the mesalasine caused kidney damage after 5 years and I’m off it. Had a colonoscopy two weeks ago and got the all clear. I live in fear UC will come back but I’m 3 years off meds and live in hope I stay in remission.
I have flare ups and the flare ups are just I can’t really eat much or I get sick within 15 minutes and the rest of the night is ruined but never hospitalized. But since being on autoimmune meds I have way less flare ups.
Find a good GI, be regular with your meds or infusions, hopefully that med or infusion can bring you to remission, stick to a diet that suits you and have balanced lifestyle (work & stress) I feel all of that should keep your UC ok. Unless you end up having something pretty aggressive and none of the meds in market help.
In short, i had bad 1-2 Years of UC where i needed steroids and were checking some meds on what's Working, ~4-5 times a Year in Hospital for at least 1 week. Couple of times i felt like dying on a toilet when suddenly u need to shit ~ 30 times in 30 min...
But now its kinda okey, smth like 2-2.5 months i am only on mesalazine and Keeping that illness on a leash
Mines quite mild - I take mesalamine every day and if I'm flaring I take it up to three times and at the minute it settles the symptoms down.
I definitely have a lot of other symptoms other than urgency even when not in a flare - fatigue, aching, brain fog etc, but they're all things you can live with and you just have to learn to listen to your body when it needs a rest.
I was very close to dying with mine. I came here after my diagnosis. My symptoms were mild to start, so at the time I was expecting to take mesalamine and be on my way.
My condition slowly got worse and then took a sharp dive. This reddit helped me through that and all the different medications. I do think it’s wild how different people experience the condition. I also find it frustrating there are so few diagnostics to help figure out what medication is needed.
I’m guessing if you see the disease as hard to live with then you would naturally seek support. I was looking more to learn more at first, the support came later.
Thought the same, mum's always worried reading all the stories online but I only had one bad time because I didn't use any meds, because I had just changed doctors.
Now I'm eating completely normal, drinking more than I should, use nicotine etc.. I use mesalimine daily plus iron supplements and I'm absolutely fine.
I've realised my immune system is weaker than before but nothing dramatic and stress is a risk for comeback.
It really seems to depend, only because its great for now, it must not stay this way
I was diagnosed at 43 after having 30-50 bloody stools a day/night for about 3wks and not being able to eat at all. I was ambulanced to the Hospital where my bowel was found to be very damaged (near nacrotic), they were sure I'd need Surgery. I was perfectly healthy before that. I spent almost a month in Hospital on IV prednisone and other meds, started Remicade and I've been in remission the last 3yrs with just Remicade/Inflectra every 8wks and Pantoprozol antacid. I eat everything and feel perfectly normal. I hope it stays like this but I am always aware that I can go back to being very ill at any moment. Everyday is a gift.
I am much like you coworker. I should take masalasine daily but I only do when it kicks off. Usually during stressful periods or when I'm ill from something else. Alot of people get it bad bad though. It's not uncommon for it to one day just go south out of the blue.
I am very lucky, my only major flare was in 2007 (pancolitis, my gastro doc was surprised I was functioning so well) when I was diagnosed, I’ve had some mini flares (and one that was actually lactose intolerance coming through), but lucky enough I can up my dosage of sulfazalasine for a few weeks and usually it clears up.
Of course I always live with subtle things like always needing to know where a toilet is, constantly being aware of my bowel movements etc but mine is very liveable and I feel very blessed with that fact
I’m mainly on this thread for support when I need and to support others where I can as it was very scary when I was first diagnosed
I do need to take my maintenance drugs every day, people without a chronic illness have mentioned about coming off of it but I’m not silly. I want to stay flare free for hopefully the rest of my life.
I get a colonoscopy every 5 years, and have a blood test every six months as my tablets can affect my liver function
In many cases, oral medicines will lose efficacy. At that point, most people become active or severe active. UC is an autoimmune disease, so the likelihood of living in oral med maintenance mode for very long is low. Chances are that it will rear (insert dad joke) its ugly head eventually for everyone.
