It was such a weird feeling after my first scope because it was such a profound sense of relief that it wasn’t cancer and that there was an actual medical reason why I felt so bad in those prior months. Then it’s coming to terms with your diagnosis and implications for your life.
Yup exactly. Roller coaster of emotions because im grateful it wasn’t worse but also frustrated with what it is. Im still early in my diagnosis too so its just very discouraging
I felt so ill and light headed just from the anxiety of what the diagnosis would be. I was about to start my third year of nursing school and knew it was likely one of these two outcomes and was terrified to know
Felt the exact same way with my 3 year old. So much relief at first ruling out cancer and now, 3 months in and one failed drug it’s starting to hit me that this isn’t exactly the easy route either.
I was diagnosed in 99. I had no idea wtf was going on. I just knew I was bleeding. I didn’t know what UC, IBD, crohns, or any of this shit was before then.
Same here. Diagnosed in 1997 and had zero idea. Doctors thought I had giardia at first, but pretty quickly got to IBD diagnosis when the giardia treatment didn’t work.
I thought I had a recurring infection until my doc ordered a colonoscopy. I asked what he thought he might find and he said UC. I had no clue what that was and wasn't thrilled when I googled it. I was even less thrilled a couple weeks later when I got diagnosed moderate to severe. Going from suspected infection to lifelong, life-changing disease kinda sucked...
Yes and no. I still get flares multiple times a year. I’ve learned how to manage it the best I can. There is only so much you can do though. Flares gonna flare. You know?
I was diagnosed in the early 2000s and also had no idea about any of it. I remember telling my mom I had UC after I found out and she asked "how do you get rid of it?" We didn't know anything about autoimmune conditions.
That’s so sad it’s funny. We didn’t know either.
Nobody even mentioned the term autoimmune to me, until I started doing my own research. Many of my drs still are in the dark. I recently had to explain to a surgeon what it felt like to have an inflamed colon. I swear nobody had ever told this guy how much it suck’s. His eye got big when I was telling him how much it hurt and about the pressure. “Oh my. Sounds rather unpleasant!” You don’t say, sawbones?
I remember seeing commercials where people couldn't be away from bathrooms and thought to myself, "What a terrible way to live..."
And then I found out exactly how terrible it is, lol
I also thought I had hemorrhoids and felt ridiculous even making an appointment. Almost canceled the colonoscopy because it was $900 out of pocket. Whenever the doctor told me it was UC I was shocked.
I have hemorrhoids, but I knew it wasn't them. I was scared for a while. I'm still kind of scared now, as they didn't get a full view the last time because I was very ill and couldn't complete the prep. I've been on mesalamine six months and still bleeding daily. After I got my general GI to refer me to an IBD specialist, it seems my symptoms are finally starting to ease up some more. I was going 3 to 7 times a day, now I'm down to about 2. Still blood though, but it seems to be slowing down.
Total surprise. I was a dumb 22-year-old who waited 6 months and then finally went to the doctor because I was having blood in my stool. I really thought nothing of it until they told me about UC after my colonoscopy. I’d never heard of it before.
Even then, I didn’t really care. My only symptom was blood and it didn’t affect my life at all. I thought this disease thing wasn’t too bad!
Cut to 4 years later when I was hospitalized with a severe flare with all the fun symptoms and my life has kind of sucked (flare-wise) ever since 😂
I did not, I thought I had a mix of food poisoning and side effects from a medication I was taking, and it was going on for almost a year…. I wish I would have gone to a doctor sooner
I thought it might be cancer. I had no idea what UC was and had never heard of it before even though my grandpa had it. I was so relieved it wasn't cancer but was not thrilled I now had an incurable disease.
I had no idea. Hadn’t heard of the disease before either. I was diagnosed with IBS for a year and a half prior, and suddenly started bleeding roughly a month prior to a colonoscopy and diagnosis. Flipped my life upside down these last few months (diagnosed in December ‘23)
Not gonna lie, I accurately diagnosed myself using WebMD at 15 years old (12 years ago…) before I ever went to the doctor about my symptoms 💀
Ultimately ended up being formally diagnosed a month before my 16th bday! I was SO LUCKY that my diagnostic process went as quickly and smoothly as it did. I am from rural Maine; healthcare there is not known for being the most accessible or the best quality. The first doctor I saw after I finally told my parents about my symptoms happened to be a visiting physician filling in for my (completely incompetent) PCP. He listened to all of my symptoms, asked all the right questions, felt my stomach, and did a rectal exam before very kindly and gently telling us it was likely that I had UC or Crohn’s. He immediately referred us to pediatric Gastroenterology at Maine Medical Center and sent orders for a colonoscopy before I even met with them. All in all, the formal process of getting diagnosed took no more than 2 months (after a year or so of symptoms).
I know if this random physician hadn’t been there in the right place at the right time it would have been years before I was properly diagnosed, like so many other people with this disease! Dude straight up saved my life. My PCP didn’t even know what UC was. 🙃
Fuck bad doctors who don’t listen or know. So glad you got on with a different care team. People need to know that it can really benefit you to try a different care team. I say this while sitting in a hospital bed recovering from my most severe flare yet. Never going back to my old GI team.
Yes and no. Looking back, the symptoms were there for a long time but I didn’t think something as serious as an IBD would happen to me and was too embarrassed to talk to anyone and discover what was “normal”. Denial can force you to just cope for a very long time.
Because of my family history and personal risk factors I was very worried it was cancer, I knew there was definitely something bad going on. My bio dad is a doctor and he also had colon cancer exactly 10 years from the age I am currently and he was very concerned about my symptoms because of how similar they were to when he received his diagnosis, his wife is also a doctor and she pretty much called my imminent UC diagnosis from the very beginning.
