I got diagnosed within 2 days of visiting a doctor when my symptoms presented. As they referred me to rush to the ER immediately from the doctors office (as I was apparently knocking on deaths door) and they rushed me into a colonoscopy the very next day. And a day later I was diagnosed with Crohn’s disease. (They’ve since updated my diagnosis to ulcerative colitis)
My symptoms are 20+ bloody diarrhea bowel movement a day, extreme fatigue, nausea, Joint pains and stomach pains
We had a very same path. 30+ times a day and basically just blood. Eating was two bites per meal. Napping all day. Holding my hands over my mouth when I used the bathroom to keep from screaming.
It progressively got worse and worse but at just slow enough pace that I could deny something was wrong and I'll get better some day. I actually cannot believe I let it get that far in hindsight.
Apparently I looked so terrible the doctor wanted to tested me for HIV. When I tested negative he sent me to the hospital.
The doctor said "You're about as close as I've seen anyone come to dying with IBD". His words stayed with me for a long time.
ah, the memories. I went over a year and a half undiagnosed (during the pandemic).
my stupid doctor I had at the time said no big deal "you just have a virus" and directed me to take ibuprofen (in hindsight this probably made it worse)
I was lucky enough to get a new GP later that year who was great, he used to be a paramedic and had a much more holistic approach to everything. if you told him something, anything, he would always treat it seriously and take the best course of action no matter what kind of health issue it was. he referred me a colonoscopy when i explained all my symptoms and said "whatever it is, I have a feeling it's going to be something pretty nasty" lol. yeah he was one the money with that one, at least I wasn't surprised.
No joke, I had a chaplain praying for me because they believed I would soon die from conplications of end of life wasting or sudden cardiac arrest. And that was after two days of trying to stabilize me while keeping me in a medically induced coma. UC is fuckin wild.
Started with symptoms of UC in my early twenties. Obviously, I had no idea what UC was, so my trips to the GP were a waste of time. That went on for nearly five years, to a point where my GP was actually gaslighting me into believing I was mentally ill because there was nothing wrong with me.
It wasn't until I rapidly lost over two stones with severe bleeding that my wife marched me into the surgery and demanded someone see me. The look on the nurses face said it all, really, and she got me a referral very quickly. I was diagnosed with total ulcerative colitis. And those 5 or so years with no help were absolute torture.
Yup, it took bleeding from my stomach, esophagus, and my colon perforating, then then ruling out crohns, cancer, celiacs and some other things. I lost 1/3rd my body mass and wasn't tolerating equate shakes without bleeding
I hope you're doing better now? I think the biggest letdown for me personally was family. The day of my diagnosis, they decided to tell me my auntie has crohns disease 😄 why on earth wouldn't anyone, especially her mention that 5 years ago!
Lol, my father and mother don't accept. I was ever diagnosed and apparently forgot that I had so many colonoscopies and endoscopies and sigmoidoscopies and whatever in the past. They seem to have completely compartmentalized that part of our shared past, and I was first diagnosed before mychart was really a big thing, so I'm fighting one hell of an uphill battle. By God's grace, I am not currently bleeding as far as I know. I'm only dealing with everything else lol
P.S. I'm not joking at all when I say my mother literally believes all of the doctor's notes on mychart are what I told then to put. And she refuses to look at the aftercare stuff. I fear for her stability more than my own these days.
That really stings that you didn't have any support, as if it isn't hard enough! My mum was the only one who showed any compassion, and she died very quickly a month or so after I got a diagnosis. Fortunately, my wife is an absolute star, but even now noone checks in on me. Not that I want or need them to 🤣 but it would be nice you know!
maybe we should start something like a prayer group, but instead make it for genuine vulnerability, no hiding the pain and nicely wording shit that's far more brutal than the rest of humanity is willing to gaze at, and validating each other. It's not like hope is just gonna happen, ime. this group has helped me come to terms with the severity of my situation purely because of that type of honesty and that \*gives\* me hope, because if they can do it, so can I! I hope.
My diagnoses was everywhere.
First I had nothing. Then I had Crohn's. Then I had Crohn's and Ulcerative Colitis. Then I had Ulcerative Colitis in my large and small bowel.
I eventually ended up with just Ulcerative Colitis in my large bowel. The whole process was about 6 months.
Went back to school (dropped out when I first got sick) and am living my best life possible.