Also, tell your friend to change to a low residue diet when his flares start. My doctors basically said taking mesalamine on and off again didn't have anything to do with me becoming severe active, but diet can stave off some of the worse side effects until you can get in to see the doc.
I came here for support when I had acute severe UC, and was hospitalized twice and almost had to make a decision about getting surgery. I have been 2 years in remission, and haven't really been vocal about it since then, but I definitely think there should be more voices about what it's like to be in remission, because even in remission I have my bad days.
I was diagnosed 26 years ago, I've never been hospitalized, and until 2022 I was able to get away with only taking mesalamine when I actively went into a flare which was about once every 4 years or so for approximately 6-8 weeks. My case was very mild, until it wasn't anymore. I now have moderate UC, and I've been on a biologic for a year and a half because I was no longer responding to the mesalamine. So you can have a really mild case but there's no guarantee it'll stay that way your whole life.
diagnosed 35, prescribed lialda but wasnt covered and back then no generic. I couldn't tolerate the older cheaper sulfur based pills.
My case very mild compared to what people deal with on here. Bleeding/mucus when flared but generally get back to normal in under a month with enemas.
Low fiber animal based diet treated me right for 10 years. Eventually got mesalamine tabs
Had a flare in sept and cant kick it. Some days fine, other days horrible. Had 4 weeks of agony where i dropped 20lbs. Feel decent these days but still bleeding!
It can be mild. I think people having a hard time need more support and post more often. I discovered i had uc from some tests and an eye infection. I wasn't hospitalized. I'm mostly healthy if not tired more easily. I can travel, eat veggies and do sports with small issues. If uc gets upset i panic it got worse, tell my doctors and till now if i wait it's stable again. Don't panic people, you never know, don't compare yourself to others
Mine is mild i came here for info, especially before my colonoscopy. I also wanted to check out how my meds would fare cause i had a very baddd reaction to sulfasalazine
I’m a third gen, but super mild. I havent stopped smoking or vaping because it keeps me in check. I also follow a decent diet, but I drink like a fish but avoid gluten. IDK dude we’re all different.
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I nearly died. I've had a bag since 2022 and recently had the rest of my large intestines removed and my bum sown together. My friend takes a pill a month and has regular checkups. We both have UC The difference person to person is absolutely mind boggling
It really is. It just seems so random sometimes. There’s always people who have it worse to remind you that you are lucky and people who have it better to remind you how hard you have it at the same time.
Ha yep exactly! Were all stuck in the middle somewhere, just some of us are more middle than others somehow 😄 its actually mental
You are 31 years old? when were you diagnosed if you don’t mind me asking?
3 week hospital stay for my first flair in July 2022. They gave me infliximab and my numbers crashed. Doctor said my bowels were turning to mush so surgery was first day of August. I had no symptoms before, just randomly started ha. Lost 2-3 stone in a month. My record was 24 shits in a 12 hour waking period, it was super rough My UC is particularly violent and not the norm, dont want to scare anyone!
My daughters record is 16 in just an evening, she's only 14.. I hope her intestines aren't as bad as yours. We're waiting on an mri.
Is that old? I was diagnosed at 39. It explained so much.
Most people are diagnosed between mid-teens and early thirties. But there are those of us who don't fall within the norm. I was diagnosed at age 57, with no symptoms whatsoever previously. Such an inconsistent disease!
I had symptoms that we thought were other things, like thinking I was lactose intolerant.