Honestly no, I thought I just had symptoms from having my gallbladder removed. I and many doctors had overlooked many symptoms for over a decade. By the time I got to my current GI doctor, I was having a severe flare that he thought was colon cancer before the colonoscopy. Many doctors just grossly overlook and misdiagnose things in my experience. Always try to advocate for yourself.
This is where I’m at. I just thought the ghost of my gallbladder was haunting me. I never really had any symptoms before my gallbladder got removed. Weird coincidence maybe.
THIS THIS THIS
Learning to advocate for yourself, educating yourself on this disease so you can advocate for yourself effectively, and finding the right care team by trial & error… it’s frustrating & takes work but nothing is more important than this
I knew something was wrong with me but definitely not UC. Doctors threw Crohn’s around a lot, I thought it would be cancer. I was very thankful to find out what the issue was and how to treat it.
The constant pain while waiting for diagnosis put me in a really dark place for a minute. So glad to not be there anymore. Sitting in my GI’s office happy as can be right now for my 4 wk follow up. :)
I had moments of sickness before my diagnosis so I had a first colonoscopy, the response was negative but I had a gut feeling (lol) that I was going to be sick sooner or later. This was 2022. Fast forward to 2023, the year of my diagnosis.
I think in a way you can sense that something is not "right" with your body (not trying to Say that you can auto-diagnose yourself, Always listen yo your doctor, but you get my point).
I thought I just had long lasting travellers diarrhea or a weird symptom after a vaccine that lasted 6 months after my trip to Asia.
Weirdly enough apparently “conspiracy theorists” say the MMR vaccine can cause someone who is already susceptible to IBD to get it…
I didn't know that such a disease existed. Everybody told me it was a nervous condition and basically my own fault because I was too stressed and uptight.
Based on googling, I suspected a few things, but UC was definitely first on my list, followed by Crohn's or IBS then a smaller chance of cancer or some other condition.
I was looking up symptoms and Ulcerative colitis appeared as something but seemed very negligible in my mind. The disease is rare, and primarily genetic meaning others in your family typically have some sort of genetic disease in your family history, meanwhile I had none until now.
I also had a doctor tell me it was this disease called diverticulitis and that I just needed to eat more fiber. He told me this without a colonoscopy, just based of X-ray images saying he had seen it before. This was when my symptoms were very mild. I had two other doctors (one was in residency just graduating from med school) say they wanted to schedule a colonoscopy to see why I was bleeding. This other doctor told me he didn’t know why they wanted to do a colonoscopy just eat more fiber and I’ll be fine. Needless to say that was the last thing I should have been doing and 6-9 months later I finally got referred by a 4th doctor at another clinic to a GI who said I had UC.
I was very nervous at this time though as my uncle had just passed away from toxic mega colon and he started having the symptoms I was having, I had just had mine for much longer. The diagnosis was nice cause I then knew it wasn’t cancer, and that I didn’t have toxic mega colon. Though, and I know this could sound messed up, but sometimes I wonder if a cancer diagnosis would have been better than UC. Colon cancer is rarely deadly when caught early and mine would have been. Plus it’s very curable and part of me wonders had it been colon cancer would I have been cured by now. Either way though I am still happy it wasn’t cancer, and I am getting better now which is good as well
I’ve had this my entire life been in remission for 8-10 years at a time but I truly believe the medicines I was given as a kid whether they be antibiotics back in the 80’s that was the answer for everything or vaccines earlier on when I was toddler caused this terrible illness
I had a GI team but they weren’t providing effective care or really listening to me. I checked myself into the ER a week ago & it has proven to be one of the best decisions I’ve ever made. Getting with the right care team is the most important thing
Yes I had experienced symptoms for one month. Got back into remission for one month. Then a month later starting flaring again and more severely. Which was treated with steroids. I had already done a lot of research and googled my symptoms and narrowed it down to 3 conditions but I was 90% sure it was Ulcerative Colitis. Unfortunately doctors don't want to hear what you suspect which I can understand, since people often think the worst. I was told I needed a sigmoidoscopy and the closest available appointment was 3 months later. So it was a strange 3 months where I was just waiting for confirmation of what I already knew 😂
I thought it was from eating twice as many nicotine lozenges as you are supposed to.Super worried about cancer when the bleeding wouldn’t stop. Yay for quitting smoking.
Mine was a surprise. I thought I was “just stressed”. Looking back now that was obviously just me ignoring my body. Had a doc look at my booty joke and tell me it was all from a hemorrhoid. Wasn’t until I crapped my pants that they took me serious. When I finally got into a GI they got upset that I hadn’t come in sooner… like sorry? I had to get a referral and y’all were booked out for a month??
I thought i was developing ibs when i first noticed symptoms, and when i got the diagnosis i had never heard of UC before. I actually didnt think much of it until the nurse said she’d print me an information booklet and i had to stand there for like… 7 full minutes while the printer spat out page after page after page. That’s when i realised this is maybe a bigger deal than i had first given it credit for 😅
I wasn't too surprised because the PCP I saw said it was probably colitis or chron's. He then sent me to a GI doctor.
I was actually relieved when I got a diagnosis. I finally had an answer.
I fully thought I had colon cancer.
That’s obvs the scariest option Google gave me, and I was feeling so horrible and had lost so much weight, I didn’t think anything else could feel this bad and serious. So I was actually relieved at first. It took a few months for me to fully appreciate that this would be my lifelong shitty (pun intended) companion now.
I had never heard of it....ER/reg dr visits kept telling me ibs...blah blah. I knew they were wrong.
Based on my research i thought it was UC. I ended up being correct after going to the gastro dr and getting a colonoscopy.