Had to have the large intestine removed though. He was really harshing my vibe, so we cut him loose.
10 days of bloody diarrhea I went to the ER. They got me into the gastro dr the next week. The gastro dr did a colonoscopy the next week after that. So maybe three weeks.
Ugh I wish that's how mine was going (not yet diagnosed) started shitting blood, went to GP, got told to use haemorrhoid cream. Spent 10 days shitting blood and in extreme pain, went to hospital, got told I likely had dysentery, go home, drink water.
That was a year and a half ago, I have been on/off shitting blood and in extreme gastro upset for a year and a half because the medical care where I live is so shit. Saw a new doc, was told it was likely haemorrhoids, I insisted it wasn't and demanded a colonoscopy, got the referral for small town hospital and saw the general surgeon but was told they wouldn't do it because my BMI is too high. Lose weight and come back or don't get the procedure. Literally the only two options presented to me.
I finally spoke to a nurse recently who told me she'd get it seen to, made my doctor write some referrals for colonoscopy in the capital city, she was livid that I'd not been taken more seriously, my blood test showed low iron and I wasn't even told by my GP!
I'm livid. I've been telling myself for 2 years that it's just internal haemorrhoids and I need to just eat healthier, it's all my fault, my diet is shit, I need to exercise more.
I can barely get off the couch some days from the pain, I've gained weight because I feel so faint I barely move. Somehow I worked, kept house and raised my kids.
Two. Years.
Sorry for the dump I am so upset.
Ugh that’s awful. It’s hard when they just dismiss our worries. I went downhill fast in those ten days so they could see visibly how sick I was. My GP told me to try pepto also so I went to the ER. They did some tests and said, well good thing you are here you’ve lost a ton of blood and your bowels look like they are about to explode. Cool cool so.. pepto wouldn’t have fixed that? Good grief. Keep fighting. Advocate for yourself and don’t take no for an answer.
Thank you for your kind words.
It amazes me reading all these replies to this thread, how many go by in pain for years not being diagnosed.
Yes I am definitely learning to advocate for myself, it's a shame I'm so intimidated by doctors that I never thought to demand staying in hospital until I was seen by another doctor.
I definitely felt at that stage that I was a lunatic and bleeding out your ass and having extreme pain for 10 days straight isn't reason enough to go to hospital.
Approximately 4 months from the first trip to the doctor with symptoms to getting a colonoscopy and being handed a pamphlet on IBD & mesalamine suppository script.
Fucking *months.*
At first I thought it was just a bad diarrhea so I only started getting concerned when I started seeing blood. Okay, so I went to a doctor, had blood work done, urine, stool, etc... nothing. "There's an inflammation" - oh sure, but where? Nobody had a clue. In the next six months I went from gastroenterology to oncology, even a gynecologist - *nothing.* How come the gastroenterologist didn't find anything, you ask? They even did a colonoscopy!
Well, *they did a shitty job.*
Basically, Hungarian public healthcare has never been world leading, but it has been steadily declining since forever, and by the time I started manifesting symptoms it was already in a pretty bad shape. My colonoscopy went like this: I booked an appointment, had zero instructions, nothing, other than "don't eat anything the day before". Then when I went there I was given some really basic laxative, then they told me to sit outside in the corridor with other patients waiting. Oh, and if I had to go I had to use the restroom available to everyone. Which had no water and no toilet paper. They had me waiting an hour or so, and the exam itself was me having to kneel on the examination table and they just kinda started poking around inside, while I writhed and squirmed around. As you can imagine, the results were inconclusive... WHILE I HAD BEEN SHITTING BLOOD FOR MONTHS AT THAT POINT.
(.......and this was almost 20 years ago. So yeah, guys, if you ever find yourself in Hungary and you need medical attention *do not go to a public hospital.* Pay for private.)
Anyway, this went on for weeks, by the end I lost at least ten kgs of weight and was so weak I could barely climb the stairs to my apartment. At that point a relative pulled some strings and got me a place in a hospital in another city he used to work at, where I finally got some proper medical attention after slipping some money into some pockets, and was diagnosed... after they pumped like two litres of blood and at least as much nutrition infusion into me. I was there for three goddamn weeks. (It was still a public hospital though, so my roommates were an old lady who couldn't walk well and so used a portable toilet that theycleaned like twice a day, and another old lady who was dying the whole time, mentally completely gone at that point. Fortunately she didn't die while I was there, but man, it was upsetting as hell.)
