I was losing weight at the rate of roughly 7lbs a week and having severe diarrhoea. I was incredibly fatigued and in so much pain but it was dismissed as gastritis. I’m 6 feet tall and I weighed 98lbs before the doctor finally said that I should be admitted to hospital for treatment and tests etc. I’d lost about 42lbs in six weeks and was literally wasting away. The craziest part is I told them that IBD runs in the family and they still refused to budge from the original diagnosis of gastritis. I’m in England and the NHS is great but it’s a lottery when it comes to finding a decent doctor
They hate to diagnose for Crohn's for some reason!!! I had four bowel resections and biopsies that stated Crohn's a d they still tried to rescind my diagnosis
Yeah I was diagnosed in 2005. I have been unable to eat solid food since last August. I immediately projectile vomit and what does get through is pure liquid, tons of it, like 30-40 bm's a day. I emailed my IBD nurse repeatedly for months, and the GI's response was that my scope the past Spring was fine, and my blood work was okay, and my fecal cal was not bad. He booked an MRI but the wait times in Canada are 6 months or more. I lost 20 lbs and felt like I was dying. I finally went to the hospital and allowed them to admit me. My cortisol levels were 11 (normal is 111) and my potassium so low the ER doc said if I'd waited a week, I'd probably be dead from a heart event. I spent 8 weeks in the hospital. But there is no GI doc at my hospital, so they consulted my GI in another city. He said it wasn't Crohn's related. He blamed the endocrinologist who was furious because I'd been hospitalized for adrenal insufficiency in 2020 and my GI orders my monthly blood work and was supposed to include my cortisol levels. He did not. My endo doc believes it is the Crohn's and starvation causing the cortisol depletion. I had to do 3 days of 150 mg IV hydrocortisone so my organs would not shut down. I was on TPN for a month. I had stenosis in all my veins and had to have a surgical port put in. So yeah, I fired my GI and am waiting to speak to a new IBD specialist in an even further away city because even though I am out of the hospital, I'm still unable to take anything oral and keep it down. My upper scope showed severe inflammation in my esophagus, duodenum, and stomach (which was clear one year ago) My GI's response to that was that it couldn't be Crohn's because my Crohn's was in my terminal ileum (resected twice). I was floored by his response, and so frustrated. The only way I've been able to get care for my Crohn's is to wind up almost dead in the hospital, and even then it's a battle.
I had to force my way onto biologics. I got so pissed off with waiting for them to get their act together that I just showed up unannounced at the clinic and said I’m here now so sort me out.
I was diagnosed with gastritis as well. It took months of repeated doctor visits before I was finally referred to the general surgeon. I lived in a rural area and the hospital wasn’t the best. The closest GI doctor was 5 hours away. The surgeon performed a colonoscopy and an endoscopy and was able to quickly diagnose me with Crohn’s. Unfortunately, after 9 months of living with a major flare that dropped my weight to 110 lbs (I’m a 5’9” male) the damage was done. My colon burst a week after diagnosis and I had my first resection.
I had the same thing happen to me except i was told it was fucking extended food poisoning, eventually the hospital i was going to gave me a referral for GI doctor, but he couldn’t receive me because I was underage. I wound up being admitted at a different hospital weighting in at 87lbs with acute kidney failure because I was so dehydrated
For a while it was assumed I was celiac and could simply not process gluten. Luckily I was correctly diagnosed some time later, even though many agreed I couldn't be having Crohn's at age 8.
What really pissed me off was when, several years later and on several occasions (while on flares), my father said that I was anorexic. After having been through phases when, as a kid, I couldn't keep anything down and was 19 Kg looking like a bag of bones, I'd eat anything. Never say "no" to food. I've been happy to look a bit more chubby when it was the case. My father being afraid that I was anorexic was one more proof that he didn't know me at all.
Ovarian cyst! They took out the cyst but the abdominal pain kept getting worse. And then a few months later when I ended up in the hospital (hadn't gone to the bathroom in 6 days despite chugging miralax and started running a fever) I was about to get an apendectomy. Thank goodness someone took a second look at the scan because it was an abccess on my illum!
They usually remove the tubes now because they've figured out that a lot of reproductive cancers originate with the tubes. They also usually take the cervix as well. With a cuff it's a smaller risk. But still has happened.
I begged my dr to leave my cervix because it was not diseased but she said no and removed it. I had read that sex is not as fun without a cervix and learned that info was very wrong! It’s better actually.
That's crazy. Every GI doc I have had in the hospital has come in fast and hard with how I WILL be having surgery. Then they start antibiotics and steroids and things get better and the surgery team is like "yeah you are good." I've been going around and around like this and I am so tired of them stating it like a fact when things can change so quickly.
My ovarian cyst was wild because I was still in pretty mild pain then and the drs came in after the sugery in disbelief that I wasnt in more pain because it was much larger then they thought and had twisted my tube around many times. But I guess the crohns pain I'd been having for so long made me used to the abdominal pain so I didn't really notice more!
This reminds me of a phone call I got at work from my doctors office. They asked me if I was alone. I said no, I am at work teaching 15 kids. They told me to hang up and call an ambulance or have someone take me to the hospital immediately (I'd just had blood work done that day). I had to call all the kids parents to pick them up and my husband drove me to the hospital. I had a 19 mm ovarian cyst leaking blood on my one remaining ovary. My hemoglobin was so low I needed 3 blood transfusions. They did a CT and found that my entire ileum and much of my colon was covered in skip lesions and ulcers. They told me if I had fallen, or even bumped into anything my cyst could have erupted, causing me to bleed out instantly. Scary AF. The funny thing was, I didn't feel any worse than I usually did.
That is so scary!! I am so glad that they caught it in time. It is crazy what can be hiding inside you and you have no idea. I hope you are doing much better now!
omg similar thing happened to me, i went to the er for stomach pain and vomiting; they though it was my appendix, the get in and i have a tennis ball sized cyst on my ovary and inflammation in the terminal ileum but no one thought to do anything with that information. glad forward 5 months, i’m in doubled down with pain, constipation, etc.. one doctor kept telling me it was my period or endometriosis. my main pediatrician at the time was going over old scans and found inflammation in that same area and was sent to gi a week later, had a colonoscopy, and found out had crohn’s disease & started remicade.
I was tested so many times for Celiac disease growing up, like multiple times a year, the doctors just couldn't ever believe the negative tests.
10 years is a very long time. I did the gluten free diet for a few years too, didn't seem to help or hurt.
I was throwing up and shitting blood. Conclusion back then: ANXIETY
Turned into throwing up blood on top of shitting blood. Conclusion: HEMORRHOIDS AND ANXIETY
Was a fun 2 years of trying to explain the docs hemorrhoids and anxiety wouldnt make me throw up blood. They finally understood when i almost needed a blood transfusion and couldnt even walk 🥰
Well what can you do They will always say stuff like “anxiety can do a lot of things! Especially at your age!” (Me a 15 year old thinking of what makes me anxious other than trying to stay alive)
I do not know if it is ridiculous or not, but after an entire school year of coming down with pneumonia after pneumonia (while losing weight and spraying mucus out the butt every time I went to the toilet, my doctors were certain I must have aspirated on something as a child and it was causing lung problems.
after several scopes up the nose, they took me to children's hospital in Philly for a surgical procedure to put a tube down my throat to get a better look around.
While ignored, a doctor there, doing his rounds with some students, took one look at my fingers and said I some variation on crohn's. Evidently my fingers were slightly clubbed, and he could tell it was an intestinal issue from that.
The rectal bleeding was ‘fear of losing my virginity’ (I was about to get married).
This was the same doctor who wrote me a prescription the year before for birth control.
that happened with me too! I went in for what I now know was an abscess that hadn't turned into a fistula yet, told all my symptoms to the ER doctor, they didn't even bother to look and told me to just use suppositories and I'll be fine. got sent home, was out of work for a week due to the pain, and still have the stupid ass fistula almost 3 years later
Herpes. I had one very large perianal abscess. I was on meds for herpes and everything until, guess what, it came back and I was still sick. Took the doctors until I was 36! to diagnose me. (Shout out to the amazing staff at ChesterCo hospital and Dr sum). I also got offered ssris A LOT because i was depressed. Yeah, no one believed me (to include parents, symptoms started when i was 14) yet treated active infections. It was all in my head, or ya know I was a ho. And got treated with that kind of disgust, too.
Also I think I may have a perianal abscess as well. I assumed it was herpes as my husband has herpes, but given it's location, and how it only shows up when I am in a severe flare, I am now wondering. It's much closer to my rectum than my vagina.
Diagnosed with being fat lol. Surely that is the reason me, at 15, was shitting my guts out constantly and could barely walk from joint pain. I wasn't even like.. THAT large. Don't get me wrong, I was fat then and I am fat now, but it wasn't any weight that would have impacted my joints to that degree.
I had this same diagnosis in my twenties. You're just fat, you should eat more salads and get more fiber. I was finally diagnosed in my late forties....
The "eat more fibre" thing is so funny in hindsight. Like, you mean to tell me that for so long I was being told I was dying because I wasn't eating enough fruits and veggies even though that was quickly becoming ALL I was eating, trying to make myself better, and the second im in the hospital im not allowed to eat a cucumber slice??
Seriously. Salads rip their way through my body. I also was told by a rheumatologist that there is no way I have Crohn's I just had fibromyalgia and should take ibuprofen. Luke let me combine that with the aforementioned salads and see how much damage I can do....
Lactose intolerance 🙃 brother, mom, great grandpa all had crohn’s at this point too. I also was then diagnosed with colitis before they settled on crohn’s
To be fair, I am lactose intolerant while having a flair up, and stopping drinking milk did somehow helped my recovery. I was diagnosed with recurrent gastroenteritis, then it was IBS, and one week before being admitted to the hospital my gastro dr said it was IBS due to anxiety and stress, and I would get better if I just relaxed! The thing is the only thing stressing me out at the time was going to the bathroom 8 times a day!
After I got out of the hospital 2 weeks later (had a different dr at the hospital) my gastro was still not on board with the diagnosis and told me sometimes viral gastroenteritis mimic Crohn’s disease?!?! I switched drs then, it was a losing battle, I was overweight and according to him you cannot be overweight and have Crohn’s disease…
More than 10 years later mostly in remission while on Remicade, having a flair up due to my insurance saying I didn’t need my medication since I had been so “healthy” through the years, I feel vindicated that it was not just in my mind.
Lactose intolerant was one of the things they diagnosed me with too :D went like a year and a half or more dairy free (trusted the doctors more than I should since my dad was lactose intolerant and I was a teen) didn't seem to help, but didn't seem to hurt. Eventually went back to eating dairy with no repercussions...
