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02-17-2014, 10:20 AM   #1
Justin1982
 
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How Long did it Take to Receive a Diagnosis

I'm just wondering how long everyone else suffered before getting an "official diagnosis". Took me a good 20 years, 120 pounds of weight loss, and a huge reduction in quality of life....

Wonder why Crohn's is so hard to spot...
02-17-2014, 12:46 PM   #2
akduck
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It took about 10 years. First diagnosis, after a scope, was IBS, so I just lived with it for years. Then it was lactose intolerance, but after a couple of months lactose free, symptoms came back. Ended up in ER with diverticulitis, and the Crohn's showed up on the CT scan. They called it "suspected Crohn's" and it was a few months later when the diagnosis was confirmed by scope! It does seem to take a while to diagnose!
02-17-2014, 12:53 PM   #3
Justin1982
 
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Seems to be a running theme here. Lack of proper diagnosis.

I too was "IBS" for years. I didn't know IBS caused 55% weight loss + Kidney Stones.. but hey.

I wonder if Doctors are leery to diagnose Crohn's or too few understand the disease.
02-17-2014, 03:36 PM   #4
Absentminded
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Similar story here. I was first diagnosed with IBS and I just assumed it was correct for five years.

But then things got worse and worse and I ended up in A&E. I got an immediate clinical diagnosis of Crohn's that night and was put on steroids immediately, with the Crohn's diagnosis being confirmed by colonoscopy a week later.

I put my misdiagnosis down to my GP being too proud and stubborn to admit that she might have been wrong. Towards the end of the five years I questioned my IBS diagnosis several times, but she just kept insisting that was it and refused to even do a blood test for me. I even suggested Crohn's at one point after reading about it in a magazine and was told that it wouldn't be anything that serious.

I often wonder whether, had my Crohn's been seen earlier, I would have had all all the difficulty I have had in getting it under control and needed all the surgery that I have had.
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02-17-2014, 04:39 PM   #5
nikimazur
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Wow and I thought a couple of years was a long time. Ten years ago I had a Traumatic Brain Injury at age 15. For the first six years, I had severe stomach issues but my docs at the time discounted it as gastritis from all the meds I was taking and IBS from stress. It took loosing 30lbs in 6 weeks for my GI doc to finally believe that my issues weren't just IBS. I guess it did help that I have a family history of Crohn's (my grandmother has had it for years), so it was one of the first considerations.
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02-17-2014, 04:43 PM   #6
Amaze
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Took me almost dying to be diagnosed as I was misdiagnosed countless times.
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02-17-2014, 04:47 PM   #7
blackli
 
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Seems like a common theme... Diagnosed with IBS for at least 10 years prior to crohns diagnosis. IBS seems to be a go to catch all syndrome to cover all GI related ailments until it gets really nasty.......
02-17-2014, 06:07 PM   #8
Sailorluna
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24 years of changing diagnosis. Lactose intolerance, Gallbladder, finally IBS until being diagnosed with Crohns on the operating table for resection due to full obstruction. Surprise!