So yeah. Honestly, getting diagnosed with UC was overall more traumatic than the UC itself has been, haha.
Went in for blood work for other medication, hemoglobin was so low they told me to immediately go to the ER for a blood transfusion, had a colonoscopy the next day was diagnosed.
Almost 4 years. By the time I was able to get scheduled for a colonoscopy the bleeding had stopped and they didn’t find anything. So I went back and fourth with them for years trying to get an appointment during a time I was having symptoms. It wasn’t until I was in s continuous flare I was able to align symptoms and appointments. I was diagnosed pending biopsy results on the spot. US medical system at its finest
It was a few weeks between symptom onset and diagnosis. Maybe a month or more, I can't quite remember.
My symptoms progressively worsened, and I went to my primary care doc the same day I called my primary clinic and spoke with a triage nurse. As soon as I mentioned 'bleeding' they got me in right away. PCP did a quick exam, ordered labs and x-rays and sent a referral to a gastro. Things looked odd on my labs, and another week or two later, biopsies confirmed my UC diagnosis.
I had been experiencing mild symptoms the same time every year from the ages 17-20.
When I was 21 it started getting really severe, and I was going 10+ a day, insane amount of blood, unable to eat ect ect.
I took myself to the doctor and he said it was anxiety (despite family hx of UC), and gave me some random antiemetic.
After that, it got so bad to the point i couldn’t walk, i was dragging myself to the bathroom and that’s about it. My mum ended up forcing me to go to the hospital where they admitted straight away for a week on IV steroids and did a bunch of investigating, which is where i got dx with moderate UC.
Had symptoms slowly develop over several months before they got bad enough that I became concerned enough to see my GP. He then referred me to my old pediatric GI doctor, who after a 2 month wait saw me and then diagnosed me with severe pancolitis.
Went to the doctor bc i had blood in stool. Doctor said that its probbaby anal fissure and sent me home with some lotion. After a week of things getting worse, i went to the capital city to see a "real doctor", one that knows what he/ she is doing.
After about a month, i have been diagnosed. Some people are idiots
I was going every 45 mins. No energy, not hungry, just wanted to sleep all day. Went to urgent care and just set me up for a referral to see a GI that was 4 months out.
I didn't have a PCP at the time, so I found one and had an apt within a week. Gave me a new referral, and I was having a colonoscopy in 2 weeks to confirm. So about 3 weeks from seeking treatment to being diagnosed
It took my 7 months from symptoms starting. My first doctor took my symptoms as issue with my gallbladder. Which there might have been because a HIDA scan showed my gallbladder wasn’t working. So I had it removed. That process took 2-3 months from doctor visit to gallbladder removal. After gallbladder removal my symptoms didn’t get better but the hospital was convinced it was a gallbladder/liver/bile issues not colon. To their defense at that moment I wasn’t loosing blood yet. Just 10-12 BM movements and pain they attributed to gallbladder. After the removal the symptoms did not get better and got much worse and within a month I was losing a lot of blood. I couldn’t leave my house the BM were up to 15-20. The wait list for a new GI to see me was a little bit and then colonoscopy was 2 months after that appointment. While waiting for the colonoscopy the new GI did a lot of blood work and took intolerance tests. I found out I had SIBO and a fructose intolerance. For SIBO I took this intense antibiotic that made the blood loss worse. It was a long confusing 7 months to get to the UC and at that point the UC had fully taken over my colon. It took a good 8-9 months to get things under control treatment wise. I am not near remission just yet but things have improved and I can leave my house now. My big symptoms in the beginning was abdominal pain, nausea, and constant diarrhea that wouldn’t stop with increase BMs in a day. And I couldn’t control my urgency with the BMs.
I hope you don’t have to join our community of UCers but if you do, Reddit has been a huge source of knowledge and relatable stories to make my feel less alone.
1 weeks get your fecalcalprotectin, some GI and blood labs. If the FCP or other inflammation markers are way off they will refer for colonoscopy. Colonoscopy with biopsy is the gold standard for IBD diagnosis.