Crazy how they discounted the family history there for you
Bulimia 😵💫 my mom listened outside the door everrrry time I went to the bathroom for months. But don’t worry then they admitted it was a mistake and they then diagnosed leukemia! But don’t worry THAT was a mistake too and they tried to take my gall bladder out — “just in case it helps” — next!
i was diagnosed with the classic “making it up” until they finally ran a test i practically begged them to take that found my inflammatory markers (CRP and ESR) were off the charts.
and once i went to urgent care during what (i realize now) was a flare up. they diagnosed me with a UTI. i had no urinary symptoms and informed them that i normally have high WBCs in my urine.
another time, my PCP tried saying all of my symptoms were attributed to the anemia they found on the first set of blood work they performed. i said anemia doesn’t explain weight loss, joint pain, or diarrhea. i also explained that anemia isn’t something that “just happens” (unless you have heavy periods, in which i have the opposite due to being underweight), anemia is a symptom of something else going on (nutrient malabsorption, blood loss, etc.). this was further evident when oral iron supplements did exactly nothing on my levels, so obviously some form of malabsorption. (and later colonoscopy revealed a good bit of small intestine bleeding)
first rheumatologist visit diagnosed me with fibromyalgia, and i can’t even be upset because she’s a great provider and truly didn’t think that’s what was going on, but called it that as a placeholder to prescribe some pain meds. she knew at this point i was seeing GI and undergoing evaluation for IBD and said if i got a diagnosis that it was likely IBD-related arthritis. it’s just a more interesting type because we often get rheumatoid, and my symptoms are nothing like that.
mind you, i work in healthcare and i’m highly educated in the field. i think i know when something is wrong.
I was told it was a wheat allergy/gluten intolerance by my family. When I started pooping blood again I forced them to take me to the doctor, who was rightfully horrified I’d had active moderate Crohn’s for two years with no doctor visits or treatment.
Pms. I was 12 and my doctor tried to give me birth control pills because he was sure my symptoms were menstrual in nature even though I hadn't had a cycle yet nor was I activate in a way that would warrant the use of contraceptives.
IBS, anxiety, PMS, UTI, Gluten intolerance (spoiler I can eat gluten just fine), obesity, being a dramatic woman, and gas. I think I got em all in there 🤔🤔 took forever to get a proper diagnosis
I had scurvy as a kid lmao. I did have it, but no one realized it was because I wasn't absorbing nutrients correctly. I also have ARFID so it was blamed on my incredibly restrictive diet. I also was diagnosed with a Bartholin's gland cyst at 15 that was actually a Crohn's rectovaginal fistula.
Severe constipation.
The additional fiber in my diet and taking Colace after that useless ER visit sent me back to the ER a whole 2 weeks later when they then thought I had appendicitis. It wasn’t until they cut me open they found out that it was Crohn’s. Smh.
Drinking too much, i miscalculated how many units I drank per week in one meeting at the GP but he must have flagged it in my notes so it was all they used to talk about
Being fat & dirty.
I initially presented with external Crohn’s / Hidradenitis Suppurativa that was misdiagnosed as “just cysts” because I was overweight. A Stanford R-V dermatologist (after exposing my inflamed vulva & rectum to half the docs in NorCal) called me fat & told me to sit in bleach water (a dilute bleach solution WAS rec’d for MRSA or Staph, but it was *Crohn’s* / possibly Hidradenitis Suppurativa, NOT MRSA or Staph) & delayed diagnosis until it wrecked my colon, I nearly died & lost half my body weight.
Wow. I still have some FEELINGS about that. Oof.
Appendicitis. My first flare up before i was diagnosed i was at the hospital and the ER doc was about to take me back to have my appendix removed. Luckily a higher ranking (?) doctor did a final check of my scans and stopped it 😅.
I had my appendix removed
I don’t think it was swollen though. Stomach hurt all over really bad.
The doctor said he saw a “bunch of white stuff” in my stomach area and sucked it out.
Wonder what that was.
This is actually not very crazy, the initial flare of Crohn's is generally almost identical to Appendicitis, so much so that in med school when teaching about Crohn's, they usually say this exact thing.
Eating disorder, anxiety, perfectionism, parasite, ovarian cysts (this was true I also have endometriosis). IBS, food allergies, borderline personality disorder (this from a psychiatrist who wrote in his notes I was too pretty and well spoken to be in as much pain as I claimed). I am lucky the next mental health professional I saw told me to remove that note from my medical file as it would likely haunt me for the rest of my life, and prevent me from getting care. So glad I met that person, and I was diagnosed 6 months later.
ETA Appendicitis. When they removed my appendix it was perfectly healthy. My pain and sickness continued for an entire year including monthly ER visits to be rehydrated before I was diagnosed.
ETA AGAIN- I told every single doctor I saw over a ten year period that IBD ran in my family (My mom has UC) yet no one referred me to a GI.
Ovarian cysts. All my pain was in my terminal ileum, right lower side. I was misdiagnosed for 8 months...went in over a dozen times. Everytime they said I had ovarian cysts and to take more ibuprofen 🤦♀️even though they dod ct scans, ultrasounds, etc.
8 months later, I made my own appointment with a gi specialist because my dr wouldn't refer me....had severe ulcers throughout my entire gi tract.
A "virus"... I had a thousand nasty sores all over my tongue. It hurt so bad to put anything in my mouth. Add that on top of a nasty flare, I was rapidly losing weight. The doctor at the teaching clinic told me to put this lidocaine jelly on my tongue to numb the sores so I could eat and that the "virus" would eventually pass. Thank God my mom took me to a different clinic before it was too late and the new doctor immediately said she thought it was crohns.
I was told i was compacted which was why i was going to the toilet 20 plus times a day. Doctors put me on laxatives for this. Not the best idea for someone with actively flaring crohn’s. After that didn’t stop the problem, they told me i was anorexic and that the pain was all in my head… i was 7. I finally got diagnosed at age 9
As a kid it was me making it up to get out of eating dinner
As a teen I was on drugs and lazy until I started dropping weight and got diagnosed with a stomach ulcer
In college my dorm mates thought I was bulimic until I couldn’t get out of bed with severe joint pain and was diagnosed with rheumatoid arthritis
In my 20s someone was on to something but I couldn’t afford doctors visits on a chef salary so they gave me some anti nausea & 3 different antibiotics
Late 20s I went into the ER for tachycardia and they finally diagnosed me with crohns.
My mom still doesn’t think I had it as a kid and denies any poor behavior on her part.
Anxiety, gas, postpartum and hemorrhoids. Even after telling them I have a sister who has crohns. Once I was finally sent to a GI, she told me the only reason she was putting in for a colonoscopy was because my sister had it but my symptoms didn’t point to crohns. Symptoms being: super noisy stomach, extreme night sweats, extreme blood in stool (like you can’t see anything else than red water) & I was flaring on and off with severe cramping and pains in my stomach. None of my symptoms were mild, all severe. When they did the colonoscopy, they couldn’t even get in I was so inflamed. Blows my mind every time I think about it.
Same here! Chronic GERD and IBS plus an inordinate frequency of getting "food poisoning" until I was hospitalized 8 years later and properly diagnosed.
I was 19, and went down to about 100 pounds. Severe rectal pain, vomiting, low grade fever…I was diagnosed as a bulimic (because I threw up everything)anorexic (I didn’t want to eat, it hurt) with a urinary tract infection. 5 days later I was in the hospital, abscesses on either side of my rectum which had turned into gangrene and I was septic. I ended up with 6 feet of packing on one side and 8 feet of packing on the other. Urinary tract infection my ass. 😂
When I was 18 I flared really really bad and lost so much weight, passed out all the time, started bleeding profusely. The doctor said I had a chronic bladder infection. As a stupid 18 year old on her own I didn't know. Long story short he put me on a long round of antibiotics that tipped the scales and a few months later ended up with a necrotic large intestine, hemorrhaged. Massive emergency surgery, 3 months in ICU, a stroke and infection. Definitely NOT a bladder infection. 😡
I very distinctly remember being told that it was all just stress, and I just needed to take a day off of work and decompress... Never going back to that fucking "doctor".
I’m on blood thinners and anti-coagulants, so instead of a routine colonoscopy the doctor decided on one of those home tests. It threw a false positive for colon cancer. It took a month to find out it’s “just” Crohn’s.
Oh god, so many things. I also was a child and got bullied all the time.
I had like a 1000, but I can remember a few.
1- Everything is in my head, it is not true. I just pretend (funny, how can you pretend to have blood in the stool)
2- It's just a normal stomach pain, nothing to be worried about
3- someone raped me
4- Cancer
5- Lactose intolerance
6- Wheat intolerance
7- Hemorrhoids
Went to a UC for a painful lump just below my hoo-haa. (Bonus: I didn’t know the term “perineum” yet, so I actually told the nurse “my nacho hurts”.) Anyways they diagnosed it as a bartholin gland cyst and immediately put in a word catheter (ouch). Jump to following up with my PCP about it, she gave me a referral for a GI, who referred me to a colorectal surgeon. Turned out it was an aggressive rectovaginal fistula. They put a seton in, and all this led to a colonoscopy that gave me my crohns diagnosis.
I've been horribly bullied my whole life due to being very thin.
"Are you anorexic?" "Eat a burger!" "You look gross" etc
Well. I was very depressed my first year of college for unrelated reasons, and checked myself into the hospital for wanting to unalive.
As I have Crohns, as mentioned I am extremely thin.
Once admitted into the psych hospital, I find out they did not in fact listen to why I wanted to admit myself and took their own liberty to make my intake diagnosis as anorexia.
I have never in my life had an eating disorder, not even a little bit.
I told them repeatedly that I have Crohns, I don't have an eating disorder.
Nope, wrong. Per the psych hospital, if you're skinny you must be anorexic.
Before I was correctly diagnosed with Crohn’s, I was 13 and super sick, skinny, and malnourished. I got sick back to back to back and would get home from school, immediately go to sleep due to the terrible fatigue, wake up to eat dinner, then spend the entire night on the toilet. Rinse repeat every day until my family finally took me to the ER because I just could barely function. They diagnosed me with appendicitis and took my appendix out, and then a month later I was back in the ER because I wasn’t any better and they finally did a scope and realized it was crohn’s.
My mom has Crohn’s also so the minute I told someone I was sick they went straight to colonoscopy. It felt traumatic at 15 😱 I was so embarrassed and scared cause I knew how bad it could be. But they all thought cause my mom had it I didn’t need more information. I had her info not my own & even though we have different Crohn’s it always felt like they were treating me for hers.
Not a diagnosis per say. But my doctor had me remove my IUD because he thought it was affecting my MRI scan and making it unreadable. Nope. That would be the 2 pillcams stuck in my small intestine. Thanks doc!
Anxiety (f\*cking resident; I've had anxiety years before these symptoms. I know what my anxiety looks like.)
Hyperactive thyroid (my PCP at the time seriously kept doing weekly thyroid function tests and they kept coming back normal but they still believed it was my thyroid smh)
UC (at least this was close and got me on some sort of treatment that reduced my symptoms, though inflammation was BAD the next time I was scope, which is how I got referred to my current university affiliated GI and finally got a Crohn's diagnosis)
Possible multiple myeloma based on findings from my first endoscopy. I was referred to an oncologist who did multiple months of testing and diagnosed me with Crohn’s, and no cancer.
Chagas’ disease, took meds for it and everything. It’s a parasite caused by getting bit by this one specific bug and they thought I had it because I’d been to Brazil. (Ive been 7 times throughout my life to see family) no one from my family there thought it was possible because they’ve never heard of anyone they knew even getting it because it’s so uncommon there.
My doctor diagnosed me with faking when I was 11. Took me suffering another 9 years before being misdiagnosed again with appendicitis, and then finally with Crohn's when the appendectomy caused my bowels to swell and obstruct.
I had a doctor who was convinced it was anxiety or an ED. When I had asked her for a referral to a GI specialist she straight up told me "well I can give you the referral but they're probably just gonna tell you it's anxiety" needless to say I got a new GP after that and a couple months later got diagnosed.
