HOW WERE YOU DIAGNOSED WITH CROHN'S

I'm curious to know how everyone was diagnosed with their illness. I've had abdominal pain and 2-10+ BM's a day since 2005. I've had countless ER visits where they just said it was IBS or just unexplained abd pain. In April 2008 I went to the ER because I was feeling the worst pain i had ever felt in my life. After a CT scan which said i had Ileitis, I was admitted and given meds and IV fluids for 4 days then discharged. My then GI doc reviewed my records and was convinced it was just gastroenteritis. I had an Upper GI with small bowel follow through, it came back normal only that the barium went through to my sm bowel at lightening speed...I was then hospitalized again in Sept 2008 for Ileitis after the CT scan in the er showed the same thing as in April. this time I was given steroids and antibiotics. I went to my then GI doc who requested I get another colonoscopy done. Got it done, of course, it came back fine. My GI doc told me i was fine, no evidence of Ileitis, and to come back for any "other" reasons. I switched to another GI doc and after reviewing my CT scans from the hospital, he said, yes i have crohn's which affects my ileum. He put me on prednisione 40mg's...saw him another 2 wks later, lowered me down to 30mg's... then to 20mg's the following 2 wks...I started having pain again and the diarrhea came back so he ordered me to get a small bowel series. I went to his office last week with the films and he said my ileum looks normal. He's now thinking about taking the Crohn's diagnosis away. I am soo confused. How can i have ileitis on a CT scan, but not on the small bowel series? and do you have to be in excruciating pain during these tests in order for it to show up?? Any insight is greatly appreciated.

Geeze I was diagonosed 24 years ago after terrible pain and d that never stopped and I couldn't get out of bed.....thats about a million bowel movements ago

12 years ago I was diagnosed with Ulcerative Colitis after they found ulcers in my lower colon via colonoscopy. At that time, I was losing a ton of weight, having constant D and bloody stools. My SBFT, TAG White Blood Cell tests, ultrasounds, bloodwork were all fine.

I went on Asacol for 2 years. After 2 years of feeling better (I also drastically changed my diet), I went to a new doctor, got a sigmoidoscoopy right there in his office (I wasn't even expecting one). He did not see any ulcers or inflammation and my blood work was fine, so he ruled IBS, which I happily accepted as a diagnosis and left.

10 years later, after many bouts of what seem to be flare ups, I decided to go to a GI again. During that 10 year span, I always had D and stomach pain, but I grew a tolerance for it and most of the time switching to an all liquid diet would help when I was feeling really sick. This time, my symptoms were as bad as, if not worse, than they were 12 years ago (minus bloody stools) and 2 months of only consuming liquids did not help. My GI ordered blood work, all of which looked fine. I had to wait a month for my colonoscopy, and at that time I was starting to feel a bit better and I was eating again. Nevertheless, the colonoscopy showed scattered ulcers and inflammation in the illeum and upper colon, and the biopsies confirmed patterns of inflammation. I have a SBFT scheduled soon, but I am guessing it won't show anything, and my GI doc said the test results of the SBFT will not change his diagnosis.

Crohn's can be hard to diagnose. My current GI thinks I was misdiagnosed 12 years ago, and that I have had a moderate case of Crohn's all along. Sometimes it takes a while for even colonoscopies to pick up patterns of inflammation. Good luck and I hope you get a dx soon!

Severe pain, thought it was an appendicitis. After a CT in the ER they recognized a blockage. ER doc suspected CD and they confirmed with a scope a day later. I had no clue.

i started just being really gassy all the time for a few months..then i started crapping out mucus like stuff...thats when i got ahold of my twin sister's GI (she has ulcerative colitis) and I figured I had UC too cuz my twin has it!...a week before my scope I started with alot of bleeding and going to the bathroom atleast 10 times a day, but it was all blood all the time and sooooooo painful...i got diagnosed with crohn's and lost so much blood and weight in the 2 weeks after the scope that I was hospitalized for dehydration and a fever of 103...and was there for 34 days...it sucked...i've only been out for a few months..im still so new to all of this..it happened so suddenly....