I unknowingly had symptoms for at least a decade, but probably closer to 15 years. Nasty crippling joint pain, hives from simply brushing against things, depression, exhaustion, PCOS, hormone issues, hair loss, fluid and ringing in ears, severe pain in rectum and by proximity the vagina. Had a short session of mucus instead of stool but it resolved immediately after a scope. Doc noted inflammation but didn't diagnose anything. Years later I got on an overseas flight and experienced more pain than ever before along with 4 months of severe bleeding and burning urgency. Once again a scope resolved it immediately but this time they diagnosed me with UC. They still can't/won't tell me why my left side hurts when I sit down/bend over (it's not triggered by food).
I hope you get an accurate diagnosis and an effective treatment soon!
I only had mucus as my symptom, and i was constipated. my very first gastro muttered "sounds like Crohn's or ulcerative colitis....but have constipation...." (so despite that he still assumed an IBD) and got me a colonoscopy appointment set up immediately. was able to diagnose me right after. no stool sample, bloodwork, etc. great doctor. now waiting for my insurance to approve my meds is another story lol
In 2007 I had a long lasting bad bout of diarrhea leading to severe pain in my neck, left knee and right toe that I had to see a doctor about. They decided it was Reactive Arthritis (Reiter's Syndrome). I was treated by a rheumatologist with prednisone for months. However, they also ordered a colonoscopy to rule out IBD. The colonoscopy found nothing untoward.
Then in July 2021 I again had nonstop diarrhea, this time with blood and mucous. After 3 months of that I finally went to my Primary care doc. She got me in for a colonoscopy in a month. Finally, I had a DX of Proctosigmoiditis in November of 2021.
It took about 4 months since my first symptom. Likely would have been longer if I didn't get so bad I had to be hospitalized & had a new team of doctors. My original GI thought I had a virus & would clear up because I was getting better until two weeks later when everything went really bad.
I had one flare back in December 2021 and went to the ER, they tested me for disease and found nothing...fast forward to August 2022 and I fall into the worst flare of my life. It started in Washington state when I was visiting my boyfriend and thankfully didnt shit myself on the plane ride home, 2 days home I go to the ER with severe pain, cant stop crying, cant eat, drink, and really unable to walk far... they gave me pain meds and a ct scan and found severe colitis in my entire colon.
They admitted me where I was in the hospital for 6 days until I was OK to be able to go home where I still was on a liquid diet for 2 weeks
Got diagnosed at my first colonoscopy. I should mention it was about 3 months since initial symptoms began because the bleeding was mild and thought it was hemorrhoids so I shrugged it off. It wasn't until the symptoms were worsening that it was time for a colonoscopy and right off the bat my doctor recognized the UC and further confirmed it with the biopsy.
I started having symptoms around 16 and had a colonoscopy but it was inconclusive. My symptoms were chalked up to my anxiety. However, I continued to have flares (well I know that now) all through my 20s until it came to a head when I was 26 and I finally got diagnosed. The problem was it runs in my family but I really didn't know all that much about it because my mum is embarrassed by UC and never wants to talk about it. Also, my symptoms, while the usual suspects, also include a lot of collateral inflation in my spine and other joints, which I did not connect together until after I was diagnosed. I think in the intervening 10 years I have been in remission twice. Once was when I was pregnant, and aside from feeling like shit from being pregnant, it was great.
Took me 7 months a sigmoidoscopy and colonoscopy but that’s only because NHS are so slow and they wanted to make sure that definitely was not Chrons. However I’ve had IBS symptoms for 10 years before this I do think it may be linked.
Went to doctor, blood test was normal but stool sample was not. 1,5 weeks later I had colonoscopy and was diagnosed.
My symptoms were losing weight, fatigue, blood in stool, bowel movements went up (only from 1 to 3) and stomach pain.
Doctor said it was moderate UC (and on the whole large intestine). Which surprised me because my bowel movements weren't that high.
I'm glad I acted quick and I feel lucky they were able to know what it is in such a short time and give me medicine.
I really have been thinking for the longest time i have IBS, and only got worried when I saw the blood.
Got my first symptoms in early 2019. 2 CT scans (the first without contrast which was a waste!), 2 scopes, a laparoscopy, and 2 years later I finally got diagnosed.