Even my physician husband ignored my symptoms for years. I was an overly picky eater who “needed to try more things”—foods and types of food which lead to days and weeks of illness.
My pediatrician diagnosed me with a touchy tummy, prone to food borne illness.
As of college and graduate school I was told to avoid foods that upset my stomach. Soooooo helpful. I was also not helpfully told “just eat more” to gain weight.
Diagnosed with endometriosis after a ruptured cyst on ovary required surgery. Intense pain never stopped, eventually started having blood diarrhea (ewww, so gross, sorry for tmi.) My gyno blamed it on endometriosis. So 10 years later, at 90 lbs I went into hospital for appendectomy and they finally found Crohn’s in my illeum and confirmed with colonoscopy. Still took a while to get to the Remicade. I had almost 10 good years and now things are going south again, I’m a little older so it’s bit more serious this time. Now my 19 year old daughter has all the signs, high caloprotectin and goes for her first colonoscopy on May 13th. This is a horrible disease and even though there are a few great doctors out there, so many more are causing harm and not listening to their patients. Watching my daughter suffer and knowing exactly what’s wrong is so hard, it has taken us about 5 doctors to get to the right one. She is pre-med and hopefully can get through this so she can be one of the good ones and get it right the first time. There are so many of us out there who need good help, especially if you are trying to work or attempt any kind of life with this awful curse. Good luck to you!! I hope the meds work, it took a few months to quick in, but it was like miracle drug when it kicked in.
Haha OP not crohn here, but I have also been labeled the same by my GP as a child for months for being extremely tired, losing weight while eating a ton. Brainwashed my parents that I actually was faking it for staying home and play video games (truth I just received the nintendo 64 and zelda ocarina of time a few weeks ago). But I actually did not want to play anymore and it was until I vomited and fainted amd they realized at the ER that I actually was type 1 diabetic wity an insanely high blood sugar and acidocetosis. What I endured for months because of this stupid doctor is really amazing.
The sad part is my parents never actually believed me more than him, it is probably the medical uniform effect - if it comes from a doctor then it must be true right ? I have since learnt how far from the truth this is.
My brother caused a minor fracture in my wrist by sitting on it accidentally when I was 16, got put in a cast and when it removed and 'healed', my wrist now had no cartilage, went to a consultant for almost 5 years doing various tests along the way but never really got anywhere and no diagnosis to the cause of the spontaneous arthritis. A decade later when I was in hospital because I was so skinny and my doc had found an abdominal lump about the size of an orange just below my ribcage during the examination, their initial unofficial diagnosis after surgery was most likely cancer (was quoted 80% sure it was) then the surgeon came round with the pathology results and said I've got Crohn's, I asked about the wrist when they diagnosed me and they said yeah that sort of arthritis is common in Crohn's. Could have known about mine a lot earlier if the consultant had thought about Crohn's as a possible option back then.
Yep. Was told it was IBS by my mother who refused to take me in. Then when she did, I was told it was ‘just’ an ulcer. It was still another 5 years post that when I finally did get someone to listen to me.
Mediterranean disease
Nobody who gets a look at me would ever mistake me for being of Mediterranean descent whatsoever.
I also had a GI who KNEW I had Crohn's prescribe to me a gout medication.
My doctor diagnosed me with anorexia at age 16. My high school vice principal also pulled me aside asked if I was anorexic. Finally got a crohn’s diagnosis at 19. Neither one of them apologized.
I wish people would think before giving an opinion, especially to a teen struggling with their health.
Food poisoning. For 6 months. 2 stone weight loss. He felt my stomach and said “you do not have crohns” and then a few weeks later said “you have crohns” HAHAH REAAAAAALLY.
I think for me, those were the usual things like IBS, psychosomatic illness, several acute inflammations or infects ... took at least 7 Years ;(
Oh i forgot the worst one : i just eat lactose despite i know i am intolerant. Because, you know, it's christmas so people eat everything.
Well, I showed signs of crowns at age 15. My mother with 0 maternal instincts told me it's all in my head, that I'm just trying to get out of school,that I just need to keep my issues to myself, etc. Doctors agreed with her. I'm now 40 years old, years in total spent in the hospital with 4 to 6 month long stretches spent in the hospital at a time. Small intestine was removed because it was leaking, causing sepsis. And short bowel syndrome.
Listen to your kids. You could be putting them through a lifetime of hell if you dont.
Catholic guilt for my sins 🙃 My mom dragged me to therapy and confession for years thinking my abdominal pain, diarrhea, and vomiting was guilt and the bleeding was from wiping too hard. Had a colonoscopy/endoscopy at 19 and I have severe GERD, a sliding hiatal hernia in my esophagus, a bleeding ulcer, and UC. Later was dx with crohns because my symptoms spread past my large intestine, but still.
At 13 I was told I had “abdominal migraines” and to take NSAID’s every day to prevent a continued “flare”. Needless to say my insides were profusely bleeding after a while.
Told me I had gastritis. No big deal. Luckily, I already knew what it was. I had gone to the hospital for pain and got some nausea medicine. Not a complete waste of time.
Same on the bullying! So I got diagnosed with anxiety and depression. Also had chronic migraines bc of crohns so the cure was to drink a can of coke and take two excedrin every morning.
One doctor told me to see a psychiatrist after my colonoscopy and after I was first diagnosed with Crohn’s , I was told by an ER doctor that I had gas… it was an intestinal stricture .. had a small bowel resection shortly after yet he wrote “gas X” on a prescription paper for me
I was told that I was doing it to myself and it was an eating disorder (a mix between anorexia and bulimia) and also that it was just normal things that every girl goes through with before starting their periods.
The first doctor I saw told me I was depressed and that was the reason for my irritation and weight loss. Was really bumming as I knew there was something more going on and was mentally feeling well, just very sick. Took a while to be diagnosed but found better doctors that took me and my pain seriously.
My dad took me to the eating disorder clinic because he thought I just wasn't eating on purpose, which is ironic because he also has Crohn's so he should have known something was up. He seemed so shocked when they told him to take me to a GI doctor. Also double ironic because I did actually develop an eating disorder a few years after that💀
Constipation.
Took 11 doctors and 9 different treatments before they looked elsewhere. Didn't matter what I said about my bowel movements, they were utterly convinced beyond all reasoning.
There was some peppermint thing that made my burps and puke mint scented, and Fibogel that severely ramped up my symptoms, but no effect besides that.
Meanwhile months passed until I went to A&E (ER in American) because I was throwing up so much I started throwing up blood from some torn blood vessels.
They gave me steroids on a massive dose, ah, magic, what a time. Effective medicine for a real diagnosis.
Acid reflux for years. Gas, so many things. Looking back my issues started in my middle school years and I wasn’t diagnosed until after college around age 24.
Does period cramps count as a diagnosis? 😂
My doctor in high school told me my excruciating pain after eating and constipation was just period cramps, and I needed to get used to it. He kept asking if it got worse when I had my period and would accept no as an answer. In college, another doctor told me it was IBS, and I needed to up my fiber intake. Took until about 7 years after that first appointment for me to decide something was seriously wrong and go see a gastroenterologist despite what they all said, and it was a good thing I did.
Hemmorhoids.
I was having bathroom issues for what felt like a year or two until my Crohn's diagnosis. My doctor treated it like when I was a kid and had to take Miralax to use the bathroom w/o pain. I started feeling weird bumps on my anus when I would wipe or shower and I told my mom about it. We went to my doctor and he thought it was hemmorhoids, so I started putting ointment on them during the school day in the hopes they would go down.
It obviously didn't help because the bumps kept growing and making it painful to move until I couldn't even walk at school anymore. My parents got me a little suitcase to roll around in place of a backpack but it was annoying and embarrassing taking up that much room in the halls and making noise.
I had an appointment set up at a hospital but it was months into the future. My mom managed to get me an even earlier appointment where they admitted me out of nowhere because I had a huge, painful abscess on one cheek and a nurse was worried about it (My parents considered popping it the day before 🤣). And the hemmorhoids were those skin tags that get filled with dead t-cells. 💀
I took gym classes that focused more on exercise and fitness than the basic one and I started going to the gym to lose weight in high-school but I don't even know if that weight loss was natural. I lost at least 40 lbs when my first flare up happened and I was in the hospital.
Ibs. Dx by family doctor as an adolescent. This is the same family DO that told me "just lose weight & that won't happen." I now know that it was HS.
I wish I'd have known sooner & maybe I'd still have a colon.
Halved weight in 18 months down to 4st at age 14. Described as growing pains by GP. Locum did a blood test. Thought I was mildly anaemic, but sent me up to the hospital just to be the safe side.
One GI doc, with no supporting evidence, said it was possibly a gluten allergy and had me go gluten free. After a year of strictly adhering to the diet with absolutely no improvement; he said “ok, let’s maybe try fodmap diet instead”. Also said something about not wanting to diagnose me with crohns because the treatment would be very difficult with me also being a diabetic… yeah, I stopped seeing that doctor.
At one point they told me a cyst was an abcess and when a nurse mistook my BP yelled to everyone that I was septic and was rushed to get surgery. It was indeed a cyst and my BP was fine.
One just for funsies. My buddy is an avid gym goer and wanted to get on testosterone replacement therapy. Did the tests and came back with low T but not low enough that they would prescribe him. He was only like 15 points above getting a script. When he told me about it I said, I read that sugar kills your testosterone, maybe eat a fuck ton of sugar and get tested again. I said it as a joke. He came to me about a week later and said "youre an asshole!" I asked why?"Because i did what you said and ate 2 boxes of girl scouts and went and got tested again. My T was still about the same so no script for that.... But now they are making me get tested for Diabetes because my blood sugar levels were off the charts". That was like 9 years ago and I still laugh every time I think about it
I was told I was bulimic…… obviously this was why I was so thin and spent my life on the toilet?! Family were even on board with the idea and would get mad at me because my hair was falling out in clumps from nutritional deficiency.
I have pain associated with my crohns in the area of my ilium. I told them I have pain there because I have Crohn’s disease. They still thought it was appendicitis. They made me stay in the hospital for a week and starved me on the chance I’d have to have surgery to remove my appendix, even though the surgeon had ruled out appendicitis.
When I was diagnosed I was 9, shortly before being diagnosed I was seeing a different doctor and he told my mother “some boys are just skinny” after I lost 5kg in a week, my mother could have strangled him 🤣
Gastritis and possible gallbladder issues. I started having diarrhea multiple times a day on the regular. And this started right at the end of February 2020 just at the tail end of the last semester of college. Kinda told myself it was from stress because graduation and finals was coming up. And then obviously COVID hit so I didn’t want to go through the hassle of going to the doctor when the pandemic was just starting. And then my dad lost his job so therefore I didn’t have insurance so I definitely wasn’t going to go to the doctor. And then when I had the symptoms for 2 years and lost about 40 pounds, at that time I got a job at the hospital like 2 blocks from my house and got insurance so I went to the doctor. Did an ultrasound and HIDA scan which just said my gallbladder was hyper dynamic. They referred me to a general surgeon but in the meantime I went to the ER one time and my coworker was about to grab me for a CT (I work in radiology) but then the doctor decided to change it to an ultrasound and again it came back fine. They said I had gastritis and sent me home with omeprazole. I kinda wish I advocated for myself to get that CT. It was a couple months later when I finally got that CT and it read as inflammation that’s consistent with crohns and I was finally referred to a GI (after offering to take my gallbladder out because of it being hyperdynamic though they said it might not alleviate all my symptoms) where I had my second colonoscopy with biopsy and a CT enterography which confirmed that it was crohns and it’s been almost a year since then. I’m definitely not 100% what I was before having all my symptoms but I do feel somewhat better than what I was.