My gp is pretty young and when the GI said IBS she just went with it even when I lost 70 pounds and kept vomiting. The ER sorted things really quickly.
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02-17-2014, 06:10 PM   #9
darster
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IBS for 3 years until it got unbearable, constant D, pain, cramping etc. Once I found a specialist and pushed to look deeper, it didn't take very long. He went procedure by procedure until a barium drink with a small bowel follow through highlighted the problem in my small intestine. It's been a fun ride ever since...
02-17-2014, 09:19 PM   #10
sickofcrohns
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Took me almost dying to be diagnosed as I was misdiagnosed countless times.
Same here. Took 4 years, countless scans, 3 hip dislocations, down to less than 92 lbs (that's my post-hospital weight), unable to swallow for almost a month, etc. before a GI got involved and I got scoped. I was never diagnosed with IBS; codeine for the joint problems and throat ulcers masked my gut issues. Before being diagnosed with Crohn's, nobody was sure what I had, and I saw infectious disease specialists, rheumatologists, physiatrists, dermatologists, etc. Nobody put it together that all the different organ systems that were going haywire were going haywire from one underlying cause.
02-17-2014, 10:05 PM   #11
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Took me 6 months of c-diff infections, 4 years of "IBS", lost 30 pounds, and 2 primary docs and 3 GI specialists before I was finally diagnosed with UC. I knew there had to be more than just IBS so I was so glad when I met my current GI who diagnosed me after her first scope which she did as soon as she could after she met me.
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02-17-2014, 10:30 PM   #12
PVail
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3 years of IBS diagnosis and multiple scans etc... until it was found by accident I guess. Nothing else eased my symptoms untilIi started on the most basic of drugs, Asacol. After that they gave it a second look and said Crohns of the TI along with Colitis . The Colitis faded and comes back every so often . Constant pain with the TI but now my doc just dimissses it and says he is not convinced either way.
Very poor system indeed. Extremely frustrating. Lost my career as a musician and has taken me four years to get my life back on track.
Doctors need a lesson in humanity/ honesty
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02-17-2014, 11:04 PM   #13
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jeez...I had no idea that it took so long for other people to actually get a diagnosis. I had symptoms for about 3 months, then I got my results about a week and a half after my colonoscopy...I must be lucky :I
02-18-2014, 03:37 AM   #14
Jennifer
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Took about 3 months to get a diagnosis. Had flu like symptoms for many months prior before the extreme blood loss. I was hospitalized the entire time they tried to get a diagnosis. This happened 23 years ago so I'm not entirely sure why it's taking longer these days to get a diagnosis. Might just be the luck of the draw with doctors.
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02-18-2014, 04:37 AM   #15
Amanda89
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I was very lucky and diagnosed through a colonoscopy 5-6 months after I started getting symptoms, but it was because me and my doctor knew the warning signs as my brother had been diagnosed 2 years before.
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02-18-2014, 05:20 AM   #16
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Its sad its such a long process I think it would be easier if Drs listened. I was 10 when I started to get Symptoms pain, Rectal bleeding, fatigue and growth problems. Mum took me to the Drs straight away and got referred to a paediatrician. But for three years my parents where accused of abusing me, i was accused of being lazy or bullied. Was sent to a dietician as they decided it was an eating disorder then a shrink o and a special school! During this time not one person did a scope, it was not until my mum lost it was my GP he referred me to a Surgeon who scoped it and diagnosed it immediately I was 13 by this time. Because it had been going on so long I was so ill at that point I don't know how I survived, severely stunted my growth though.
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02-18-2014, 09:30 AM   #17
Kero
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I have been in pain now for 8 months, still undiagnosed. I have had CT scans, ultrasounds, x-rays, everything but a traditional scope. Seen a general surgeon twice about a possible scope, both times he suggested other tests and sent me back to my GP.
02-18-2014, 10:46 AM   #18
scottsma
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Hadn't been "right" for years, but after bleeding for a few days, saw my GP ,had sigmoidoscopy and biopsies at hospital, and was on meds in under 4mnths.
02-18-2014, 10:59 AM   #19
vonfunk
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It was about two months. However in that period of time I was waiting for my consult date with a GI, things went downhill quickly, I ended up n the ER near death, and was diagnosed with having either Crohn's or UC during the week hospital stay. They confirmed which ne it was at my follow up.
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02-18-2014, 05:36 PM   #20
nikimazur
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It seems like for most of us it wasn't until we were "near death" or gravely ill that we got a diagnosis? I feel that the issue lies within physicians being cognizant of signs/symptoms. I work in public health, and physicians daily and can understand both sides but it really shouldn't take as long as it does.
02-18-2014, 08:32 PM   #21
SarahBear
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It took me nine years. My problem was that my mother didn't believe me and told every doctor I saw that I was faking it. They chose to believe her over me, so my symptoms were dismissed. Eventually they increased in severity, and while my mother continued to alternate between, "You're faking it," and, "It's anxiety," (I never indicated in any way that I had anxiety) I finally got a doctor to refer me to a GI.
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02-19-2014, 01:43 AM   #22
Justin1982
 
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Took me almost dying to be diagnosed as I was misdiagnosed countless times.
I've counted up about a dozen doctors in the last 5 or 6 years... Guess you've got to be on death doorstep to acquire a listening ear.

I had IBS, Celiac, Rapid Gastric Dumping, Hypochondria, etc....

Got to point I stopped eating because food repulsed me. I got sick whenever I ate a bite and had zero appetite... Took 7 months to stabilize that out after my 20 yrs of pleading for help.