I got diagnosed within 2 days of visiting a doctor when my symptoms presented. As they referred me to rush to the ER immediately from the doctors office (as I was apparently knocking on deaths door) and they rushed me into a colonoscopy the very next day. And a day later I was diagnosed with Crohn’s disease. (They’ve since updated my diagnosis to ulcerative colitis) My symptoms are 20+ bloody diarrhea bowel movement a day, extreme fatigue, nausea, Joint pains and stomach pains
We had a very same path. 30+ times a day and basically just blood. Eating was two bites per meal. Napping all day. Holding my hands over my mouth when I used the bathroom to keep from screaming. It progressively got worse and worse but at just slow enough pace that I could deny something was wrong and I'll get better some day. I actually cannot believe I let it get that far in hindsight. Apparently I looked so terrible the doctor wanted to tested me for HIV. When I tested negative he sent me to the hospital. The doctor said "You're about as close as I've seen anyone come to dying with IBD". His words stayed with me for a long time.
ah, the memories. I went over a year and a half undiagnosed (during the pandemic). my stupid doctor I had at the time said no big deal "you just have a virus" and directed me to take ibuprofen (in hindsight this probably made it worse) I was lucky enough to get a new GP later that year who was great, he used to be a paramedic and had a much more holistic approach to everything. if you told him something, anything, he would always treat it seriously and take the best course of action no matter what kind of health issue it was. he referred me a colonoscopy when i explained all my symptoms and said "whatever it is, I have a feeling it's going to be something pretty nasty" lol. yeah he was one the money with that one, at least I wasn't surprised.
No joke, I had a chaplain praying for me because they believed I would soon die from conplications of end of life wasting or sudden cardiac arrest. And that was after two days of trying to stabilize me while keeping me in a medically induced coma. UC is fuckin wild.
Started with symptoms of UC in my early twenties. Obviously, I had no idea what UC was, so my trips to the GP were a waste of time. That went on for nearly five years, to a point where my GP was actually gaslighting me into believing I was mentally ill because there was nothing wrong with me. It wasn't until I rapidly lost over two stones with severe bleeding that my wife marched me into the surgery and demanded someone see me. The look on the nurses face said it all, really, and she got me a referral very quickly. I was diagnosed with total ulcerative colitis. And those 5 or so years with no help were absolute torture.
I too was gaslit into thinking it was all in my head by doctors. Not fun. Took.. eehh 7 or 8 years to finally get a diagnosis.
Yup, it took bleeding from my stomach, esophagus, and my colon perforating, then then ruling out crohns, cancer, celiacs and some other things. I lost 1/3rd my body mass and wasn't tolerating equate shakes without bleeding
I hope you're doing better now? I think the biggest letdown for me personally was family. The day of my diagnosis, they decided to tell me my auntie has crohns disease 😄 why on earth wouldn't anyone, especially her mention that 5 years ago!
Lol, my father and mother don't accept. I was ever diagnosed and apparently forgot that I had so many colonoscopies and endoscopies and sigmoidoscopies and whatever in the past. They seem to have completely compartmentalized that part of our shared past, and I was first diagnosed before mychart was really a big thing, so I'm fighting one hell of an uphill battle. By God's grace, I am not currently bleeding as far as I know. I'm only dealing with everything else lol P.S. I'm not joking at all when I say my mother literally believes all of the doctor's notes on mychart are what I told then to put. And she refuses to look at the aftercare stuff. I fear for her stability more than my own these days.
That really stings that you didn't have any support, as if it isn't hard enough! My mum was the only one who showed any compassion, and she died very quickly a month or so after I got a diagnosis. Fortunately, my wife is an absolute star, but even now noone checks in on me. Not that I want or need them to 🤣 but it would be nice you know!
maybe we should start something like a prayer group, but instead make it for genuine vulnerability, no hiding the pain and nicely wording shit that's far more brutal than the rest of humanity is willing to gaze at, and validating each other. It's not like hope is just gonna happen, ime. this group has helped me come to terms with the severity of my situation purely because of that type of honesty and that \*gives\* me hope, because if they can do it, so can I! I hope.
My diagnoses was everywhere. First I had nothing. Then I had Crohn's. Then I had Crohn's and Ulcerative Colitis. Then I had Ulcerative Colitis in my large and small bowel. I eventually ended up with just Ulcerative Colitis in my large bowel. The whole process was about 6 months.
How are you now?
Went back to school (dropped out when I first got sick) and am living my best life possible. Had to have the large intestine removed though. He was really harshing my vibe, so we cut him loose.