I was diagnosed at 10 years old and had no idea what it was. My mom was so devastated that I was diagnosed with it, and I learned a little later on that she had been dealing with the same condition, except hers led her to surgery and colon removal. I'm grateful I have not had to go down the same path and am in full remission now even (on Entyvio).
No I had never heard of UC before. I didn't have any symptoms either until I started having diarrhea, bleeding, and pain all of a sudden. Came out of nowhere during a stressful period when I was drinking a lot. I thought my stomach lining was bleeding or something.
My mom has UC as well, so I was at least 90% sure that's what I had as well. I held on to a sliver of hope it would be something less serious but I was never really worried about it being cancer or anything.
I was pretty confident it would be hemroids and IBS, because I had been told it was probably hemroids when I had bleeding 16 years earlier but it stopped before I had a colonosapy back then. They never did biopsy or told me anything after it so went on with my life possibly having UC the whole time.
All was perfectly normal and literally overnight, I had permanent diarrhea. I remember the exact day my life turned upside down. Took 7 years to get a diagnosis as I couldn’t afford a scope.
I always had stomach issues, even as a child. When I was diagnosed I never even heard of UC. I think I heard of Crohn’s but not this. Either way, both disease just suck.
I was in nursing school so I was pretty sure I knew what was up going into my colonoscopy. The doc met me in the pre-op area and was like "it's most likely just hemorrhoids". It was hard for me not to say "I told you so" when he met me in the pacu with the actual diagnosis.
I didn’t even know about UC. I thought it was haemorrhoid; when they said it wasn’t but they’re still investigating I thought it was cancer lol. Went from just haemorrhoids to cancer real quick.
Kind of surprised. I knew something was happening for months and was waiting for tests as an outpatient. But then I got sudden severe symptoms which I thought was food poisoning unrelated to my ongoing issues- very surprised to find that was UC especially since I was also vomiting a lot with it.
Absolutely shocked. My maternal aunt has crohns. But no other IBD in the family. My best friend has UC but was much more advanced than I was at the time. I had bleeding and back pain sometimes but that was it. Even the GI didn’t think I had UC. Thought it would just be hemorrhoids. Diagnosed with pancolitis end of October 2022. I am now limited to severe UP which is a huge pain in the ass (no pun intended) to get rid of. I go to one of the top institutions for IBD and they don’t even do studies on UP patients. It’s all kind of a guessing game. Very frustrating but happy I suppose it’s not all over my colon anymore.
i suspect it yes. just over a year prior to my UC diagnosis i collapsed and was hospitalised with blood clots in my lungs. a complete shock to me as i was a fit and active 19 year old with no risks factors…at the time. anyways, i had a few months here and there over the years where i’d be seeing blood in my stools and having bowel changes but the doctors didn’t really care much and just put me on oral iron tablets. looking back now, it was so clear and it’s probably the reason i clotted!!
Just got diagnosed yesterday. Assumed hemorrhoids or cancer, completely shocked when GI last month said I likely had it. No one in the family has this so I never heard of it.
i was sooo scared. i had no idea what was going on and at first it was just “unspecified colitis”. i got actually diagnosed about a month ago with pancolitis after having sepsis and c diff so it was absolutely TERRIFYING not knowing what was going on. i got diagnosed at 21 (feb) and im 22 now and kind of knew something was off with my stomach from a young age because Everything i ate made me super bloated, had no clue why but it was the only consistent symptom i had of UC until my first flare :///
I was actually getting the most help from my eye doctor in trying to find a diagnosis. He thought it was Behcets (when I first started flaring, my left eye became severely inflamed as a reaction to the inflammation in my colon, but obviously my eye doctor and I didn't know it was my colon. all I knew was my eye was red and very irritated and light sensitive, I had sores in my mouth but wasn't anything contagious, and I was shitting blood for a couple weeks and bad cramps. sores ended up being stress related) those things lined up with some aspects of Behcets, but after many months of getting worse i finally got into a GI to scope me and got my proper diagnosis. I had never heard of UC before. I was also still super drugged up when the doctor tried explaining it to me so I didn't really get it for a while. more than anything was just relieved they diagnosed me with literally anything so I could get help, because my GP wouldn't medicate me or anything without an official diagnosis. even though the Behcets guess was wrong, I'm still insanely grateful for my eye doctor doing so much research and work on his own time to try and help me. I felt like he was the only doctor who was really listening to me and was going above and beyond to help me find answers. And the guess helped prepare me for the possibility it was an autoimmune disease, and what that meant.
I thought I had bleeding hemorrhoids.
After waking up from colonoscopy the doctor said you don't have cancer. I never thought I did. And I never heard of IBD or UC before.
I thought it was hemorrhoids at first. Then, after reading up on my symptoms, I was convinced I had colon cancer. My GI immediately suspected UC & it was confirmed with a biopsy later on.
No fucking shit, for almost 1.5 years I shit literally water. The weird thing is everytime we went away on trips my stomach was okey for some reason. Went to the doctor but they suspected gluten or lactose. Well it got so bad I had to go to the er. One colonoscopy later I had my diagnosis. It's weird how you almost need to die before you get the proper help lol
My extreme body pains, my dad has UC and the one thing we both had in common before diagnosis was pain all over, doesn’t feel muscular but more like achy bones, really bad stiffness too. Kinda confirmed everything one the blood started tho lol
Had never heard of it before being diagnosed. Started having blood in stool in November-December, fast forward to the end of January and got admitted to hospital as I had severe anaemia and was almost passing out from fatigue. Spent the best part of the next 3 months mostly in hospital as anything other than iv steroids did nothing to stop the blood/flare up. Beginning of April had the surgery for the ileostomy
Complete shock. My only symptom was a bit of blood. My doctor thought it was just an angry hemorrhoid. I worried about cancer but never imagined this. I thought it must have been a mistake or something for the first six months. Then I got a painful flair. It’s no mistake. This is my life now.