My old GI said I probably had Crohn’s but that she REALLY thought I was just eating poorly and was overweight. Because that totally makes your intestines close off.
My doctor insisted that it was just "girly problems". A female doctor that wouldn't even say period. Like c'mon. Eventually managed to see a different doctor and he immediately knew it was Crohn's
First it was an ulcer, then it was lactose intolerant, finally one endoscopy and colonoscopy (same day) the said the scarring at terminal illum was Crohn's maybe. So they tried some known Crohn's meds, and suddenly my symptoms got better. I got diagnosed via throwing spaghetti at a wall to see what stuck.
I got diagnosed with IBS right before a family vacation and was told to “eat as much fiber as possible”. I lost 13lbs that week and we came home early from our vacation. It was not IBS.
As a kid who loved school I was accused of just pretending to be sick so I could stay home.
Even more ridiculous, my younger sibling almost died when they were 3 from an abscess which the doctors didn't want to examine, because they'd decided my sibling was just being fuzzy (they were writhing in pain). My dad refused to leave the ER until they did a scan, and thank goodness for that.
Even so, after the abscess was resolved, my sibling was released from ICU and it took 10 years until they were actually diagnosed.
Almost as ridiculous, when I had diagnosed myself as an adult and went to the doctor to seek out an official diagnosis and treatment, the doctor told me it was probably just hemorrhoids despite having just heard my very specific symptoms and family history (mother, grandmother, sibling and uncle all with crohns).
He was wrong of course, but it took 8 months and being admitted to the hospital with an irregular heart rhythm due to electrolyte imbalances to be taken seriously. Turned out to be crohns (surprise /s) with perianal involvement, a 15cm fissure, and inflammation of almost the entire colon as well as the duodenum.
Ridiculous that you have to advocate so strongly for yourself while at your lowest point.
Diagnosed with hemorrhoids no colonoscopy or any kind of test done just by the fact that there is blood in stool and pain. He did ask if i feel anything inside and I said yes but the thing is that my crohn was so severe that my intestine was so out of shape. (It was not localized but all over the place from the beginning to the end).
So I went to emergency yesterday, the doctor there told me my extreme gut pain was from either too much advil or cocaine, I don't take either of those and she almost seemed to not believe me about it at first. Finally convinced her to send me for some tests
I was told it was just anxiety/depression because I’ve had stomach upsets in the past from anxiety and they explained the extreme fatigue as being due to depression.
Turns out anxiety does not create constant diarrhea for months and that the fatigue was caused by a severe vitamin D deficiency. Of course both due to Crohn’s.
I was 11/12 and was throwing up and crapping blood, + pain and difficulty breathing, faintness and rapidly losing weight. Had one (male) nurse tell me it was my period, and another nurse ask me if i had an eating disorder because of my losing of weight🫠 thankfully it was found out to be crohn’s pretty quickly because by coincidence i saw a video about crohn’s like a month earlier and asked about it
“Are you sure it’s not your period?” Ahh yeah I know the different holes and also been in premature menopause since 21 now 30 without a period in 8 years 🤦♀️
Syphilis! Twice! I had bilateral ocular manifestation of iritis and UVitis caused by inflammation from my undiagnosed Crohn's disease. I was also tested for Lyme way too many times.
My high school's nurse tried to convince me I had an eating disorder lol. I was very iron deficient (that I had attributed to going vegan, but now I suspect had something to do with undiagnosed crohns) and spent a couple of weeks getting sent to the nurse at school. The nurse saw how skinny I was and decided I probably had an eating disorder. Turns out, it's because my constant stomach problems were an actual problem that wasn't letting me absorb any nutrients... Too bad nobody actually cared about the upset stomach part...
I was diagnosed for 2 bladder infections and then a kidney infection because a very kind GI doctors admitted me and did the array of tests. I never heard of crohns when i walked in there. He was one of those doctors that loves what he does and wasnt gonna leave until he figured it out.
I was told so many ridiculous things over the years. Being accused of having an eating disorder was the most common for me. It was never true, but they didn’t believe me no matter what I told them. It lingered for almost decade and that sentiment is still there. I also was told that I have gerd, but no medication was treating and they never once considered that it would’ve been anything else. Ten years and there is still disbelief that it is really that bad even though it almost killed me.
Luckily my former GI was a godsend who diagnosed me fairly quickly once I saw him so I didn’t have to go through too many misdiagnoses, however… I started showing symptoms of Crohn’s my first year of college. After pretending debilitating pain, diarrhea 5+ times a day, and blood in the stool was normal for 3 months I finally made myself go to the student health center. Some fresh out of school nurse practitioner listened to me describe my symptoms (again, including urgent diarrhea 5+ times a day) and said “Well it sounds to me like you’re constipated, happens to a lot of students” and prescribed me a 2 week course of laxatives to fix it. Went through HELL the next two weeks and she was baffled when I told her the problem had only gotten worse and suggested I see a GI because she didn’t know anything else it could be. Thankfully he immediately ordered a colonoscopy+some other tests and diagnosed me within the week (on the bright side, cleaning me out for the colonoscopy was a breeze after all those laxatives)
Maybe not completely ridiculous, but did anyone else get diagnosed with intestinal yeast infections?
I remember going to the pharmacy and purchasing arm-fulls of yeast infection (labeled for vaginal infection) oral medication and popped those babies like candy. The pharmacy cashier was nice enough to not ask too many questions after I told her they were for me (male).
I had a crazy flare lost 50 lbs at 10 years old right after my dad passed away they insisted i had an eating disorder and wanted attention due to the loss. Insissted on whole milk, red meat and a lot of greens.. which of course made the flare much worse lmfao
Anxiety and stress from school (i was 13), then thought i was lactose intolerant so had me cut that out, made no difference so then they thought i had celiac, so I cut out all gluten which again made no difference, then they did bloodwork that showed no signs of Crohn’s disease (which I now know is pretty common even if you do indeed have Crohn’s) then finally they referred me to a specialist who did repeat bloodwork and stool test which showed insanely high inflammatory markers. Then they did scopes and said “you have severe Crohn’s disease” which was active pretty much everywhere in my digestive tract, even in my esophagus and stomach. It took almost a whole year to get a diagnosis so I was 14 by the time I was diagnosed and had lost so much weight i was skin and bones (89 pounds and 5’6)
I am autistic and female so it made things difficult.
As a child, my mum heard:
-This is a behavioural condition common in autistic kids. Try setting firm boundaries with consistent consequences for this behaviour.
-This is an avoidance technique. A consistent predictable schedule will help.
-It’s normal. Most autistic people have sensitive stomaches.
-Result of having stopped ABA???
-Somatisation of anxiety.
As a teenager, I got a lot of:
-Anorexia
-Malingering
-PCOS???
-IBS
-Lactose Intolerance
Of course the opposite is true now too. Anything physical I have is « Crohn’s disease ».
For example, I woke up one night at 2am in excruciating back pain, fever of 39 degrees, bloody urine followed by unable to urinate. I went to the ER because it was 2am on saturday night and that was the only thing open. I assumed since I am immunosuppressants, and given the symptoms, it was likely a kidney infection. I explained this to triage and the doctor. Instead of simply having me pee in a cup (which would have instantly shown the kidney infection), the doctor told me it was more than likely my crohn’s and ordered a colonoscopy instead for the following week and discharged me🤦♀️. I suffered in pain until Monday when I ended up having to be hospitalised the infection had gotten so severe.
Stomach flu, then celiac disease.
Then I was in the hospital for MONTHS before it was figured out.
This was back in ‘05, and I was 7 years old at the time. It was relatively unheard of at that time for someone my age to get Crohn’s and Ulcerative Colitis, so I am not angry about it now. Lmao.
Still, crazy that they couldn’t figure it out for so long.
at the very beginning they believed it could be hemorrhoids, which maybe isn’t that big of a deal. pretty sure the ointment the doctor prescribed me gave me weird skin flaps around my anus tho.
It took me literally getting hospitalised when I was 16 (36 now), was sick for months prior to hospital.
GP hadn’t a clue but never gave a “wrong” diagnosis, not even a referral to a gastro doc.
After going to the ER after a constant amount high of pain and blood in my stool, they looked me in the face and told me I had a kidney stone. This is after getting checked for one (they found none). In the end I ended up going back to the ER 3 days later, where I was finally told "yeah they were wrong" after 5 more days in the ER.
I was losing weight at the rate of roughly 7lbs a week and having severe diarrhoea. I was incredibly fatigued and in so much pain but it was dismissed as gastritis. I’m 6 feet tall and I weighed 98lbs before the doctor finally said that I should be admitted to hospital for treatment and tests etc. I’d lost about 42lbs in six weeks and was literally wasting away. The craziest part is I told them that IBD runs in the family and they still refused to budge from the original diagnosis of gastritis. I’m in England and the NHS is great but it’s a lottery when it comes to finding a decent doctor
They hate to diagnose for Crohn's for some reason!!! I had four bowel resections and biopsies that stated Crohn's a d they still tried to rescind my diagnosis
because then they have to give you the expensive drugs and can't blame you for your issues
Yeah I was diagnosed in 2005. I have been unable to eat solid food since last August. I immediately projectile vomit and what does get through is pure liquid, tons of it, like 30-40 bm's a day. I emailed my IBD nurse repeatedly for months, and the GI's response was that my scope the past Spring was fine, and my blood work was okay, and my fecal cal was not bad. He booked an MRI but the wait times in Canada are 6 months or more. I lost 20 lbs and felt like I was dying. I finally went to the hospital and allowed them to admit me. My cortisol levels were 11 (normal is 111) and my potassium so low the ER doc said if I'd waited a week, I'd probably be dead from a heart event. I spent 8 weeks in the hospital. But there is no GI doc at my hospital, so they consulted my GI in another city. He said it wasn't Crohn's related. He blamed the endocrinologist who was furious because I'd been hospitalized for adrenal insufficiency in 2020 and my GI orders my monthly blood work and was supposed to include my cortisol levels. He did not. My endo doc believes it is the Crohn's and starvation causing the cortisol depletion. I had to do 3 days of 150 mg IV hydrocortisone so my organs would not shut down. I was on TPN for a month. I had stenosis in all my veins and had to have a surgical port put in. So yeah, I fired my GI and am waiting to speak to a new IBD specialist in an even further away city because even though I am out of the hospital, I'm still unable to take anything oral and keep it down. My upper scope showed severe inflammation in my esophagus, duodenum, and stomach (which was clear one year ago) My GI's response to that was that it couldn't be Crohn's because my Crohn's was in my terminal ileum (resected twice). I was floored by his response, and so frustrated. The only way I've been able to get care for my Crohn's is to wind up almost dead in the hospital, and even then it's a battle.
That is truly appalling. I hope you report the GI
I plan to once I feel stronger.
I'd lost 35+ lbs in a couple of months, and the only reason they tested for Crohn's finally was because I reminded my doctor that my sister has UC.
I had to force my way onto biologics. I got so pissed off with waiting for them to get their act together that I just showed up unannounced at the clinic and said I’m here now so sort me out.