I started having pains in lower stomach and D, cramping in stomach that was so bad I couldn't stand in fall of 07 so I saw a GI and had a scope at the end of that year. Results were that everything looked normal so they said I had IBS. I was still having major problems and in Jan 08 they took a blood test (promethus ?? i think) that showed I tested positive for Crohns and that it was inactive. I still have problems and can't get info from docs so am looking at different doctors. I hope that you can get the right diagnosis, I know it can be frustrating when they think it is all in your head.... good luck!

i went to the ER thinking I had gotten food poisoning, severe D and cramping for 3 days. they gave me fluids and antibiotics and send me home many hours later. i was back a week later with teh same thing and told them it had to be something else. one doc ordered a CT after feeling around on my stomach. after drinking allot of barium (who would think you could get sick of the taste of pina colada?) the test showed I had blockage they pumped me full of fluids to try to get it to pass on its own with no luck. so i went in for resection lrg and sm intestine, removed my appendix, it had calcified. been good until this year, and thats a whole other story.

My bowel obstructed to the point of vomiting fecal fluid. Got to the hospital just in time. Diagnosed after colonoscopy and surgery.
I was ill awhile before that point, with diarrhea, pain and weight loss. Was told many things from IBS to depression, God I was in
a mess, and then being told (in a roundabout way) that was all in my head, was the last straw. I obstructed a week later, and in some
ways I was glad that happened. At least I knew I was truly sick...
Since then I've never gone into remission, and gone on to have other diseases diagnosed as a spin off to crohns... It's been 12 long
years, and I'm still fighting, but at least I'm fighting!!

Mine started out with eye inflammation that would not go away.  I DID have diarrhea and gas, but I figured it was just my stomach.  Anyhow, after having the eye inflammation for about 6 months, I went to see my Internist and she instantly thought Crohn's.  Getting diagnosed was another issue. 

The first GI would not diagnose it, although I had inflammation in my ascending colon, cecum, and inflammation in my TI and ulcers.  I also had extraintestinal symptoms as well that the first GI pretty much blew off. 

I had the SBFT which showed absolutely nothing.  Then I had the pill cam done which showed inflammation throughout my entire small bowel, and that got me the official diagnosis.

My bloodwork has always been normal except for the high WBC count probably caused by taking prednisone.  My serology 7 was also normal. 

I wasn't in awful pain at the time I had any of the tests, come to think of it.  Honestly, my bowel symptoms are minor compared to my extraintestinal symptoms, which is weird, but I guess that is just how I flare.  Don't get me wrong, sometimes my stomach about kills me, but the arthritis and the scleritis (especially the scleritis) are just awful at times. 

I guess my point is even though my stomach was not feeling terrible at the time, I still had inflammation show up on both my colonoscopy and pill cam. 

Best of luck to you and keep us posted. 

Diagnosed late December 2001 (after only having symptoms since November) as having Ulcerative Colitis. Conoloscopy showed inflamation and numerous bleeding ulcers throughout the entire length of my colon. Three photos of that c'oscopy showed about 30-40 ulcers in 2"-3" sections of different parts of my colon.
Treated for UC until surgery in May/2008. Original surgery was to remove my entire colon, have a colostomy bag for several months and then a J-pouch surgery. In the operating theater, my surgeon discovered upon opening me up, that there was really only one 4" area of my descending colon that was badly diseased, the rest of my colon looked good and my small intestines also looked pretty good. All the signs he saw pointed to Crohn's, so he only removed 6" of that bad section and I didn't have to have a colostomy. It took about a week, but my pathology on that colon portion came back positive for Crohn's.
Surgeon also removed my appendix.
Heidi

catpower said...
12 years ago I was diagnosed with Ulcerative Colitis after they found ulcers in my lower colon via colonoscopy. At that time, I was losing a ton of weight, having constant D and bloody stools. My SBFT, TAG White Blood Cell tests, ultrasounds, bloodwork were all fine.