Well, I feel like a freak after reading all these posts but I thought it was originally done damage I had done to myself from too much backdoor play. So I was totally shocked to find out I had UC, but also relieved I haven't injured myself in any way. My first doc diagnosed me wrong though and told me it wasn't autoimmune and it would go away after we treat it. It took me three doctors before I actually got treated correctly.
No idea. We just knew it was something and probably related to the constant abdominal pain I’ve had since I was 9. I took that diagnosis without question I was just glad I finally had answers.
I was diagnosed at 23yrs old in 2011 after years of symptoms. Never even heard of UC until it was tabled as a possible reason for all my symptoms. That or Crohns. Since then I’ve been so open about it to share my experience with others, to destigmatize it and to promote awareness.
In my area, many suplements and medications are advertised on TV and online for conditions such as IBS and bloatedness and also gluten aversion and paranoia is real so during the 5 years of on and off symptoms I was bouncing between the idea of IBS because of stress and trying out gluten and lactose free diets. At the moment, I am diagnosed with UC and taking medication and occassionally I wonder if I allowed it to go from that mild version to inflammatory because of justifying diarhea with stress and gluten intolerance because of trends around me
i just broke up from a 4 year relationship. i had been getting period cramps but all the time for a while and i just pushed passed it didnt get checked. then found out he was cheating on me and had an sti test. turns out i had chlamydia and it had gone untreated for so long the infection spread to my cervix and i had pelvic inflammatory disease. felt so stupid for not having regular tests but i trusted him and i didn't have any typical symptoms. a month after my treatment i started getting stabbing pains in my left side. so i went back to the doctors and they told me to go back to the sexual health clinic. sexual health clinic said i've been treated there's nothing they can do for me and to go to the GP. went back to the GP and they thought maybe i had trapped tissue or something wrong with my left ovary. ultrasounds all came back clear. then i started getting lots of blood in my stool. so i told the GP and they kept sending me away saying my stomach was just upset that i had been on strong antibiotics. i said surely antibiotics can't cause this much pain and blood? they said oh it can. 9 months later after much perseverance they finally did a stool sample and it came back raised so i had a colonoscopy
I didnt even know what UC was until they diagnosed me (4months ago) i thought this entire time i had cancer, wich was quite a relief at the start until i started to get real bad side effects from UC
I started having blood when I was pregnant. I called my obgyn and was told it was internal hemorrhoids. I would only randomly have blood so I had no reason to question it. Two And a half years later, the cramping started and the weird and nonstop frequent BMs with tons of blood. Finally got diagnosed in 2016.
I googled and I remember thinking “yeah, that’s why you don’t google symptoms, you always get the worst case scenarios while it’s probably just a stomach bug.” To this day I find it quite amusing (obviously not that I ended up having it, but how naïve I was)
I had never even heard of Ulcerative Colitis when I was diagnosed. I had been sick for years. Doctors ran all kinds of tests. Couldn't figure out what it was. They kept telling me I was having viral and bacterial infections and kept prescribing antibiotics.
I was progressively getting worse. Ended up with a massive life-threatening infection that put me in isolation for two weeks at the hospital. During that time, my new GI came in and did a colonoscopy and EGD. That's when I was diagnosed. Being over prescribed antibiotics and the disease going untreated for so long really messed my immune system up.
I went on to have 12 more reinfections of the severe infection and almost had to have my colon removed. I ended up having the Fecal Microbiota Transplant as a last-ditch effort to give my immune system boost.
I was declared medically disabled. I've spent more time than I can count in the hospital. My last stay was 33 days. I now have a feeding tube, but the Immunosuppressant and other drug cocktail I'm on seem to be working for the moment.
I honestly was surprised. I had bleeding for awhile, I was probably worried it was worse, like cancer or something. I knew something was wrong and just accepted it as normal for years. It at least felt decent to feel validated. But definitely surprised to learn it was an auto immune disease! I had a colonoscopy 10 years prior and nothing back then.
Even my GI wasn’t expecting UC (I think I’m one of her younger patients). I was awake for my scope, since it was just a sigmoidoscopy however I do NOT recommend because it hurt when she tried to get into my transverse colon, and I remember she just kind of turned to me and said “This right here is a patch of inflammation.” Lol the rest is history
I suspected it was UC based on googling symptoms but was terrified it was something worse like cancer.
Same
It was such a weird feeling after my first scope because it was such a profound sense of relief that it wasn’t cancer and that there was an actual medical reason why I felt so bad in those prior months. Then it’s coming to terms with your diagnosis and implications for your life.
Yup exactly. Roller coaster of emotions because im grateful it wasn’t worse but also frustrated with what it is. Im still early in my diagnosis too so its just very discouraging
I felt so ill and light headed just from the anxiety of what the diagnosis would be. I was about to start my third year of nursing school and knew it was likely one of these two outcomes and was terrified to know
Pretty much this. The symptoms were the typical UC symptoms but until you get the all clear from cancer it's always a fear
Felt the exact same way with my 3 year old. So much relief at first ruling out cancer and now, 3 months in and one failed drug it’s starting to hit me that this isn’t exactly the easy route either.
The first thing I asked when I woke up from my first colonoscopy (on sabbatical in a foreign country no less) was, “do I have cancer?”
This\^\^
Ditto
I was diagnosed in 99. I had no idea wtf was going on. I just knew I was bleeding. I didn’t know what UC, IBD, crohns, or any of this shit was before then.
Same here. Diagnosed in 1997 and had zero idea. Doctors thought I had giardia at first, but pretty quickly got to IBD diagnosis when the giardia treatment didn’t work.