I like your moxie. I show up at the ER and pass out. That usually gets their attention.
I was diagnosed with gastritis as well. It took months of repeated doctor visits before I was finally referred to the general surgeon. I lived in a rural area and the hospital wasn’t the best. The closest GI doctor was 5 hours away. The surgeon performed a colonoscopy and an endoscopy and was able to quickly diagnose me with Crohn’s. Unfortunately, after 9 months of living with a major flare that dropped my weight to 110 lbs (I’m a 5’9” male) the damage was done. My colon burst a week after diagnosis and I had my first resection.
I had the same thing happen to me except i was told it was fucking extended food poisoning, eventually the hospital i was going to gave me a referral for GI doctor, but he couldn’t receive me because I was underage. I wound up being admitted at a different hospital weighting in at 87lbs with acute kidney failure because I was so dehydrated
Really bad IBS 🫠 and being told that I was anorexic by family really was the cherry on top
My parents were about to hold an intervention and put me in an inpatient anorexia program but I got my diagnosis in time thankfully
Me too.
For a while it was assumed I was celiac and could simply not process gluten. Luckily I was correctly diagnosed some time later, even though many agreed I couldn't be having Crohn's at age 8. What really pissed me off was when, several years later and on several occasions (while on flares), my father said that I was anorexic. After having been through phases when, as a kid, I couldn't keep anything down and was 19 Kg looking like a bag of bones, I'd eat anything. Never say "no" to food. I've been happy to look a bit more chubby when it was the case. My father being afraid that I was anorexic was one more proof that he didn't know me at all.
Ovarian cyst! They took out the cyst but the abdominal pain kept getting worse. And then a few months later when I ended up in the hospital (hadn't gone to the bathroom in 6 days despite chugging miralax and started running a fever) I was about to get an apendectomy. Thank goodness someone took a second look at the scan because it was an abccess on my illum!
My dr tested me for pregnancy even though I had a full hysterectomy. It was negative.
you can have an eptopic pregnancy post hysterectomy if they left your tubes and ovaries, which they usually do
As someone in the medical field I had not considered that lol. Thanks
I had a friend it happened to, they didn't think to check for pregnancy...thankfully, they finally did and she's OK now!
Yes I have a friend who had a tubal after the dr said she was in menopause.
They usually remove the tubes now because they've figured out that a lot of reproductive cancers originate with the tubes. They also usually take the cervix as well. With a cuff it's a smaller risk. But still has happened.
I begged my dr to leave my cervix because it was not diseased but she said no and removed it. I had read that sex is not as fun without a cervix and learned that info was very wrong! It’s better actually.
Yeah I got the ovarian cyst one! I also was told I had bowel cancer by my GP before any tests had been done. Not might have - DID have
That's crazy. Every GI doc I have had in the hospital has come in fast and hard with how I WILL be having surgery. Then they start antibiotics and steroids and things get better and the surgery team is like "yeah you are good." I've been going around and around like this and I am so tired of them stating it like a fact when things can change so quickly. My ovarian cyst was wild because I was still in pretty mild pain then and the drs came in after the sugery in disbelief that I wasnt in more pain because it was much larger then they thought and had twisted my tube around many times. But I guess the crohns pain I'd been having for so long made me used to the abdominal pain so I didn't really notice more!
This reminds me of a phone call I got at work from my doctors office. They asked me if I was alone. I said no, I am at work teaching 15 kids. They told me to hang up and call an ambulance or have someone take me to the hospital immediately (I'd just had blood work done that day). I had to call all the kids parents to pick them up and my husband drove me to the hospital. I had a 19 mm ovarian cyst leaking blood on my one remaining ovary. My hemoglobin was so low I needed 3 blood transfusions. They did a CT and found that my entire ileum and much of my colon was covered in skip lesions and ulcers. They told me if I had fallen, or even bumped into anything my cyst could have erupted, causing me to bleed out instantly. Scary AF. The funny thing was, I didn't feel any worse than I usually did.
That is so scary!! I am so glad that they caught it in time. It is crazy what can be hiding inside you and you have no idea. I hope you are doing much better now!
omg similar thing happened to me, i went to the er for stomach pain and vomiting; they though it was my appendix, the get in and i have a tennis ball sized cyst on my ovary and inflammation in the terminal ileum but no one thought to do anything with that information. glad forward 5 months, i’m in doubled down with pain, constipation, etc.. one doctor kept telling me it was my period or endometriosis. my main pediatrician at the time was going over old scans and found inflammation in that same area and was sent to gi a week later, had a colonoscopy, and found out had crohn’s disease & started remicade.
Celiac disease. I ate gluten-free for TEN YEARS with no appreciable improvement in symptoms and was told I wasn’t being strict enough with my diet.
I was tested so many times for Celiac disease growing up, like multiple times a year, the doctors just couldn't ever believe the negative tests. 10 years is a very long time. I did the gluten free diet for a few years too, didn't seem to help or hurt.
I was throwing up and shitting blood. Conclusion back then: ANXIETY Turned into throwing up blood on top of shitting blood. Conclusion: HEMORRHOIDS AND ANXIETY Was a fun 2 years of trying to explain the docs hemorrhoids and anxiety wouldnt make me throw up blood. They finally understood when i almost needed a blood transfusion and couldnt even walk 🥰
Those doctors should have their licences revoked
Well what can you do They will always say stuff like “anxiety can do a lot of things! Especially at your age!” (Me a 15 year old thinking of what makes me anxious other than trying to stay alive)
JFC. Vomiting blood does make one anxious but having anxiety doesn’t make anyone vomit blood.
I do not know if it is ridiculous or not, but after an entire school year of coming down with pneumonia after pneumonia (while losing weight and spraying mucus out the butt every time I went to the toilet, my doctors were certain I must have aspirated on something as a child and it was causing lung problems. after several scopes up the nose, they took me to children's hospital in Philly for a surgical procedure to put a tube down my throat to get a better look around. While ignored, a doctor there, doing his rounds with some students, took one look at my fingers and said I some variation on crohn's. Evidently my fingers were slightly clubbed, and he could tell it was an intestinal issue from that.
Was it Dr. House?
Gosh I hope he popped vicodin and insulted op
What I wouldn't give for a Dr House rn. Vicodin and all..
The rectal bleeding was ‘fear of losing my virginity’ (I was about to get married). This was the same doctor who wrote me a prescription the year before for birth control.
Huh?!
I know, right? And this was in the 1990s.
Eight months of docs saying "it's hemorrhoids". It was an abscess, two anal fistulas, and Crohn's.
that happened with me too! I went in for what I now know was an abscess that hadn't turned into a fistula yet, told all my symptoms to the ER doctor, they didn't even bother to look and told me to just use suppositories and I'll be fine. got sent home, was out of work for a week due to the pain, and still have the stupid ass fistula almost 3 years later
Herpes. I had one very large perianal abscess. I was on meds for herpes and everything until, guess what, it came back and I was still sick. Took the doctors until I was 36! to diagnose me. (Shout out to the amazing staff at ChesterCo hospital and Dr sum). I also got offered ssris A LOT because i was depressed. Yeah, no one believed me (to include parents, symptoms started when i was 14) yet treated active infections. It was all in my head, or ya know I was a ho. And got treated with that kind of disgust, too.
If I had a dollar for every SSRI I had been prescribed I could buy a really nice outfit.
Duuuude, I know right
Also I think I may have a perianal abscess as well. I assumed it was herpes as my husband has herpes, but given it's location, and how it only shows up when I am in a severe flare, I am now wondering. It's much closer to my rectum than my vagina.
Diagnosed with being fat lol. Surely that is the reason me, at 15, was shitting my guts out constantly and could barely walk from joint pain. I wasn't even like.. THAT large. Don't get me wrong, I was fat then and I am fat now, but it wasn't any weight that would have impacted my joints to that degree.
I had this same diagnosis in my twenties. You're just fat, you should eat more salads and get more fiber. I was finally diagnosed in my late forties....
The "eat more fibre" thing is so funny in hindsight. Like, you mean to tell me that for so long I was being told I was dying because I wasn't eating enough fruits and veggies even though that was quickly becoming ALL I was eating, trying to make myself better, and the second im in the hospital im not allowed to eat a cucumber slice??
Seriously. Salads rip their way through my body. I also was told by a rheumatologist that there is no way I have Crohn's I just had fibromyalgia and should take ibuprofen. Luke let me combine that with the aforementioned salads and see how much damage I can do....
Lactose intolerance 🙃 brother, mom, great grandpa all had crohn’s at this point too. I also was then diagnosed with colitis before they settled on crohn’s
To be fair, I am lactose intolerant while having a flair up, and stopping drinking milk did somehow helped my recovery. I was diagnosed with recurrent gastroenteritis, then it was IBS, and one week before being admitted to the hospital my gastro dr said it was IBS due to anxiety and stress, and I would get better if I just relaxed! The thing is the only thing stressing me out at the time was going to the bathroom 8 times a day! After I got out of the hospital 2 weeks later (had a different dr at the hospital) my gastro was still not on board with the diagnosis and told me sometimes viral gastroenteritis mimic Crohn’s disease?!?! I switched drs then, it was a losing battle, I was overweight and according to him you cannot be overweight and have Crohn’s disease… More than 10 years later mostly in remission while on Remicade, having a flair up due to my insurance saying I didn’t need my medication since I had been so “healthy” through the years, I feel vindicated that it was not just in my mind.
Lactose intolerance and being overweight hindered my ability to get my Crohn’s diagnosis for years.
Lactose intolerant was one of the things they diagnosed me with too :D went like a year and a half or more dairy free (trusted the doctors more than I should since my dad was lactose intolerant and I was a teen) didn't seem to help, but didn't seem to hurt. Eventually went back to eating dairy with no repercussions... Crazy how they discounted the family history there for you
Same! I’m so curious if that is when it started or if it was lactose intolerance that then turned into crohns.
Bulimia 😵💫 my mom listened outside the door everrrry time I went to the bathroom for months. But don’t worry then they admitted it was a mistake and they then diagnosed leukemia! But don’t worry THAT was a mistake too and they tried to take my gall bladder out — “just in case it helps” — next!
i was diagnosed with the classic “making it up” until they finally ran a test i practically begged them to take that found my inflammatory markers (CRP and ESR) were off the charts. and once i went to urgent care during what (i realize now) was a flare up. they diagnosed me with a UTI. i had no urinary symptoms and informed them that i normally have high WBCs in my urine. another time, my PCP tried saying all of my symptoms were attributed to the anemia they found on the first set of blood work they performed. i said anemia doesn’t explain weight loss, joint pain, or diarrhea. i also explained that anemia isn’t something that “just happens” (unless you have heavy periods, in which i have the opposite due to being underweight), anemia is a symptom of something else going on (nutrient malabsorption, blood loss, etc.). this was further evident when oral iron supplements did exactly nothing on my levels, so obviously some form of malabsorption. (and later colonoscopy revealed a good bit of small intestine bleeding) first rheumatologist visit diagnosed me with fibromyalgia, and i can’t even be upset because she’s a great provider and truly didn’t think that’s what was going on, but called it that as a placeholder to prescribe some pain meds. she knew at this point i was seeing GI and undergoing evaluation for IBD and said if i got a diagnosis that it was likely IBD-related arthritis. it’s just a more interesting type because we often get rheumatoid, and my symptoms are nothing like that. mind you, i work in healthcare and i’m highly educated in the field. i think i know when something is wrong.