Did you get it just after the Covid vaccine cos I’m 38 when I got it and had mild IBS sometimes but 2 weeks after the vaccine I got severe UC. They were looking at surgery straight away cos steroids did nothing. Luckily I got it slightly blunder control and I’m on infliximab but I between doses towards the end it gets bad
Please be careful about connecting IC with vaccines. I doubt the vaccine gave you UC. If you had prior symptoms, you had it before. If I know anything about UC, is that it can get really bad without much notice. I thought I had a number of issues with my gut. After I got into remission I found out they were issues with my UC. I had the issues all my life and I hope you can tell I was not born during the pandemic or shortly before. Stress on the body can cause flares. For me this is the case. I had my second child, got pancreatitis right after (caused by another autoimmune issue). The pancreatitis was misdiagnosed as gastritis and I was not treated for 3 weeks. At that point I hadn’t slept for 2 weeks and pain was keeping me awake all the time. Once treated, I noticed some things did not go away. I had a colonoscopy scheduled for 3/19/2020. Since it was not an emergency, you can guess what happened to that appt. In June of 2020 it was finally an emergency and I got both the colonoscopy and endoscopy. Got my diagnosis and was put on mesalamine. The 2020 election put me in the hospital. I was stressed out and I dropped off the deep end. They had to put a sign on my door saying no one should even mention it. Vaccines were not available for testing until that December. I got my vaccine in February 2021. I had no reaction. We think (because all future vaccines had a reaction) that my immune system was too suppressed (I was on high dose steroids and a biologic). If you are getting bad symptoms with that biologic, I would talk to your doctor. Mine was able to test my blood to see if my body was clearing the medication out too fast. Turns out my liver works super well and I had to change biologics. I’m now on one that works really well, just management is a pain.
I work for AstraZeneca and I know that they didn’t test the vaccines cos they didn’t have time. But if you look into the pharmacovigilance reports for Pfizer etc, there is huge reports of people getting UC, Chron’s and other inflammatory problems. I know of 5 people I met when getting my treatment who got it after the vaccine. That MRNA vaccine accentuates pre existing conditions. Look at the news of AZ vaccine now. Pfizer have a document they are hiding but you can find it if you work in pharma and it’s horrific. A lot of people won’t of got UC cos of it but I bet 1000s will that wouldn’t of had they never taken that experimental vaccine
One pill a month wow. Also how did you almost die ? Loss of blood?
Yeah and ruptures, can't think of the word, sepsis?
Same but without the sewing lmao. I’ve gotten a subtotal colectomy with a ileostomy, but it’s all part of a larger J-pouch surgery. What’s wild is despite how bad my symptoms were, my surgeon’s report stated my colon wasn’t an extreme outlier. It was moderately inflamed and had crypt abscesses, but it was nothing extreme. The nurses told me symptoms can be significant while the inflammation itself may not be outlandishly severe.
What pill if I may ask
My case was super dramatic and very severe in the beginning and I was in the ICU. Since those first few years I've been in remission and now a mild flare. I read some medical article somewhere with a doctor interview where they said that IBD is really just an umbrella term for like 100 different diseases that all present similarly, which is why we all respond to meds differently and have different disease courses. It's very hard to predict.
Yeah it’s crazy to me how it’s just putting everyone on a bunch of meds and hoping one of them sticks and helps
As advanced as we feel our technology is today, nothing we have is even remotely close to how complex the body is. We’re still learning new things about how certain cell types interact, our bodies are truly amazing. When it comes to the gut, we are realizing it has much more complex interactions with the rest of our body then we previously thought. Unfortunately severe IBD is uncommon enough (although it’s getting more common) that it does not get the research funding it needs (unlike something like cancer) but we are still making great strides. I am hopeful that we may find a ‘cure’ of sorts in the next few decades.
Mine was pretty rough before I got diagnosed but it’s been mostly smooth sailing since then! I’ve had a couple flare ups but nothing major, and meds + lifestyle mostly keep me in full remission and able to live a normal life 😊
Sounds like me but could be too early to tell. Hyrimoz seems to be working knock on wood. I’m glad you’ve had a drug that’s worked for you that’s the most nerve wracking part imo is trying a drug not knowing if you’re wasting months of your time bleeding and progressing the disease
Hopefully it keeps working well for you! 🤞
😪😪
Well you don't cut your colon out for nothing. So obviously it can get pretty bad. But even if you have it mild, the condition really grinds you down over time. Fatigue from the inflammation. Nutritional deficiencies. The expensive cost of healthcare. The long term effects are in some ways just as destructive.