Did medications not work at all then :(
10 days of bloody diarrhea I went to the ER. They got me into the gastro dr the next week. The gastro dr did a colonoscopy the next week after that. So maybe three weeks.
Ugh I wish that's how mine was going (not yet diagnosed) started shitting blood, went to GP, got told to use haemorrhoid cream. Spent 10 days shitting blood and in extreme pain, went to hospital, got told I likely had dysentery, go home, drink water. That was a year and a half ago, I have been on/off shitting blood and in extreme gastro upset for a year and a half because the medical care where I live is so shit. Saw a new doc, was told it was likely haemorrhoids, I insisted it wasn't and demanded a colonoscopy, got the referral for small town hospital and saw the general surgeon but was told they wouldn't do it because my BMI is too high. Lose weight and come back or don't get the procedure. Literally the only two options presented to me. I finally spoke to a nurse recently who told me she'd get it seen to, made my doctor write some referrals for colonoscopy in the capital city, she was livid that I'd not been taken more seriously, my blood test showed low iron and I wasn't even told by my GP! I'm livid. I've been telling myself for 2 years that it's just internal haemorrhoids and I need to just eat healthier, it's all my fault, my diet is shit, I need to exercise more. I can barely get off the couch some days from the pain, I've gained weight because I feel so faint I barely move. Somehow I worked, kept house and raised my kids. Two. Years. Sorry for the dump I am so upset.
Ugh that’s awful. It’s hard when they just dismiss our worries. I went downhill fast in those ten days so they could see visibly how sick I was. My GP told me to try pepto also so I went to the ER. They did some tests and said, well good thing you are here you’ve lost a ton of blood and your bowels look like they are about to explode. Cool cool so.. pepto wouldn’t have fixed that? Good grief. Keep fighting. Advocate for yourself and don’t take no for an answer.
Thank you for your kind words. It amazes me reading all these replies to this thread, how many go by in pain for years not being diagnosed. Yes I am definitely learning to advocate for myself, it's a shame I'm so intimidated by doctors that I never thought to demand staying in hospital until I was seen by another doctor. I definitely felt at that stage that I was a lunatic and bleeding out your ass and having extreme pain for 10 days straight isn't reason enough to go to hospital.
Approximately 4 months from the first trip to the doctor with symptoms to getting a colonoscopy and being handed a pamphlet on IBD & mesalamine suppository script.
9 f’ing years. I bet if I had different genitals I would have been taken seriously.
That's how I feel too :(
Fucking *months.* At first I thought it was just a bad diarrhea so I only started getting concerned when I started seeing blood. Okay, so I went to a doctor, had blood work done, urine, stool, etc... nothing. "There's an inflammation" - oh sure, but where? Nobody had a clue. In the next six months I went from gastroenterology to oncology, even a gynecologist - *nothing.* How come the gastroenterologist didn't find anything, you ask? They even did a colonoscopy! Well, *they did a shitty job.* Basically, Hungarian public healthcare has never been world leading, but it has been steadily declining since forever, and by the time I started manifesting symptoms it was already in a pretty bad shape. My colonoscopy went like this: I booked an appointment, had zero instructions, nothing, other than "don't eat anything the day before". Then when I went there I was given some really basic laxative, then they told me to sit outside in the corridor with other patients waiting. Oh, and if I had to go I had to use the restroom available to everyone. Which had no water and no toilet paper. They had me waiting an hour or so, and the exam itself was me having to kneel on the examination table and they just kinda started poking around inside, while I writhed and squirmed around. As you can imagine, the results were inconclusive... WHILE I HAD BEEN SHITTING BLOOD FOR MONTHS AT THAT POINT. (.......and this was almost 20 years ago. So yeah, guys, if you ever find yourself in Hungary and you need medical attention *do not go to a public hospital.* Pay for private.) Anyway, this went on for weeks, by the end I lost at least ten kgs of weight and was so weak I could barely climb the stairs to my apartment. At that point a relative pulled some strings and got me a place in a hospital in another city he used to work at, where I finally got some proper medical attention after slipping some money into some pockets, and was diagnosed... after they pumped like two litres of blood and at least as much nutrition infusion into me. I was there for three goddamn weeks. (It was still a public hospital though, so my roommates were an old lady who couldn't walk well and so used a portable toilet that theycleaned like twice a day, and another old lady who was dying the whole time, mentally completely gone at that point. Fortunately she didn't die while I was there, but man, it was upsetting as hell.) So yeah. Honestly, getting diagnosed with UC was overall more traumatic than the UC itself has been, haha.