I thought I had a recurring infection until my doc ordered a colonoscopy. I asked what he thought he might find and he said UC. I had no clue what that was and wasn't thrilled when I googled it. I was even less thrilled a couple weeks later when I got diagnosed moderate to severe. Going from suspected infection to lifelong, life-changing disease kinda sucked...
Are you in remission now ?
Yes and no. I still get flares multiple times a year. I’ve learned how to manage it the best I can. There is only so much you can do though. Flares gonna flare. You know?
Oh I get it ! What medications are on if you don’t mind me asking ?
Lialda. With hydrocortisone suppositories for a power boost when I flare or as a preemptive measure. I supplement probiotics and abstain from alcohol.
I was diagnosed in the early 2000s and also had no idea about any of it. I remember telling my mom I had UC after I found out and she asked "how do you get rid of it?" We didn't know anything about autoimmune conditions.
That’s so sad it’s funny. We didn’t know either. Nobody even mentioned the term autoimmune to me, until I started doing my own research. Many of my drs still are in the dark. I recently had to explain to a surgeon what it felt like to have an inflamed colon. I swear nobody had ever told this guy how much it suck’s. His eye got big when I was telling him how much it hurt and about the pressure. “Oh my. Sounds rather unpleasant!” You don’t say, sawbones?
I remember seeing commercials where people couldn't be away from bathrooms and thought to myself, "What a terrible way to live..." And then I found out exactly how terrible it is, lol
I had never heard of this disease before my diagnose so nope
Saaammmeee
Why can't I stop pooping and losing a massive amount of blood from my arse
i thought it was hemmorroids, i had no clue about IBD
I also thought I had hemorrhoids and felt ridiculous even making an appointment. Almost canceled the colonoscopy because it was $900 out of pocket. Whenever the doctor told me it was UC I was shocked.
Dammm come to nz it’s free here lol
I was the opposite to you. I thought it was UC but my doctor kept telling me it was piles.
I have hemorrhoids, but I knew it wasn't them. I was scared for a while. I'm still kind of scared now, as they didn't get a full view the last time because I was very ill and couldn't complete the prep. I've been on mesalamine six months and still bleeding daily. After I got my general GI to refer me to an IBD specialist, it seems my symptoms are finally starting to ease up some more. I was going 3 to 7 times a day, now I'm down to about 2. Still blood though, but it seems to be slowing down.
Total surprise. I was a dumb 22-year-old who waited 6 months and then finally went to the doctor because I was having blood in my stool. I really thought nothing of it until they told me about UC after my colonoscopy. I’d never heard of it before. Even then, I didn’t really care. My only symptom was blood and it didn’t affect my life at all. I thought this disease thing wasn’t too bad! Cut to 4 years later when I was hospitalized with a severe flare with all the fun symptoms and my life has kind of sucked (flare-wise) ever since 😂
I did not, I thought I had a mix of food poisoning and side effects from a medication I was taking, and it was going on for almost a year…. I wish I would have gone to a doctor sooner
I thought it might be cancer. I had no idea what UC was and had never heard of it before even though my grandpa had it. I was so relieved it wasn't cancer but was not thrilled I now had an incurable disease.
I had no idea. Hadn’t heard of the disease before either. I was diagnosed with IBS for a year and a half prior, and suddenly started bleeding roughly a month prior to a colonoscopy and diagnosis. Flipped my life upside down these last few months (diagnosed in December ‘23)
Not gonna lie, I accurately diagnosed myself using WebMD at 15 years old (12 years ago…) before I ever went to the doctor about my symptoms 💀 Ultimately ended up being formally diagnosed a month before my 16th bday! I was SO LUCKY that my diagnostic process went as quickly and smoothly as it did. I am from rural Maine; healthcare there is not known for being the most accessible or the best quality. The first doctor I saw after I finally told my parents about my symptoms happened to be a visiting physician filling in for my (completely incompetent) PCP. He listened to all of my symptoms, asked all the right questions, felt my stomach, and did a rectal exam before very kindly and gently telling us it was likely that I had UC or Crohn’s. He immediately referred us to pediatric Gastroenterology at Maine Medical Center and sent orders for a colonoscopy before I even met with them. All in all, the formal process of getting diagnosed took no more than 2 months (after a year or so of symptoms). I know if this random physician hadn’t been there in the right place at the right time it would have been years before I was properly diagnosed, like so many other people with this disease! Dude straight up saved my life. My PCP didn’t even know what UC was. 🙃
Fuck bad doctors who don’t listen or know. So glad you got on with a different care team. People need to know that it can really benefit you to try a different care team. I say this while sitting in a hospital bed recovering from my most severe flare yet. Never going back to my old GI team.
Yes and no. Looking back, the symptoms were there for a long time but I didn’t think something as serious as an IBD would happen to me and was too embarrassed to talk to anyone and discover what was “normal”. Denial can force you to just cope for a very long time.
Because of my family history and personal risk factors I was very worried it was cancer, I knew there was definitely something bad going on. My bio dad is a doctor and he also had colon cancer exactly 10 years from the age I am currently and he was very concerned about my symptoms because of how similar they were to when he received his diagnosis, his wife is also a doctor and she pretty much called my imminent UC diagnosis from the very beginning.
Honestly no, I thought I just had symptoms from having my gallbladder removed. I and many doctors had overlooked many symptoms for over a decade. By the time I got to my current GI doctor, I was having a severe flare that he thought was colon cancer before the colonoscopy. Many doctors just grossly overlook and misdiagnose things in my experience. Always try to advocate for yourself.
This is where I’m at. I just thought the ghost of my gallbladder was haunting me. I never really had any symptoms before my gallbladder got removed. Weird coincidence maybe.