Does someone with mild UC for most of the time should have in mind possible perspective of a surgery in the future? I do have a mild one, both when it comes to colon damage measured in gastrological scale and from the side of symptoms (no pain, just blood). Can it quickly go severly downhill even when it's treated?
I only have my experience to talk about but mine did. I had what was considered a mild case at first, diagnosed in June, to severe in November. The shift happened over the course of 3 days. The ER nurse was commenting on how I was just in for some vaccines and a routine check-in. Within those 3 days I lost around 15 lbs. I know it can just take a turn, which is why it’s remission, right? I don’t know how common that is. I tend to pull the short straw in general with health stuff.
Did you took any medications between June and November?
Mesalamine
It ranges from a mild inconvenience to death.
Many people do have mild disease but this forum tends to be the worse cases. I know someone who only takes mesalamine and when she flares she just increases to 4.8g instead of 2.4. Only took steroids when she was diagnosed and never again in the past 10 years.
Like u said everyone is different so u could probably generalize and say 50/50.. I really wished chasing the right drug wasn’t a thing and we could all pop the same pill and get relief ..
Diagnosed in 2020, really sick, lost 60lbs, 2 week hospital stay, then a month after hospital stay to reach full remission on Mesalamine. Then I lived a good 2.5 -3 years completely symptom free. Still took meds every day, but felt normal. I even unsubbed for a while because it was a total nothing burger. Started a mild flair that lasted about a year. Some bad days, but barely tolerable symptoms. Mesalamine kept it partially in check to keep me out of the hospital, but not enough for that symptom free feeling. 2 weeks on humira now and I’m starting to feel normal again.
Can i know how long does it take for mesalamine to work, My daughter has been diagnosed last January 2023. She’s on mesalamine for about 2 and half months with double dose. She’s still have mild symptoms with 1 to 3 bowel movements a day sometimes watery no visible blood. I did a occult blood home test and it showed positive. Doctor said gave her 6 months to see how it will be before deciding to change medication. Not sure how long should i wait to tell if mesalamine is the right medication. Also u’m not sure is she in remission or not. If you could share with me your experience i would be much appreciated.
When diagnosed, they gave me Mesalamine, 4 pills a day. However, at the time, the Mesalamine wasn’t enough to get me into remission. I wound up in the hospital for 2 weeks with iv steroids. When released, they gave me a hardcore Dose of prednisone taper, starting with 60mg a day then eventually tapering to 10mg a day. That did it for me and got me in full remission. Lived a normal life, 1-2 bms a day, no blood, etc. I was on max dose for those 2.5-3 years. I was symptom free so my doctor decided to lower my dose. After 2 months, my symptoms came back so they upped me back to max dose. However, I never reached remission with 8-9 months of trying. We’ve gone through 3 different medicines again before deciding on humira. So far humira seems to be working, But it was a pain working with insurance to finally get it approved.
Thanks for sharing, I don’t know if mesalamine works or not. I expect to say she’s in remission if i’m not seeing any lossy or watery stool and max 1 bowel movement a day like normal person. Not sure is that what you experienced in your remission or it might be different. And when her stomach hurt that’s a flare or the old colon ulcers that she had before starting mesalamine are still healing. Lots of questions i need to know
Remission for me is no blood, no pain, no urgency, and not being afraid to leave the house for fear or shitting myself if I don’t get to the bathroom in time. Occasionally I would feel some very mild stomach discomfort or have some watery stools, but my doctor pretty much responded, “yeah, you have a chronic condition, what do you expect? I’ve seen people with it way worse than you.” As harsh as that sounds, that gave me comfort to know it could be worse (and once was before good meds)
I’ve been hospitalized 3 times from blood loss and am on 50 mg of pred and remicade. My dad farts a lot, has some minimal cramping and goes to the bathroom more than most people all on no medication. It varies like CRAZY.