I went on Asacol for 2 years. After 2 years of feeling better (I also drastically changed my diet), I went to a new doctor, got a sigmoidoscoopy right there in his office (I wasn't even expecting one). He did not see any ulcers or inflammation and my blood work was fine, so he ruled IBS, which I happily accepted as a diagnosis and left.

10 years later, after many bouts of what seem to be flare ups, I decided to go to a GI again. During that 10 year span, I always had D and stomach pain, but I grew a tolerance for it and most of the time switching to an all liquid diet would help when I was feeling really sick. This time, my symptoms were as bad as, if not worse, than they were 12 years ago (minus bloody stools) and 2 months of only consuming liquids did not help. My GI ordered blood work, all of which looked fine. I had to wait a month for my colonoscopy, and at that time I was starting to feel a bit better and I was eating again. Nevertheless, the colonoscopy showed scattered ulcers and inflammation in the illeum and upper colon, and the biopsies confirmed patterns of inflammation. I have a SBFT scheduled soon, but I am guessing it won't show anything, and my GI doc said the test results of the SBFT will not change his diagnosis.

Crohn's can be hard to diagnose. My current GI thinks I was misdiagnosed 12 years ago, and that I have had a moderate case of Crohn's all along. Sometimes it takes a while for even colonoscopies to pick up patterns of inflammation. Good luck and I hope you get a dx soon!

Scattered inflammation as in patchy with healthy tissues in between is crohns and not UC, with UC the entire area affected will be inflamed....IF your SBFT shows any inflammation then that guarantees it's CD and not UC and therefore your doc should confirm CD for you.  I agree with your GI that you were most likely misDX 12 yrs ago.  The same meds used to treat UC are used to treat crohn's colitis as well (which is inflammation of the colon) since CD can affect any part of the GI tract and UC is limited to the colon/rectom only.

:)

Several bouts of what I thought was food poisoning and several trips to ER, horrible pain, explosive D and high white blood cell count admitted in Jan 2007 - had CTs done, colonoscopy many blood tests - diagnosis CD. Since, several GI docs, several diagnosis IBS, UC and CD. Symptoms the same but considered mild in comparison to flares that symptom meds cannot control, which land me in the ER (no more hospital stays unless ABSOLUTELY necessary).

Well. Five years ago...I was sick. I'd been sick for about a year before I went to a doctor. I'd lose my appetite lightening quick. As in, taking a bite of food, then go for next bite and the smell would turn my stomach so I didn't eat it. I also would get mild tummy aches after eating. That' how it started. Toward the end of that year, I was eating a single slice of bread with honey on it a day and drinking pepto all the time. I'd been checked for IBDs, diagnosed with IBS, possible ovarian cancer, acid reflux, and stomach ulcers. I had three surgeries in three months to deal with abscesses, fistulas, and the first was exploratory to figure out what caused the massive infection across my lower abdomen. I'd had hyda scans, peptic scans, CT scans, the pill camera, two hospitals that said I didn't have Crohns. Fast foward five years and I wake after emergency surgery to a doctor telling me I have Crohns. I told him he was mistaken and to do the tests again 'cause I'd already been tested for it three times and it came up negative (I was also REALLY groggy and drugged up). I never met the GI, actually. I left the hospital with a brochure on Crohns and no one EVER explained anything about it to me. They just kicked me out without telling me anything about the disease other than that I had it.

I was never given the number for the GI. I got it at my surgeon's office when I mentioned that I couldn't stop going to the bathroom. No one told me THEN that I'd have to be on some kind of maintenance drug for the rest of my life. The surgeon told me to take a little imodium for the D and to take Advil for the pain. Actually, I learned everything about this disease on my own. I've never actually talked to a DOCTOR about it and how it has and is affecting my life. I mention it to the ER docs and I get the "she's one of THOSE" looks. They don't tell me about Crohns. I've called the GI and they just refill my meds and tell me take Tylenol if I'm in pain (they don't pay attention when I mention that I have liver issues). So honestly, as bad as it is...I do my best on my own to figure out about the disease 'cause I don't trust doctors...I don't LIKE doctors.