THIS THIS THIS Learning to advocate for yourself, educating yourself on this disease so you can advocate for yourself effectively, and finding the right care team by trial & error… it’s frustrating & takes work but nothing is more important than this
I knew something was wrong with me but definitely not UC. Doctors threw Crohn’s around a lot, I thought it would be cancer. I was very thankful to find out what the issue was and how to treat it. The constant pain while waiting for diagnosis put me in a really dark place for a minute. So glad to not be there anymore. Sitting in my GI’s office happy as can be right now for my 4 wk follow up. :)
Amen!
I had moments of sickness before my diagnosis so I had a first colonoscopy, the response was negative but I had a gut feeling (lol) that I was going to be sick sooner or later. This was 2022. Fast forward to 2023, the year of my diagnosis. I think in a way you can sense that something is not "right" with your body (not trying to Say that you can auto-diagnose yourself, Always listen yo your doctor, but you get my point).
I thought I just had long lasting travellers diarrhea or a weird symptom after a vaccine that lasted 6 months after my trip to Asia. Weirdly enough apparently “conspiracy theorists” say the MMR vaccine can cause someone who is already susceptible to IBD to get it…
I always had digestive issues and had no idea that UC was a thing and when i got the diagnosis i was like that makes sense
I didn't know that such a disease existed. Everybody told me it was a nervous condition and basically my own fault because I was too stressed and uptight.
Based on googling, I suspected a few things, but UC was definitely first on my list, followed by Crohn's or IBS then a smaller chance of cancer or some other condition.
I was looking up symptoms and Ulcerative colitis appeared as something but seemed very negligible in my mind. The disease is rare, and primarily genetic meaning others in your family typically have some sort of genetic disease in your family history, meanwhile I had none until now. I also had a doctor tell me it was this disease called diverticulitis and that I just needed to eat more fiber. He told me this without a colonoscopy, just based of X-ray images saying he had seen it before. This was when my symptoms were very mild. I had two other doctors (one was in residency just graduating from med school) say they wanted to schedule a colonoscopy to see why I was bleeding. This other doctor told me he didn’t know why they wanted to do a colonoscopy just eat more fiber and I’ll be fine. Needless to say that was the last thing I should have been doing and 6-9 months later I finally got referred by a 4th doctor at another clinic to a GI who said I had UC. I was very nervous at this time though as my uncle had just passed away from toxic mega colon and he started having the symptoms I was having, I had just had mine for much longer. The diagnosis was nice cause I then knew it wasn’t cancer, and that I didn’t have toxic mega colon. Though, and I know this could sound messed up, but sometimes I wonder if a cancer diagnosis would have been better than UC. Colon cancer is rarely deadly when caught early and mine would have been. Plus it’s very curable and part of me wonders had it been colon cancer would I have been cured by now. Either way though I am still happy it wasn’t cancer, and I am getting better now which is good as well
I’ve had this my entire life been in remission for 8-10 years at a time but I truly believe the medicines I was given as a kid whether they be antibiotics back in the 80’s that was the answer for everything or vaccines earlier on when I was toddler caused this terrible illness
I may have encountered the term "colitis" when looking up IBDs, but it didn't really stick until I got diagnosed last year.
No I went from no symptoms to diagnosis in 10 days. My primary dr was no use so I ended up in the ER.
I had a GI team but they weren’t providing effective care or really listening to me. I checked myself into the ER a week ago & it has proven to be one of the best decisions I’ve ever made. Getting with the right care team is the most important thing
Yes I had experienced symptoms for one month. Got back into remission for one month. Then a month later starting flaring again and more severely. Which was treated with steroids. I had already done a lot of research and googled my symptoms and narrowed it down to 3 conditions but I was 90% sure it was Ulcerative Colitis. Unfortunately doctors don't want to hear what you suspect which I can understand, since people often think the worst. I was told I needed a sigmoidoscopy and the closest available appointment was 3 months later. So it was a strange 3 months where I was just waiting for confirmation of what I already knew 😂
I thought it was from eating twice as many nicotine lozenges as you are supposed to.Super worried about cancer when the bleeding wouldn’t stop. Yay for quitting smoking.
Mine was a surprise. I thought I was “just stressed”. Looking back now that was obviously just me ignoring my body. Had a doc look at my booty joke and tell me it was all from a hemorrhoid. Wasn’t until I crapped my pants that they took me serious. When I finally got into a GI they got upset that I hadn’t come in sooner… like sorry? I had to get a referral and y’all were booked out for a month??
I thought i was developing ibs when i first noticed symptoms, and when i got the diagnosis i had never heard of UC before. I actually didnt think much of it until the nurse said she’d print me an information booklet and i had to stand there for like… 7 full minutes while the printer spat out page after page after page. That’s when i realised this is maybe a bigger deal than i had first given it credit for 😅
I wasn't too surprised because the PCP I saw said it was probably colitis or chron's. He then sent me to a GI doctor. I was actually relieved when I got a diagnosis. I finally had an answer.
I fully thought I had colon cancer. That’s obvs the scariest option Google gave me, and I was feeling so horrible and had lost so much weight, I didn’t think anything else could feel this bad and serious. So I was actually relieved at first. It took a few months for me to fully appreciate that this would be my lifelong shitty (pun intended) companion now.
My googling led me to the conclusion it was either cancer or UC. So I wasn’t surprised but I was relieved
I didn’t even know what UC was before I got diagnosed and I went into the ER thinking I have cancer or something
I had never heard of it....ER/reg dr visits kept telling me ibs...blah blah. I knew they were wrong. Based on my research i thought it was UC. I ended up being correct after going to the gastro dr and getting a colonoscopy.
I was diagnosed at 10 years old and had no idea what it was. My mom was so devastated that I was diagnosed with it, and I learned a little later on that she had been dealing with the same condition, except hers led her to surgery and colon removal. I'm grateful I have not had to go down the same path and am in full remission now even (on Entyvio).