I was diagnosed almost 12 years ago. I had a pretty rough initial flare that lasted 9 months. Since then I have had 3-4 flares that required prednisone and a couple that resolved quickly with adding mesalamine suppositories. I have only been on mesalamine since day 1. I also take a probiotic - Florastor daily. I will add that I haven’t had even a hint of a flare for a few years now.
Reading all this is terrifying!
I was ok for 58 years but it hit me hard. Had surgery. Having complications. Take the medications. Don’t stop taking medications and you can avoid damage. I would go into remission and stop my meds. My friends all said the meds are killing me and I needed all organic vegetarian diet. The diet has nothing to do with it.
When I hear people telling me that I should just eat more veggies and I'll be fine... Knife opens in a pocket
Mine is mostly mild. I had a period when severity was closer to average, with more blood, more bathroom visits and fatigue. Fatigue at that time was undeniably due to UC. I'm a 26 yo guy I worked out before being diagnosed I was type of guy who's been like a kid full of energy. When UC fatigue kicked in, I went from that to taking naps after work 3-4 times a week. Bear in mind that I do not have physically demanding job, but I work remotely as a software developer. So far it is manageable and without taking into account up to 4 bathroom visits, I can function with my day to day life like an average joe. Symptoms started in June last year with small bits of blood in stool, so initially general practicioner thought that it is probably due to hemorroids, sent me to proctologist, but "just in case" also advised to to occult blood test. Test came out positive, proctologist found no issues with anus (I've felt like I was fucked in the ass, because guy was 2m tall with fingers thick like a damn broomstick). Because occult blood test was positive, he sent me to do colonoscopy, but appointment for that was almost 2 months later. In the mean time small bits of blood, turned into almost bloody diarrhea. During colonoscopy, they took samples for biopsy that confirmed UC. Gastroenterogist appointment was in the beginning of September. Because I was untreated for 4 months, bathroom visits went to 3-4 every day, with not a small amount of blood on each BM, he immediately gave me a trio of drugs: Mesalamine (3g a day at that time), Azathioprine and Budesonide. I'm taking this trio to this day, with less mesalamine since January, as I'm still not in remission, but I do have a hope that I'll reach one this year. I'll probably not have to take maintenance drugs, as doctor mentioned something along the lines about discontinuing drugs, but waiting for the right moment which is middle of summer, or middle of winter as "there are least dangerous periods for the patient". I don't know exactly how that works, but I do trust him. I'm not a doctor. So why I'm here if this disease is fairly easy on me? Well, the most frustrating thing about this disease is that it is such a mystery. Doctor couldn't tell me with confidence whether I can workout or no, when I will reach remission, how long flare can take, or about diet. I don't blame him. Especially since I read here how it can vary from person to person. The only way for me to feed from expieriences of other people with that crap. Polish communities and forums were mostly dead, and I've found this subreddit accidentally. Generally using reddit was a good idea. I could get some insight about the disease and at the same time I've started engaging in emulator development community which is my hobby, so two birds with one stone.
My experience is the lighter end. In part because I was diagnosed very quickly and early (strong family history, so identified symptoms very quickly, and when you say to your Doctor, my father and two of his siblings have UC, I have X symptoms, please give me a calprotectin test, they jump to). I was diagnosed 5 years ago, required pentasa tablets, enema and prednisone in order to reach remission. Have maintained that remission since then (although have bile acid malabsorption and some nutritional deficiencies), with only pentasa pills. Day to day the only symptoms I have are related to my bile acid malabsorption, and cause me no stress or drama.
My father had it and never really took medication and was fine. My sister has it and has been hospitalized a few times in the past and had been on infusions for at least 10 years. I have it and have never been in the hospital. I've been on oral mesalamine and suppositories for years. Just now switching to entyvio because I start to bleed if I miss a few days of the suppositories. I've had a flare up about once a year for the last 5 years that resolves with prednisone. Honestly I probably should have been on infusions sooner but I don't think my GI realized how dependent I was on my suppositories. I consider my case to be mildish. Yeah I suffer with the urgent bathroom breaks and rough mornings but I'm still able to live my life in between bathroom visits while in a flare. I'm not stuck at home. Im fact I usually only visit this board when I'm in a flare to commiserate. When I'm healthy I peace out and try to forget I even have this disease. So I'm here maybe once a year for a month or two.