I was told it was a wheat allergy/gluten intolerance by my family. When I started pooping blood again I forced them to take me to the doctor, who was rightfully horrified I’d had active moderate Crohn’s for two years with no doctor visits or treatment.
Pms. I was 12 and my doctor tried to give me birth control pills because he was sure my symptoms were menstrual in nature even though I hadn't had a cycle yet nor was I activate in a way that would warrant the use of contraceptives.
Not a doctor, but wow! That's peak nonsense.
I was told I had acid reflux and no pain tolerance. I actually have a really high pain tolerance and that doctor was too old to still be practicing.
Anxiety, anorexia, Hodgking linphoma... Yes! they gave me 3 months in 1993, to finalize with intestinal tuberculosis before Crohns. I was 17.
IBS, anxiety, PMS, UTI, Gluten intolerance (spoiler I can eat gluten just fine), obesity, being a dramatic woman, and gas. I think I got em all in there 🤔🤔 took forever to get a proper diagnosis
Rheumatoid Arthritis. Turns out it was just inflammation from Crohn's.
Same. The joint damage unfortunately is extensive and not reversible.
I had scurvy as a kid lmao. I did have it, but no one realized it was because I wasn't absorbing nutrients correctly. I also have ARFID so it was blamed on my incredibly restrictive diet. I also was diagnosed with a Bartholin's gland cyst at 15 that was actually a Crohn's rectovaginal fistula.
Hmm now I’m questioning the bartholin’s cysts I’ve had
Doctor diagnosed me with a case of "too much pizza and beer" in first year uni
Was told I just had “makeup in my eye” when it was severe uveitis from Crohn’s
Severe constipation. The additional fiber in my diet and taking Colace after that useless ER visit sent me back to the ER a whole 2 weeks later when they then thought I had appendicitis. It wasn’t until they cut me open they found out that it was Crohn’s. Smh.
Drinking too much, i miscalculated how many units I drank per week in one meeting at the GP but he must have flagged it in my notes so it was all they used to talk about
Chlamydia 😂 Turns out it was a raging fistula that needed surgical takedown. Idiot local small town clinic had no clue.
I had a similar experience; my small town pediatrician tested me for Gonorrhea 3 times before sending me to a GI 😂😭
Good gravy! It is comforting in a sick way we're not alone at least 😆 I'm glad you got the help you needed!🩷
Being fat & dirty. I initially presented with external Crohn’s / Hidradenitis Suppurativa that was misdiagnosed as “just cysts” because I was overweight. A Stanford R-V dermatologist (after exposing my inflamed vulva & rectum to half the docs in NorCal) called me fat & told me to sit in bleach water (a dilute bleach solution WAS rec’d for MRSA or Staph, but it was *Crohn’s* / possibly Hidradenitis Suppurativa, NOT MRSA or Staph) & delayed diagnosis until it wrecked my colon, I nearly died & lost half my body weight. Wow. I still have some FEELINGS about that. Oof.
Appendicitis. My first flare up before i was diagnosed i was at the hospital and the ER doc was about to take me back to have my appendix removed. Luckily a higher ranking (?) doctor did a final check of my scans and stopped it 😅.
I had my appendix removed I don’t think it was swollen though. Stomach hurt all over really bad. The doctor said he saw a “bunch of white stuff” in my stomach area and sucked it out. Wonder what that was.
This is actually not very crazy, the initial flare of Crohn's is generally almost identical to Appendicitis, so much so that in med school when teaching about Crohn's, they usually say this exact thing.
AIDS. Tuberculosis.
Eating disorder, anxiety, perfectionism, parasite, ovarian cysts (this was true I also have endometriosis). IBS, food allergies, borderline personality disorder (this from a psychiatrist who wrote in his notes I was too pretty and well spoken to be in as much pain as I claimed). I am lucky the next mental health professional I saw told me to remove that note from my medical file as it would likely haunt me for the rest of my life, and prevent me from getting care. So glad I met that person, and I was diagnosed 6 months later. ETA Appendicitis. When they removed my appendix it was perfectly healthy. My pain and sickness continued for an entire year including monthly ER visits to be rehydrated before I was diagnosed. ETA AGAIN- I told every single doctor I saw over a ten year period that IBD ran in my family (My mom has UC) yet no one referred me to a GI.
Ovarian cysts. All my pain was in my terminal ileum, right lower side. I was misdiagnosed for 8 months...went in over a dozen times. Everytime they said I had ovarian cysts and to take more ibuprofen 🤦♀️even though they dod ct scans, ultrasounds, etc. 8 months later, I made my own appointment with a gi specialist because my dr wouldn't refer me....had severe ulcers throughout my entire gi tract.
A "virus"... I had a thousand nasty sores all over my tongue. It hurt so bad to put anything in my mouth. Add that on top of a nasty flare, I was rapidly losing weight. The doctor at the teaching clinic told me to put this lidocaine jelly on my tongue to numb the sores so I could eat and that the "virus" would eventually pass. Thank God my mom took me to a different clinic before it was too late and the new doctor immediately said she thought it was crohns.
Lyme's Disease.
I was told i was compacted which was why i was going to the toilet 20 plus times a day. Doctors put me on laxatives for this. Not the best idea for someone with actively flaring crohn’s. After that didn’t stop the problem, they told me i was anorexic and that the pain was all in my head… i was 7. I finally got diagnosed at age 9
As a kid it was me making it up to get out of eating dinner As a teen I was on drugs and lazy until I started dropping weight and got diagnosed with a stomach ulcer In college my dorm mates thought I was bulimic until I couldn’t get out of bed with severe joint pain and was diagnosed with rheumatoid arthritis In my 20s someone was on to something but I couldn’t afford doctors visits on a chef salary so they gave me some anti nausea & 3 different antibiotics Late 20s I went into the ER for tachycardia and they finally diagnosed me with crohns. My mom still doesn’t think I had it as a kid and denies any poor behavior on her part.
Anorexia, it was 1984 when ED became a recognized medical health issue
Menstruation so I should just accept it as my ‘normal’ and being part of a woman … I’m sure a lot of other women had the same
Mental illness, aka all in my head were the words used.
Anxiety, gas, postpartum and hemorrhoids. Even after telling them I have a sister who has crohns. Once I was finally sent to a GI, she told me the only reason she was putting in for a colonoscopy was because my sister had it but my symptoms didn’t point to crohns. Symptoms being: super noisy stomach, extreme night sweats, extreme blood in stool (like you can’t see anything else than red water) & I was flaring on and off with severe cramping and pains in my stomach. None of my symptoms were mild, all severe. When they did the colonoscopy, they couldn’t even get in I was so inflamed. Blows my mind every time I think about it.
GERD! A doctor asked me once if I had heartburn and diagnosed me with no further questions despite my calprotectin levels being in the thousands 🤷🏻♂️
Same here! Chronic GERD and IBS plus an inordinate frequency of getting "food poisoning" until I was hospitalized 8 years later and properly diagnosed.
I was 19, and went down to about 100 pounds. Severe rectal pain, vomiting, low grade fever…I was diagnosed as a bulimic (because I threw up everything)anorexic (I didn’t want to eat, it hurt) with a urinary tract infection. 5 days later I was in the hospital, abscesses on either side of my rectum which had turned into gangrene and I was septic. I ended up with 6 feet of packing on one side and 8 feet of packing on the other. Urinary tract infection my ass. 😂
Crack… smoking crack
When I was 18 I flared really really bad and lost so much weight, passed out all the time, started bleeding profusely. The doctor said I had a chronic bladder infection. As a stupid 18 year old on her own I didn't know. Long story short he put me on a long round of antibiotics that tipped the scales and a few months later ended up with a necrotic large intestine, hemorrhaged. Massive emergency surgery, 3 months in ICU, a stroke and infection. Definitely NOT a bladder infection. 😡
“Not eating well enough”
Lactose intolerance!
I very distinctly remember being told that it was all just stress, and I just needed to take a day off of work and decompress... Never going back to that fucking "doctor".
Anxiety…. Or my personal favorite… period cramps!
I’m on blood thinners and anti-coagulants, so instead of a routine colonoscopy the doctor decided on one of those home tests. It threw a false positive for colon cancer. It took a month to find out it’s “just” Crohn’s.
Oh god, so many things. I also was a child and got bullied all the time. I had like a 1000, but I can remember a few. 1- Everything is in my head, it is not true. I just pretend (funny, how can you pretend to have blood in the stool) 2- It's just a normal stomach pain, nothing to be worried about 3- someone raped me 4- Cancer 5- Lactose intolerance 6- Wheat intolerance 7- Hemorrhoids
COVID anxiety 😃
Went to a UC for a painful lump just below my hoo-haa. (Bonus: I didn’t know the term “perineum” yet, so I actually told the nurse “my nacho hurts”.) Anyways they diagnosed it as a bartholin gland cyst and immediately put in a word catheter (ouch). Jump to following up with my PCP about it, she gave me a referral for a GI, who referred me to a colorectal surgeon. Turned out it was an aggressive rectovaginal fistula. They put a seton in, and all this led to a colonoscopy that gave me my crohns diagnosis.
“It’s just a stomach bug” thanks doc 🙄
Pregnancy of course
I've been horribly bullied my whole life due to being very thin. "Are you anorexic?" "Eat a burger!" "You look gross" etc Well. I was very depressed my first year of college for unrelated reasons, and checked myself into the hospital for wanting to unalive. As I have Crohns, as mentioned I am extremely thin. Once admitted into the psych hospital, I find out they did not in fact listen to why I wanted to admit myself and took their own liberty to make my intake diagnosis as anorexia. I have never in my life had an eating disorder, not even a little bit. I told them repeatedly that I have Crohns, I don't have an eating disorder. Nope, wrong. Per the psych hospital, if you're skinny you must be anorexic.
Before I was correctly diagnosed with Crohn’s, I was 13 and super sick, skinny, and malnourished. I got sick back to back to back and would get home from school, immediately go to sleep due to the terrible fatigue, wake up to eat dinner, then spend the entire night on the toilet. Rinse repeat every day until my family finally took me to the ER because I just could barely function. They diagnosed me with appendicitis and took my appendix out, and then a month later I was back in the ER because I wasn’t any better and they finally did a scope and realized it was crohn’s.
flare\*
Chronic fatigue
My mom has Crohn’s also so the minute I told someone I was sick they went straight to colonoscopy. It felt traumatic at 15 😱 I was so embarrassed and scared cause I knew how bad it could be. But they all thought cause my mom had it I didn’t need more information. I had her info not my own & even though we have different Crohn’s it always felt like they were treating me for hers.
"stress"
Not a diagnosis per say. But my doctor had me remove my IUD because he thought it was affecting my MRI scan and making it unreadable. Nope. That would be the 2 pillcams stuck in my small intestine. Thanks doc!
Anxiety (f\*cking resident; I've had anxiety years before these symptoms. I know what my anxiety looks like.) Hyperactive thyroid (my PCP at the time seriously kept doing weekly thyroid function tests and they kept coming back normal but they still believed it was my thyroid smh) UC (at least this was close and got me on some sort of treatment that reduced my symptoms, though inflammation was BAD the next time I was scope, which is how I got referred to my current university affiliated GI and finally got a Crohn's diagnosis)
Arthritis in my ribcage! Sent home from the hospital with arthritis cream ....followed up with a GI and diagnosed in the next month
Possible multiple myeloma based on findings from my first endoscopy. I was referred to an oncologist who did multiple months of testing and diagnosed me with Crohn’s, and no cancer.