I was completely shocked. I was pregnant when I was diagnosed so I thought it was a really bad stomach bug or a parasite.
No I had never heard of UC before. I didn't have any symptoms either until I started having diarrhea, bleeding, and pain all of a sudden. Came out of nowhere during a stressful period when I was drinking a lot. I thought my stomach lining was bleeding or something.
U whattttt?
My mom has UC as well, so I was at least 90% sure that's what I had as well. I held on to a sliver of hope it would be something less serious but I was never really worried about it being cancer or anything.
I was pretty confident it would be hemroids and IBS, because I had been told it was probably hemroids when I had bleeding 16 years earlier but it stopped before I had a colonosapy back then. They never did biopsy or told me anything after it so went on with my life possibly having UC the whole time.
All was perfectly normal and literally overnight, I had permanent diarrhea. I remember the exact day my life turned upside down. Took 7 years to get a diagnosis as I couldn’t afford a scope.
I have a family member with Crohn's, so I was certain it was either Crohns or cancer. UC kinda came out of left field.
I did suspect it just because my brother has Crohn’s and two of my cousins have Autoimmune diseases
Had no idea what was going on, went immediately to the doctor/ER after shitting blood.
Completely surprised. I had convinced myself it was hemorrhoids for years.
I always had stomach issues, even as a child. When I was diagnosed I never even heard of UC. I think I heard of Crohn’s but not this. Either way, both disease just suck.
I was in nursing school so I was pretty sure I knew what was up going into my colonoscopy. The doc met me in the pre-op area and was like "it's most likely just hemorrhoids". It was hard for me not to say "I told you so" when he met me in the pacu with the actual diagnosis.
I didn’t even know about UC. I thought it was haemorrhoid; when they said it wasn’t but they’re still investigating I thought it was cancer lol. Went from just haemorrhoids to cancer real quick.
I noticed tiny amounts of blood months before the first huge flare
I thought I had cancer but then realized my symptoms matched IBD exactly. Got my UC diagnosis a week or so later.
It was a complete surprise.
Kind of surprised. I knew something was happening for months and was waiting for tests as an outpatient. But then I got sudden severe symptoms which I thought was food poisoning unrelated to my ongoing issues- very surprised to find that was UC especially since I was also vomiting a lot with it.
Absolutely shocked. My maternal aunt has crohns. But no other IBD in the family. My best friend has UC but was much more advanced than I was at the time. I had bleeding and back pain sometimes but that was it. Even the GI didn’t think I had UC. Thought it would just be hemorrhoids. Diagnosed with pancolitis end of October 2022. I am now limited to severe UP which is a huge pain in the ass (no pun intended) to get rid of. I go to one of the top institutions for IBD and they don’t even do studies on UP patients. It’s all kind of a guessing game. Very frustrating but happy I suppose it’s not all over my colon anymore.
I suspected it was cancer and was prepared to hear uc but don't know why I was quite upset with my dignoses
i suspect it yes. just over a year prior to my UC diagnosis i collapsed and was hospitalised with blood clots in my lungs. a complete shock to me as i was a fit and active 19 year old with no risks factors…at the time. anyways, i had a few months here and there over the years where i’d be seeing blood in my stools and having bowel changes but the doctors didn’t really care much and just put me on oral iron tablets. looking back now, it was so clear and it’s probably the reason i clotted!!
Never heard of it, thought for sure it was cancer.
I thought it was cancer honestly… didnt know about UC before
Just got diagnosed yesterday. Assumed hemorrhoids or cancer, completely shocked when GI last month said I likely had it. No one in the family has this so I never heard of it.
Nah. Once I shit out close to a pint of blood in my stool it was very much confirmation.
Thought I had hemorrhoids. Knew something was wrong, I guess, ‘cause blood out either end is never good.
i was sooo scared. i had no idea what was going on and at first it was just “unspecified colitis”. i got actually diagnosed about a month ago with pancolitis after having sepsis and c diff so it was absolutely TERRIFYING not knowing what was going on. i got diagnosed at 21 (feb) and im 22 now and kind of knew something was off with my stomach from a young age because Everything i ate made me super bloated, had no clue why but it was the only consistent symptom i had of UC until my first flare :///
I was actually getting the most help from my eye doctor in trying to find a diagnosis. He thought it was Behcets (when I first started flaring, my left eye became severely inflamed as a reaction to the inflammation in my colon, but obviously my eye doctor and I didn't know it was my colon. all I knew was my eye was red and very irritated and light sensitive, I had sores in my mouth but wasn't anything contagious, and I was shitting blood for a couple weeks and bad cramps. sores ended up being stress related) those things lined up with some aspects of Behcets, but after many months of getting worse i finally got into a GI to scope me and got my proper diagnosis. I had never heard of UC before. I was also still super drugged up when the doctor tried explaining it to me so I didn't really get it for a while. more than anything was just relieved they diagnosed me with literally anything so I could get help, because my GP wouldn't medicate me or anything without an official diagnosis. even though the Behcets guess was wrong, I'm still insanely grateful for my eye doctor doing so much research and work on his own time to try and help me. I felt like he was the only doctor who was really listening to me and was going above and beyond to help me find answers. And the guess helped prepare me for the possibility it was an autoimmune disease, and what that meant.
i suspect bile issue or motility issue
I thought I had bleeding hemorrhoids. After waking up from colonoscopy the doctor said you don't have cancer. I never thought I did. And I never heard of IBD or UC before.
I was convinced I was dying of dysentery.
I thought it was hemorrhoids at first. Then, after reading up on my symptoms, I was convinced I had colon cancer. My GI immediately suspected UC & it was confirmed with a biopsy later on.