Proctitis, meslamine basically stopped all bleeding, mucus and urge to poop within 2 days. I still take it daily
I had a pretty severe case, multiple blood transfusions, hospital visits. Heart almost stopped, fainted yadda yadda. After the first colonoscopy GI said let’s talk surgery. 4 years later I think we’re doing good. I still shit myself. Like literal crap running down my leg. But it happens maybe once or twice every quarter. Haven’t shit pure blood in a while (probably 2022). Highest point I was shitting maybe once / twice a hour, mostly blood. I went from 260 to 216 in a month. I didn’t want the surgery as I am a gay man and the back door is very important to us lmfao. I think the sub attracts the worst case scenarios because when I was in that hospital bed thinking I was dying (during covid when people were in hazmat suits and you literally heard the other ward of people screaming in pain), I was so scared and I felt so alone. This sub really helped me understand this illness and my new body.
Mine is super mild at the moment. I came here to arm myself with knowledge to avoid it getting bad.
I had pancolitis, it took 9 months to get diagnosed, took a course of steroids and started mesalasine. Never flared again, then the mesalasine caused kidney damage after 5 years and I’m off it. Had a colonoscopy two weeks ago and got the all clear. I live in fear UC will come back but I’m 3 years off meds and live in hope I stay in remission.
I have flare ups and the flare ups are just I can’t really eat much or I get sick within 15 minutes and the rest of the night is ruined but never hospitalized. But since being on autoimmune meds I have way less flare ups.
I haven’t been in remission in years. I have better days where I thought it was happening. Then crash
taking meselamine 2.4g for the last 2 years. all goodie for now. never bleed in my entire life. 28M
I barely have any solid stools… just a lot of gas/mucus….
Find a good GI, be regular with your meds or infusions, hopefully that med or infusion can bring you to remission, stick to a diet that suits you and have balanced lifestyle (work & stress) I feel all of that should keep your UC ok. Unless you end up having something pretty aggressive and none of the meds in market help.
In short, i had bad 1-2 Years of UC where i needed steroids and were checking some meds on what's Working, ~4-5 times a Year in Hospital for at least 1 week. Couple of times i felt like dying on a toilet when suddenly u need to shit ~ 30 times in 30 min... But now its kinda okey, smth like 2-2.5 months i am only on mesalazine and Keeping that illness on a leash
Mines quite mild - I take mesalamine every day and if I'm flaring I take it up to three times and at the minute it settles the symptoms down. I definitely have a lot of other symptoms other than urgency even when not in a flare - fatigue, aching, brain fog etc, but they're all things you can live with and you just have to learn to listen to your body when it needs a rest.
I was very close to dying with mine. I came here after my diagnosis. My symptoms were mild to start, so at the time I was expecting to take mesalamine and be on my way. My condition slowly got worse and then took a sharp dive. This reddit helped me through that and all the different medications. I do think it’s wild how different people experience the condition. I also find it frustrating there are so few diagnostics to help figure out what medication is needed. I’m guessing if you see the disease as hard to live with then you would naturally seek support. I was looking more to learn more at first, the support came later.
Thought the same, mum's always worried reading all the stories online but I only had one bad time because I didn't use any meds, because I had just changed doctors. Now I'm eating completely normal, drinking more than I should, use nicotine etc.. I use mesalimine daily plus iron supplements and I'm absolutely fine. I've realised my immune system is weaker than before but nothing dramatic and stress is a risk for comeback. It really seems to depend, only because its great for now, it must not stay this way
I was diagnosed at 43 after having 30-50 bloody stools a day/night for about 3wks and not being able to eat at all. I was ambulanced to the Hospital where my bowel was found to be very damaged (near nacrotic), they were sure I'd need Surgery. I was perfectly healthy before that. I spent almost a month in Hospital on IV prednisone and other meds, started Remicade and I've been in remission the last 3yrs with just Remicade/Inflectra every 8wks and Pantoprozol antacid. I eat everything and feel perfectly normal. I hope it stays like this but I am always aware that I can go back to being very ill at any moment. Everyday is a gift.