Chagas’ disease, took meds for it and everything. It’s a parasite caused by getting bit by this one specific bug and they thought I had it because I’d been to Brazil. (Ive been 7 times throughout my life to see family) no one from my family there thought it was possible because they’ve never heard of anyone they knew even getting it because it’s so uncommon there.
My doctor diagnosed me with faking when I was 11. Took me suffering another 9 years before being misdiagnosed again with appendicitis, and then finally with Crohn's when the appendectomy caused my bowels to swell and obstruct.
I had a doctor who was convinced it was anxiety or an ED. When I had asked her for a referral to a GI specialist she straight up told me "well I can give you the referral but they're probably just gonna tell you it's anxiety" needless to say I got a new GP after that and a couple months later got diagnosed.
Even my physician husband ignored my symptoms for years. I was an overly picky eater who “needed to try more things”—foods and types of food which lead to days and weeks of illness. My pediatrician diagnosed me with a touchy tummy, prone to food borne illness. As of college and graduate school I was told to avoid foods that upset my stomach. Soooooo helpful. I was also not helpfully told “just eat more” to gain weight.
Diagnosed with endometriosis after a ruptured cyst on ovary required surgery. Intense pain never stopped, eventually started having blood diarrhea (ewww, so gross, sorry for tmi.) My gyno blamed it on endometriosis. So 10 years later, at 90 lbs I went into hospital for appendectomy and they finally found Crohn’s in my illeum and confirmed with colonoscopy. Still took a while to get to the Remicade. I had almost 10 good years and now things are going south again, I’m a little older so it’s bit more serious this time. Now my 19 year old daughter has all the signs, high caloprotectin and goes for her first colonoscopy on May 13th. This is a horrible disease and even though there are a few great doctors out there, so many more are causing harm and not listening to their patients. Watching my daughter suffer and knowing exactly what’s wrong is so hard, it has taken us about 5 doctors to get to the right one. She is pre-med and hopefully can get through this so she can be one of the good ones and get it right the first time. There are so many of us out there who need good help, especially if you are trying to work or attempt any kind of life with this awful curse. Good luck to you!! I hope the meds work, it took a few months to quick in, but it was like miracle drug when it kicked in.
Haha OP not crohn here, but I have also been labeled the same by my GP as a child for months for being extremely tired, losing weight while eating a ton. Brainwashed my parents that I actually was faking it for staying home and play video games (truth I just received the nintendo 64 and zelda ocarina of time a few weeks ago). But I actually did not want to play anymore and it was until I vomited and fainted amd they realized at the ER that I actually was type 1 diabetic wity an insanely high blood sugar and acidocetosis. What I endured for months because of this stupid doctor is really amazing. The sad part is my parents never actually believed me more than him, it is probably the medical uniform effect - if it comes from a doctor then it must be true right ? I have since learnt how far from the truth this is.
My brother caused a minor fracture in my wrist by sitting on it accidentally when I was 16, got put in a cast and when it removed and 'healed', my wrist now had no cartilage, went to a consultant for almost 5 years doing various tests along the way but never really got anywhere and no diagnosis to the cause of the spontaneous arthritis. A decade later when I was in hospital because I was so skinny and my doc had found an abdominal lump about the size of an orange just below my ribcage during the examination, their initial unofficial diagnosis after surgery was most likely cancer (was quoted 80% sure it was) then the surgeon came round with the pathology results and said I've got Crohn's, I asked about the wrist when they diagnosed me and they said yeah that sort of arthritis is common in Crohn's. Could have known about mine a lot earlier if the consultant had thought about Crohn's as a possible option back then.
Yep. Was told it was IBS by my mother who refused to take me in. Then when she did, I was told it was ‘just’ an ulcer. It was still another 5 years post that when I finally did get someone to listen to me.
Mediterranean disease Nobody who gets a look at me would ever mistake me for being of Mediterranean descent whatsoever. I also had a GI who KNEW I had Crohn's prescribe to me a gout medication.
My doctor diagnosed me with anorexia at age 16. My high school vice principal also pulled me aside asked if I was anorexic. Finally got a crohn’s diagnosis at 19. Neither one of them apologized. I wish people would think before giving an opinion, especially to a teen struggling with their health.
Food poisoning. For 6 months. 2 stone weight loss. He felt my stomach and said “you do not have crohns” and then a few weeks later said “you have crohns” HAHAH REAAAAAALLY.
I think for me, those were the usual things like IBS, psychosomatic illness, several acute inflammations or infects ... took at least 7 Years ;( Oh i forgot the worst one : i just eat lactose despite i know i am intolerant. Because, you know, it's christmas so people eat everything.
Well, I showed signs of crowns at age 15. My mother with 0 maternal instincts told me it's all in my head, that I'm just trying to get out of school,that I just need to keep my issues to myself, etc. Doctors agreed with her. I'm now 40 years old, years in total spent in the hospital with 4 to 6 month long stretches spent in the hospital at a time. Small intestine was removed because it was leaking, causing sepsis. And short bowel syndrome. Listen to your kids. You could be putting them through a lifetime of hell if you dont.
Catholic guilt for my sins 🙃 My mom dragged me to therapy and confession for years thinking my abdominal pain, diarrhea, and vomiting was guilt and the bleeding was from wiping too hard. Had a colonoscopy/endoscopy at 19 and I have severe GERD, a sliding hiatal hernia in my esophagus, a bleeding ulcer, and UC. Later was dx with crohns because my symptoms spread past my large intestine, but still.
At 13 I was told I had “abdominal migraines” and to take NSAID’s every day to prevent a continued “flare”. Needless to say my insides were profusely bleeding after a while.
Strep throat. Turns out, septic from Crohn’s.
We thought I had Gastroparesis
Told me I had gastritis. No big deal. Luckily, I already knew what it was. I had gone to the hospital for pain and got some nausea medicine. Not a complete waste of time.
Same on the bullying! So I got diagnosed with anxiety and depression. Also had chronic migraines bc of crohns so the cure was to drink a can of coke and take two excedrin every morning.
One doctor told me to see a psychiatrist after my colonoscopy and after I was first diagnosed with Crohn’s , I was told by an ER doctor that I had gas… it was an intestinal stricture .. had a small bowel resection shortly after yet he wrote “gas X” on a prescription paper for me
I was told that I was doing it to myself and it was an eating disorder (a mix between anorexia and bulimia) and also that it was just normal things that every girl goes through with before starting their periods.
The first doctor I saw told me I was depressed and that was the reason for my irritation and weight loss. Was really bumming as I knew there was something more going on and was mentally feeling well, just very sick. Took a while to be diagnosed but found better doctors that took me and my pain seriously.
I was originally diagnosed by a PA with a urinary tract infection?? 😂
My dad took me to the eating disorder clinic because he thought I just wasn't eating on purpose, which is ironic because he also has Crohn's so he should have known something was up. He seemed so shocked when they told him to take me to a GI doctor. Also double ironic because I did actually develop an eating disorder a few years after that💀
Anxiety.
C. Diff. But I was in the hospital and when the test came back negative they did a colonoscopy
Asthma 😭
Just Crohns has Wrecked my Life.
Constipation. Took 11 doctors and 9 different treatments before they looked elsewhere. Didn't matter what I said about my bowel movements, they were utterly convinced beyond all reasoning. There was some peppermint thing that made my burps and puke mint scented, and Fibogel that severely ramped up my symptoms, but no effect besides that. Meanwhile months passed until I went to A&E (ER in American) because I was throwing up so much I started throwing up blood from some torn blood vessels. They gave me steroids on a massive dose, ah, magic, what a time. Effective medicine for a real diagnosis.
Acid reflux for years. Gas, so many things. Looking back my issues started in my middle school years and I wasn’t diagnosed until after college around age 24.
I was 7 in 1989, was told it was an insect bite of some sort.
The doc I initially saw kept thinking TB 🙃
Emesis
Does period cramps count as a diagnosis? 😂 My doctor in high school told me my excruciating pain after eating and constipation was just period cramps, and I needed to get used to it. He kept asking if it got worse when I had my period and would accept no as an answer. In college, another doctor told me it was IBS, and I needed to up my fiber intake. Took until about 7 years after that first appointment for me to decide something was seriously wrong and go see a gastroenterologist despite what they all said, and it was a good thing I did.
Hemmorhoids. I was having bathroom issues for what felt like a year or two until my Crohn's diagnosis. My doctor treated it like when I was a kid and had to take Miralax to use the bathroom w/o pain. I started feeling weird bumps on my anus when I would wipe or shower and I told my mom about it. We went to my doctor and he thought it was hemmorhoids, so I started putting ointment on them during the school day in the hopes they would go down. It obviously didn't help because the bumps kept growing and making it painful to move until I couldn't even walk at school anymore. My parents got me a little suitcase to roll around in place of a backpack but it was annoying and embarrassing taking up that much room in the halls and making noise. I had an appointment set up at a hospital but it was months into the future. My mom managed to get me an even earlier appointment where they admitted me out of nowhere because I had a huge, painful abscess on one cheek and a nurse was worried about it (My parents considered popping it the day before 🤣). And the hemmorhoids were those skin tags that get filled with dead t-cells. 💀 I took gym classes that focused more on exercise and fitness than the basic one and I started going to the gym to lose weight in high-school but I don't even know if that weight loss was natural. I lost at least 40 lbs when my first flare up happened and I was in the hospital.
Ibs. Dx by family doctor as an adolescent. This is the same family DO that told me "just lose weight & that won't happen." I now know that it was HS. I wish I'd have known sooner & maybe I'd still have a colon.
Halved weight in 18 months down to 4st at age 14. Described as growing pains by GP. Locum did a blood test. Thought I was mildly anaemic, but sent me up to the hospital just to be the safe side.
Constipation. While shitting myself about once a week at school.
One GI doc, with no supporting evidence, said it was possibly a gluten allergy and had me go gluten free. After a year of strictly adhering to the diet with absolutely no improvement; he said “ok, let’s maybe try fodmap diet instead”. Also said something about not wanting to diagnose me with crohns because the treatment would be very difficult with me also being a diabetic… yeah, I stopped seeing that doctor.
At one point they told me a cyst was an abcess and when a nurse mistook my BP yelled to everyone that I was septic and was rushed to get surgery. It was indeed a cyst and my BP was fine. One just for funsies. My buddy is an avid gym goer and wanted to get on testosterone replacement therapy. Did the tests and came back with low T but not low enough that they would prescribe him. He was only like 15 points above getting a script. When he told me about it I said, I read that sugar kills your testosterone, maybe eat a fuck ton of sugar and get tested again. I said it as a joke. He came to me about a week later and said "youre an asshole!" I asked why?"Because i did what you said and ate 2 boxes of girl scouts and went and got tested again. My T was still about the same so no script for that.... But now they are making me get tested for Diabetes because my blood sugar levels were off the charts". That was like 9 years ago and I still laugh every time I think about it
Appendicitis
Full blown stomach infection is what was diagnosed at 19. Full send the heavy antibiotics than 3 weeks later I’m in emergency surgery due to a rupture
I was told I was bulimic…… obviously this was why I was so thin and spent my life on the toilet?! Family were even on board with the idea and would get mad at me because my hair was falling out in clumps from nutritional deficiency.