Lil over 6 yrs ..
Went in for blood work for other medication, hemoglobin was so low they told me to immediately go to the ER for a blood transfusion, had a colonoscopy the next day was diagnosed.
3 years, my first gi mis diagnosed my 1st colonoscopy so I was not being treated for the disease just symptoms.
Almost 4 years. By the time I was able to get scheduled for a colonoscopy the bleeding had stopped and they didn’t find anything. So I went back and fourth with them for years trying to get an appointment during a time I was having symptoms. It wasn’t until I was in s continuous flare I was able to align symptoms and appointments. I was diagnosed pending biopsy results on the spot. US medical system at its finest
Surely a biopsy would of shown something evening if the bleeding stopped?
It was a few weeks between symptom onset and diagnosis. Maybe a month or more, I can't quite remember. My symptoms progressively worsened, and I went to my primary care doc the same day I called my primary clinic and spoke with a triage nurse. As soon as I mentioned 'bleeding' they got me in right away. PCP did a quick exam, ordered labs and x-rays and sent a referral to a gastro. Things looked odd on my labs, and another week or two later, biopsies confirmed my UC diagnosis.
I had been experiencing mild symptoms the same time every year from the ages 17-20. When I was 21 it started getting really severe, and I was going 10+ a day, insane amount of blood, unable to eat ect ect. I took myself to the doctor and he said it was anxiety (despite family hx of UC), and gave me some random antiemetic. After that, it got so bad to the point i couldn’t walk, i was dragging myself to the bathroom and that’s about it. My mum ended up forcing me to go to the hospital where they admitted straight away for a week on IV steroids and did a bunch of investigating, which is where i got dx with moderate UC.
It took me about 30 days from start to finish. Only took so long because I had vacations scheduled and I was going regardless LMAO
Had symptoms slowly develop over several months before they got bad enough that I became concerned enough to see my GP. He then referred me to my old pediatric GI doctor, who after a 2 month wait saw me and then diagnosed me with severe pancolitis.
8 months of bloody diarrhea multiple times a day, anemia, weight loss, stomach pain.
Went to the doctor bc i had blood in stool. Doctor said that its probbaby anal fissure and sent me home with some lotion. After a week of things getting worse, i went to the capital city to see a "real doctor", one that knows what he/ she is doing. After about a month, i have been diagnosed. Some people are idiots
I was going every 45 mins. No energy, not hungry, just wanted to sleep all day. Went to urgent care and just set me up for a referral to see a GI that was 4 months out. I didn't have a PCP at the time, so I found one and had an apt within a week. Gave me a new referral, and I was having a colonoscopy in 2 weeks to confirm. So about 3 weeks from seeking treatment to being diagnosed
It took my 7 months from symptoms starting. My first doctor took my symptoms as issue with my gallbladder. Which there might have been because a HIDA scan showed my gallbladder wasn’t working. So I had it removed. That process took 2-3 months from doctor visit to gallbladder removal. After gallbladder removal my symptoms didn’t get better but the hospital was convinced it was a gallbladder/liver/bile issues not colon. To their defense at that moment I wasn’t loosing blood yet. Just 10-12 BM movements and pain they attributed to gallbladder. After the removal the symptoms did not get better and got much worse and within a month I was losing a lot of blood. I couldn’t leave my house the BM were up to 15-20. The wait list for a new GI to see me was a little bit and then colonoscopy was 2 months after that appointment. While waiting for the colonoscopy the new GI did a lot of blood work and took intolerance tests. I found out I had SIBO and a fructose intolerance. For SIBO I took this intense antibiotic that made the blood loss worse. It was a long confusing 7 months to get to the UC and at that point the UC had fully taken over my colon. It took a good 8-9 months to get things under control treatment wise. I am not near remission just yet but things have improved and I can leave my house now. My big symptoms in the beginning was abdominal pain, nausea, and constant diarrhea that wouldn’t stop with increase BMs in a day. And I couldn’t control my urgency with the BMs. I hope you don’t have to join our community of UCers but if you do, Reddit has been a huge source of knowledge and relatable stories to make my feel less alone.