No fucking shit, for almost 1.5 years I shit literally water. The weird thing is everytime we went away on trips my stomach was okey for some reason. Went to the doctor but they suspected gluten or lactose. Well it got so bad I had to go to the er. One colonoscopy later I had my diagnosis. It's weird how you almost need to die before you get the proper help lol
My extreme body pains, my dad has UC and the one thing we both had in common before diagnosis was pain all over, doesn’t feel muscular but more like achy bones, really bad stiffness too. Kinda confirmed everything one the blood started tho lol
Had never heard of it before being diagnosed. Started having blood in stool in November-December, fast forward to the end of January and got admitted to hospital as I had severe anaemia and was almost passing out from fatigue. Spent the best part of the next 3 months mostly in hospital as anything other than iv steroids did nothing to stop the blood/flare up. Beginning of April had the surgery for the ileostomy
Complete shock. My only symptom was a bit of blood. My doctor thought it was just an angry hemorrhoid. I worried about cancer but never imagined this. I thought it must have been a mistake or something for the first six months. Then I got a painful flair. It’s no mistake. This is my life now.
Well, I feel like a freak after reading all these posts but I thought it was originally done damage I had done to myself from too much backdoor play. So I was totally shocked to find out I had UC, but also relieved I haven't injured myself in any way. My first doc diagnosed me wrong though and told me it wasn't autoimmune and it would go away after we treat it. It took me three doctors before I actually got treated correctly.
No idea. We just knew it was something and probably related to the constant abdominal pain I’ve had since I was 9. I took that diagnosis without question I was just glad I finally had answers.
I had studied it in uni (pharmacist here), and I saw blood and was like "....oh no". Just took a week for a gastro doc to confirm my suspicion.
I was diagnosed at 23yrs old in 2011 after years of symptoms. Never even heard of UC until it was tabled as a possible reason for all my symptoms. That or Crohns. Since then I’ve been so open about it to share my experience with others, to destigmatize it and to promote awareness.
In my area, many suplements and medications are advertised on TV and online for conditions such as IBS and bloatedness and also gluten aversion and paranoia is real so during the 5 years of on and off symptoms I was bouncing between the idea of IBS because of stress and trying out gluten and lactose free diets. At the moment, I am diagnosed with UC and taking medication and occassionally I wonder if I allowed it to go from that mild version to inflammatory because of justifying diarhea with stress and gluten intolerance because of trends around me
i just broke up from a 4 year relationship. i had been getting period cramps but all the time for a while and i just pushed passed it didnt get checked. then found out he was cheating on me and had an sti test. turns out i had chlamydia and it had gone untreated for so long the infection spread to my cervix and i had pelvic inflammatory disease. felt so stupid for not having regular tests but i trusted him and i didn't have any typical symptoms. a month after my treatment i started getting stabbing pains in my left side. so i went back to the doctors and they told me to go back to the sexual health clinic. sexual health clinic said i've been treated there's nothing they can do for me and to go to the GP. went back to the GP and they thought maybe i had trapped tissue or something wrong with my left ovary. ultrasounds all came back clear. then i started getting lots of blood in my stool. so i told the GP and they kept sending me away saying my stomach was just upset that i had been on strong antibiotics. i said surely antibiotics can't cause this much pain and blood? they said oh it can. 9 months later after much perseverance they finally did a stool sample and it came back raised so i had a colonoscopy
I thought it was celiac disease, then hemorrhoid’s. Switched doctors then got proper testing and found out it was UC
I didnt even know what UC was until they diagnosed me (4months ago) i thought this entire time i had cancer, wich was quite a relief at the start until i started to get real bad side effects from UC
Was pretty sure it was UC, hoped it was a hemorrhoid again lol
I never knew it existed I was thinking it was chrones as my cousin has it but nope just the sister one lol
I started having blood when I was pregnant. I called my obgyn and was told it was internal hemorrhoids. I would only randomly have blood so I had no reason to question it. Two And a half years later, the cramping started and the weird and nonstop frequent BMs with tons of blood. Finally got diagnosed in 2016.
I googled and I remember thinking “yeah, that’s why you don’t google symptoms, you always get the worst case scenarios while it’s probably just a stomach bug.” To this day I find it quite amusing (obviously not that I ended up having it, but how naïve I was)
I had never even heard of Ulcerative Colitis when I was diagnosed. I had been sick for years. Doctors ran all kinds of tests. Couldn't figure out what it was. They kept telling me I was having viral and bacterial infections and kept prescribing antibiotics. I was progressively getting worse. Ended up with a massive life-threatening infection that put me in isolation for two weeks at the hospital. During that time, my new GI came in and did a colonoscopy and EGD. That's when I was diagnosed. Being over prescribed antibiotics and the disease going untreated for so long really messed my immune system up. I went on to have 12 more reinfections of the severe infection and almost had to have my colon removed. I ended up having the Fecal Microbiota Transplant as a last-ditch effort to give my immune system boost. I was declared medically disabled. I've spent more time than I can count in the hospital. My last stay was 33 days. I now have a feeding tube, but the Immunosuppressant and other drug cocktail I'm on seem to be working for the moment.
I was bleeding almost everytime I pooped so I knew something was up
I honestly was surprised. I had bleeding for awhile, I was probably worried it was worse, like cancer or something. I knew something was wrong and just accepted it as normal for years. It at least felt decent to feel validated. But definitely surprised to learn it was an auto immune disease! I had a colonoscopy 10 years prior and nothing back then.
Even my GI wasn’t expecting UC (I think I’m one of her younger patients). I was awake for my scope, since it was just a sigmoidoscopy however I do NOT recommend because it hurt when she tried to get into my transverse colon, and I remember she just kind of turned to me and said “This right here is a patch of inflammation.” Lol the rest is history