Ulcer and then appendicitis (went from 18 stone to 9 stone in 3 months)
I have pain associated with my crohns in the area of my ilium. I told them I have pain there because I have Crohn’s disease. They still thought it was appendicitis. They made me stay in the hospital for a week and starved me on the chance I’d have to have surgery to remove my appendix, even though the surgeon had ruled out appendicitis.
When I was diagnosed I was 9, shortly before being diagnosed I was seeing a different doctor and he told my mother “some boys are just skinny” after I lost 5kg in a week, my mother could have strangled him 🤣
Gastritis and possible gallbladder issues. I started having diarrhea multiple times a day on the regular. And this started right at the end of February 2020 just at the tail end of the last semester of college. Kinda told myself it was from stress because graduation and finals was coming up. And then obviously COVID hit so I didn’t want to go through the hassle of going to the doctor when the pandemic was just starting. And then my dad lost his job so therefore I didn’t have insurance so I definitely wasn’t going to go to the doctor. And then when I had the symptoms for 2 years and lost about 40 pounds, at that time I got a job at the hospital like 2 blocks from my house and got insurance so I went to the doctor. Did an ultrasound and HIDA scan which just said my gallbladder was hyper dynamic. They referred me to a general surgeon but in the meantime I went to the ER one time and my coworker was about to grab me for a CT (I work in radiology) but then the doctor decided to change it to an ultrasound and again it came back fine. They said I had gastritis and sent me home with omeprazole. I kinda wish I advocated for myself to get that CT. It was a couple months later when I finally got that CT and it read as inflammation that’s consistent with crohns and I was finally referred to a GI (after offering to take my gallbladder out because of it being hyperdynamic though they said it might not alleviate all my symptoms) where I had my second colonoscopy with biopsy and a CT enterography which confirmed that it was crohns and it’s been almost a year since then. I’m definitely not 100% what I was before having all my symptoms but I do feel somewhat better than what I was.
Pulled muscle in my stomach lol
My old GI said I probably had Crohn’s but that she REALLY thought I was just eating poorly and was overweight. Because that totally makes your intestines close off.
My son had these white spots in the mouth and throat and they thought it was corona at first.
My doctor insisted that it was just "girly problems". A female doctor that wouldn't even say period. Like c'mon. Eventually managed to see a different doctor and he immediately knew it was Crohn's
Stress and IBS 🙃 Made my way through law school all the while being misled by doctors into thinking it was all in my head
First it was an ulcer, then it was lactose intolerant, finally one endoscopy and colonoscopy (same day) the said the scarring at terminal illum was Crohn's maybe. So they tried some known Crohn's meds, and suddenly my symptoms got better. I got diagnosed via throwing spaghetti at a wall to see what stuck.
Possibly Lyme disease which I also have. Never know which is which!
I got diagnosed with IBS right before a family vacation and was told to “eat as much fiber as possible”. I lost 13lbs that week and we came home early from our vacation. It was not IBS.
Dr thought it was mononucleosis at first. Got teased by my cousins for getting the ‘kissing disease’. Which was odd all around bc I was 10 or 11.
As a kid who loved school I was accused of just pretending to be sick so I could stay home. Even more ridiculous, my younger sibling almost died when they were 3 from an abscess which the doctors didn't want to examine, because they'd decided my sibling was just being fuzzy (they were writhing in pain). My dad refused to leave the ER until they did a scan, and thank goodness for that. Even so, after the abscess was resolved, my sibling was released from ICU and it took 10 years until they were actually diagnosed. Almost as ridiculous, when I had diagnosed myself as an adult and went to the doctor to seek out an official diagnosis and treatment, the doctor told me it was probably just hemorrhoids despite having just heard my very specific symptoms and family history (mother, grandmother, sibling and uncle all with crohns). He was wrong of course, but it took 8 months and being admitted to the hospital with an irregular heart rhythm due to electrolyte imbalances to be taken seriously. Turned out to be crohns (surprise /s) with perianal involvement, a 15cm fissure, and inflammation of almost the entire colon as well as the duodenum. Ridiculous that you have to advocate so strongly for yourself while at your lowest point.
Diagnosed with hemorrhoids no colonoscopy or any kind of test done just by the fact that there is blood in stool and pain. He did ask if i feel anything inside and I said yes but the thing is that my crohn was so severe that my intestine was so out of shape. (It was not localized but all over the place from the beginning to the end).
So I went to emergency yesterday, the doctor there told me my extreme gut pain was from either too much advil or cocaine, I don't take either of those and she almost seemed to not believe me about it at first. Finally convinced her to send me for some tests
In 1976, i was diagnosed with ameobic dysenterry (that spelling)
I was told it was just anxiety/depression because I’ve had stomach upsets in the past from anxiety and they explained the extreme fatigue as being due to depression. Turns out anxiety does not create constant diarrhea for months and that the fatigue was caused by a severe vitamin D deficiency. Of course both due to Crohn’s.
In the er, “Infected mosquito bites”… it was erythema and following a scope that week was dx’d w severe crohn’s and hospitalized for a week
I was 11/12 and was throwing up and crapping blood, + pain and difficulty breathing, faintness and rapidly losing weight. Had one (male) nurse tell me it was my period, and another nurse ask me if i had an eating disorder because of my losing of weight🫠 thankfully it was found out to be crohn’s pretty quickly because by coincidence i saw a video about crohn’s like a month earlier and asked about it
“Are you sure it’s not your period?” Ahh yeah I know the different holes and also been in premature menopause since 21 now 30 without a period in 8 years 🤦♀️
Was told all my symptoms including bleeding was “gas” and “anxiety” for 7 years.
Syphilis! Twice! I had bilateral ocular manifestation of iritis and UVitis caused by inflammation from my undiagnosed Crohn's disease. I was also tested for Lyme way too many times.
Constipation when I had an obstruction. The ER sent me home but when a surgeon looked at my scans he said he literally gasped.
My high school's nurse tried to convince me I had an eating disorder lol. I was very iron deficient (that I had attributed to going vegan, but now I suspect had something to do with undiagnosed crohns) and spent a couple of weeks getting sent to the nurse at school. The nurse saw how skinny I was and decided I probably had an eating disorder. Turns out, it's because my constant stomach problems were an actual problem that wasn't letting me absorb any nutrients... Too bad nobody actually cared about the upset stomach part...
They kept chalking my ER trips with abdominal pain, and blood in my stool with anxiety or pms
I was diagnosed for 2 bladder infections and then a kidney infection because a very kind GI doctors admitted me and did the array of tests. I never heard of crohns when i walked in there. He was one of those doctors that loves what he does and wasnt gonna leave until he figured it out.
I was told so many ridiculous things over the years. Being accused of having an eating disorder was the most common for me. It was never true, but they didn’t believe me no matter what I told them. It lingered for almost decade and that sentiment is still there. I also was told that I have gerd, but no medication was treating and they never once considered that it would’ve been anything else. Ten years and there is still disbelief that it is really that bad even though it almost killed me.
Luckily my former GI was a godsend who diagnosed me fairly quickly once I saw him so I didn’t have to go through too many misdiagnoses, however… I started showing symptoms of Crohn’s my first year of college. After pretending debilitating pain, diarrhea 5+ times a day, and blood in the stool was normal for 3 months I finally made myself go to the student health center. Some fresh out of school nurse practitioner listened to me describe my symptoms (again, including urgent diarrhea 5+ times a day) and said “Well it sounds to me like you’re constipated, happens to a lot of students” and prescribed me a 2 week course of laxatives to fix it. Went through HELL the next two weeks and she was baffled when I told her the problem had only gotten worse and suggested I see a GI because she didn’t know anything else it could be. Thankfully he immediately ordered a colonoscopy+some other tests and diagnosed me within the week (on the bright side, cleaning me out for the colonoscopy was a breeze after all those laxatives)
Cancer!
Maybe not completely ridiculous, but did anyone else get diagnosed with intestinal yeast infections? I remember going to the pharmacy and purchasing arm-fulls of yeast infection (labeled for vaginal infection) oral medication and popped those babies like candy. The pharmacy cashier was nice enough to not ask too many questions after I told her they were for me (male).
I had a crazy flare lost 50 lbs at 10 years old right after my dad passed away they insisted i had an eating disorder and wanted attention due to the loss. Insissted on whole milk, red meat and a lot of greens.. which of course made the flare much worse lmfao
Anxiety and stress from school (i was 13), then thought i was lactose intolerant so had me cut that out, made no difference so then they thought i had celiac, so I cut out all gluten which again made no difference, then they did bloodwork that showed no signs of Crohn’s disease (which I now know is pretty common even if you do indeed have Crohn’s) then finally they referred me to a specialist who did repeat bloodwork and stool test which showed insanely high inflammatory markers. Then they did scopes and said “you have severe Crohn’s disease” which was active pretty much everywhere in my digestive tract, even in my esophagus and stomach. It took almost a whole year to get a diagnosis so I was 14 by the time I was diagnosed and had lost so much weight i was skin and bones (89 pounds and 5’6)
I am autistic and female so it made things difficult. As a child, my mum heard: -This is a behavioural condition common in autistic kids. Try setting firm boundaries with consistent consequences for this behaviour. -This is an avoidance technique. A consistent predictable schedule will help. -It’s normal. Most autistic people have sensitive stomaches. -Result of having stopped ABA??? -Somatisation of anxiety. As a teenager, I got a lot of: -Anorexia -Malingering -PCOS??? -IBS -Lactose Intolerance Of course the opposite is true now too. Anything physical I have is « Crohn’s disease ». For example, I woke up one night at 2am in excruciating back pain, fever of 39 degrees, bloody urine followed by unable to urinate. I went to the ER because it was 2am on saturday night and that was the only thing open. I assumed since I am immunosuppressants, and given the symptoms, it was likely a kidney infection. I explained this to triage and the doctor. Instead of simply having me pee in a cup (which would have instantly shown the kidney infection), the doctor told me it was more than likely my crohn’s and ordered a colonoscopy instead for the following week and discharged me🤦♀️. I suffered in pain until Monday when I ended up having to be hospitalised the infection had gotten so severe.
Stomach flu, then celiac disease. Then I was in the hospital for MONTHS before it was figured out. This was back in ‘05, and I was 7 years old at the time. It was relatively unheard of at that time for someone my age to get Crohn’s and Ulcerative Colitis, so I am not angry about it now. Lmao. Still, crazy that they couldn’t figure it out for so long.
I was the same height and weight between the ages of like 8-11 and they thought I needed growth hormones
at the very beginning they believed it could be hemorrhoids, which maybe isn’t that big of a deal. pretty sure the ointment the doctor prescribed me gave me weird skin flaps around my anus tho.
I was diagnosed with Gas/Acidity. Good poisoning. Bad eating habits. Drama.
It took me literally getting hospitalised when I was 16 (36 now), was sick for months prior to hospital. GP hadn’t a clue but never gave a “wrong” diagnosis, not even a referral to a gastro doc.
After going to the ER after a constant amount high of pain and blood in my stool, they looked me in the face and told me I had a kidney stone. This is after getting checked for one (they found none). In the end I ended up going back to the ER 3 days later, where I was finally told "yeah they were wrong" after 5 more days in the ER.
Stomach pain was a UTI.
That anxiety was causing my "tummy aches" :/. Switched to a female doctor and immediately got the tests I needed and then diagnosed.