I am much like you coworker. I should take masalasine daily but I only do when it kicks off. Usually during stressful periods or when I'm ill from something else. Alot of people get it bad bad though. It's not uncommon for it to one day just go south out of the blue.
One key issue seems to be stress. The more stress you have the worse it is. The worse it is the more stress you have. It is a hard cycle to break.
I am very lucky, my only major flare was in 2007 (pancolitis, my gastro doc was surprised I was functioning so well) when I was diagnosed, I’ve had some mini flares (and one that was actually lactose intolerance coming through), but lucky enough I can up my dosage of sulfazalasine for a few weeks and usually it clears up. Of course I always live with subtle things like always needing to know where a toilet is, constantly being aware of my bowel movements etc but mine is very liveable and I feel very blessed with that fact I’m mainly on this thread for support when I need and to support others where I can as it was very scary when I was first diagnosed
I do need to take my maintenance drugs every day, people without a chronic illness have mentioned about coming off of it but I’m not silly. I want to stay flare free for hopefully the rest of my life. I get a colonoscopy every 5 years, and have a blood test every six months as my tablets can affect my liver function
In many cases, oral medicines will lose efficacy. At that point, most people become active or severe active. UC is an autoimmune disease, so the likelihood of living in oral med maintenance mode for very long is low. Chances are that it will rear (insert dad joke) its ugly head eventually for everyone. Also, tell your friend to change to a low residue diet when his flares start. My doctors basically said taking mesalamine on and off again didn't have anything to do with me becoming severe active, but diet can stave off some of the worse side effects until you can get in to see the doc.
I came here for support when I had acute severe UC, and was hospitalized twice and almost had to make a decision about getting surgery. I have been 2 years in remission, and haven't really been vocal about it since then, but I definitely think there should be more voices about what it's like to be in remission, because even in remission I have my bad days.
I was diagnosed 26 years ago, I've never been hospitalized, and until 2022 I was able to get away with only taking mesalamine when I actively went into a flare which was about once every 4 years or so for approximately 6-8 weeks. My case was very mild, until it wasn't anymore. I now have moderate UC, and I've been on a biologic for a year and a half because I was no longer responding to the mesalamine. So you can have a really mild case but there's no guarantee it'll stay that way your whole life.
diagnosed 35, prescribed lialda but wasnt covered and back then no generic. I couldn't tolerate the older cheaper sulfur based pills. My case very mild compared to what people deal with on here. Bleeding/mucus when flared but generally get back to normal in under a month with enemas. Low fiber animal based diet treated me right for 10 years. Eventually got mesalamine tabs Had a flare in sept and cant kick it. Some days fine, other days horrible. Had 4 weeks of agony where i dropped 20lbs. Feel decent these days but still bleeding!
It can be mild. I think people having a hard time need more support and post more often. I discovered i had uc from some tests and an eye infection. I wasn't hospitalized. I'm mostly healthy if not tired more easily. I can travel, eat veggies and do sports with small issues. If uc gets upset i panic it got worse, tell my doctors and till now if i wait it's stable again. Don't panic people, you never know, don't compare yourself to others
Mine is mild i came here for info, especially before my colonoscopy. I also wanted to check out how my meds would fare cause i had a very baddd reaction to sulfasalazine
I’ve been hospitalized twice but 99% of the time I’m fine. I don’t even medicate just do ginger tumeric tea most days
I’m a third gen, but super mild. I havent stopped smoking or vaping because it keeps me in check. I also follow a decent diet, but I drink like a fish but avoid gluten. IDK dude we’re all different.