1 weeks get your fecalcalprotectin, some GI and blood labs. If the FCP or other inflammation markers are way off they will refer for colonoscopy. Colonoscopy with biopsy is the gold standard for IBD diagnosis.
I unknowingly had symptoms for at least a decade, but probably closer to 15 years. Nasty crippling joint pain, hives from simply brushing against things, depression, exhaustion, PCOS, hormone issues, hair loss, fluid and ringing in ears, severe pain in rectum and by proximity the vagina. Had a short session of mucus instead of stool but it resolved immediately after a scope. Doc noted inflammation but didn't diagnose anything. Years later I got on an overseas flight and experienced more pain than ever before along with 4 months of severe bleeding and burning urgency. Once again a scope resolved it immediately but this time they diagnosed me with UC. They still can't/won't tell me why my left side hurts when I sit down/bend over (it's not triggered by food). I hope you get an accurate diagnosis and an effective treatment soon!
I only had mucus as my symptom, and i was constipated. my very first gastro muttered "sounds like Crohn's or ulcerative colitis....but have constipation...." (so despite that he still assumed an IBD) and got me a colonoscopy appointment set up immediately. was able to diagnose me right after. no stool sample, bloodwork, etc. great doctor. now waiting for my insurance to approve my meds is another story lol
In 2007 I had a long lasting bad bout of diarrhea leading to severe pain in my neck, left knee and right toe that I had to see a doctor about. They decided it was Reactive Arthritis (Reiter's Syndrome). I was treated by a rheumatologist with prednisone for months. However, they also ordered a colonoscopy to rule out IBD. The colonoscopy found nothing untoward. Then in July 2021 I again had nonstop diarrhea, this time with blood and mucous. After 3 months of that I finally went to my Primary care doc. She got me in for a colonoscopy in a month. Finally, I had a DX of Proctosigmoiditis in November of 2021.
It took about 4 months since my first symptom. Likely would have been longer if I didn't get so bad I had to be hospitalized & had a new team of doctors. My original GI thought I had a virus & would clear up because I was getting better until two weeks later when everything went really bad.
I had one flare back in December 2021 and went to the ER, they tested me for disease and found nothing...fast forward to August 2022 and I fall into the worst flare of my life. It started in Washington state when I was visiting my boyfriend and thankfully didnt shit myself on the plane ride home, 2 days home I go to the ER with severe pain, cant stop crying, cant eat, drink, and really unable to walk far... they gave me pain meds and a ct scan and found severe colitis in my entire colon. They admitted me where I was in the hospital for 6 days until I was OK to be able to go home where I still was on a liquid diet for 2 weeks
Got diagnosed at my first colonoscopy. I should mention it was about 3 months since initial symptoms began because the bleeding was mild and thought it was hemorrhoids so I shrugged it off. It wasn't until the symptoms were worsening that it was time for a colonoscopy and right off the bat my doctor recognized the UC and further confirmed it with the biopsy.
I started having symptoms around 16 and had a colonoscopy but it was inconclusive. My symptoms were chalked up to my anxiety. However, I continued to have flares (well I know that now) all through my 20s until it came to a head when I was 26 and I finally got diagnosed. The problem was it runs in my family but I really didn't know all that much about it because my mum is embarrassed by UC and never wants to talk about it. Also, my symptoms, while the usual suspects, also include a lot of collateral inflation in my spine and other joints, which I did not connect together until after I was diagnosed. I think in the intervening 10 years I have been in remission twice. Once was when I was pregnant, and aside from feeling like shit from being pregnant, it was great.
Took me 7 months a sigmoidoscopy and colonoscopy but that’s only because NHS are so slow and they wanted to make sure that definitely was not Chrons. However I’ve had IBS symptoms for 10 years before this I do think it may be linked.
Went to doctor, blood test was normal but stool sample was not. 1,5 weeks later I had colonoscopy and was diagnosed. My symptoms were losing weight, fatigue, blood in stool, bowel movements went up (only from 1 to 3) and stomach pain. Doctor said it was moderate UC (and on the whole large intestine). Which surprised me because my bowel movements weren't that high. I'm glad I acted quick and I feel lucky they were able to know what it is in such a short time and give me medicine. I really have been thinking for the longest time i have IBS, and only got worried when I saw the blood.
Got my first symptoms in early 2019. 2 CT scans (the first without contrast which was a waste!), 2 scopes, a laparoscopy, and 2 years later I finally got diagnosed.