Something to be said about doctors, huh?
02-20-2014, 05:38 AM   #23
Amaze
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I've counted up about a dozen doctors in the last 5 or 6 years... Guess you've got to be on death doorstep to acquire a listening ear.

I had IBS, Celiac, Rapid Gastric Dumping, Hypochondria, etc....

Got to point I stopped eating because food repulsed me. I got sick whenever I ate a bite and had zero appetite... Took 7 months to stabilize that out after my 20 yrs of pleading for help.

Something to be said about doctors, huh?
the medical world sucks. The other day I had an appointment with my primary doctor but she cancelled and I wasnt notified so instead they stuck me in with one doc who couldnt tell where her head begins from her ass. She literally pulled out her phone and googled my symptoms I was telling her...


Before I was diagnosed a doc told me it was all in my head and it is humanely impossible to go to the bathroom that many times. Another doctor told me I just had a stomach ache and I was drug seeking for narcotics... I have many horrible experiences with doctors I dont know where to start

you're right. Death is the only way for them to notice. Took me almost dying.... no joke... almost dying
02-20-2014, 05:44 AM   #24
pink&green
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About 4 -5 months back in 1990 his primary Dr thought he had a stomach virus. Then months later his dad took him to the ER & that's when he had his first surgery.
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02-20-2014, 06:25 AM   #25
2thFairy
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18 years. A lot of IBS thrown at me in between psychotherapy, pain management and physical therapy for "chronic pain syndrome." Got my diagnosis of UC after 18 years of that and 2 years later my colon came out. Finally have my life back!!!!
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02-20-2014, 08:54 AM   #26
Justin1982
 
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the medical world sucks. The other day I had an appointment with my primary doctor but she cancelled and I wasnt notified so instead they stuck me in with one doc who couldnt tell where her head begins from her ass. She literally pulled out her phone and googled my symptoms I was telling her...


Before I was diagnosed a doc told me it was all in my head and it is humanely impossible to go to the bathroom that many times. Another doctor told me I just had a stomach ache and I was drug seeking for narcotics... I have many horrible experiences with doctors I dont know where to start

you're right. Death is the only way for them to notice. Took me almost dying.... no joke... almost dying
A bit off topic, but here's one for the story books (Non Crohn's). I was 16 or 17 began to feel ill over winter break. So I told my mom I REALLY needed to see a doctor, and I don't think we'll be able to go visit her parents.

My family doc was gone for 3wks and there were fill-ins. First doctor told me I had the flu, go home get some bed rest. I knew to high hell it wasn't the flu. Day or two later, I said mom I REALLY need to go back to doctor. So we go a second time.

Dr. #2 tells my mom what's your ulterior motive? Your child was JUST HERE few days ago. He has the flu. He's being a hypochondriac and to get him rest.

Well I get much much worse and tell my mom I REALLY need to see the doctor. I think a week or two passed. So I go back in, and by this time I'm hacking up blood. MY NORMAL doctor, very concerned asked, "Why weren't you here sooner and has anyone done a chest X-ray"?

Yes... Jackass #1 and #2 told me nothing's wrong and No X-ray.

Come to find out, both lungs had become engulfed in blood. They wanted to immediately hospitalize me. I refused. I ended up having a SEVERE CASE of double pneumonia that nearly killed me. Took 6 weeks and almost missed a month of school before I was better.

Moral.... Medicine isn't about doctors being right on their own preconceived notions. It's about doctors listening so a proper diagnosis can be made.
02-24-2014, 01:48 PM   #27
durwardian
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I agree, diagnostics is so far a huge failure. It costs lives. It does remind me of the TV series "House"
02-24-2014, 02:44 PM   #28
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Yes totally agree they need to put emotion and personal beliefs aside. Bring on the Vulcans
02-25-2014, 11:07 PM   #29
Justin1982
 
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I agree, diagnostics is so far a huge failure. It costs lives. It does remind me of the TV series "House"
If Dr. House were real, we'd all have a diagnose pronto. Unfortunately, many have suffered long and hard, before some doctor came along with open ears.

Sad, but true. In my experience, doctors are more interested diagnosing a problem, than being right about the diagnosis.
02-28-2014, 03:39 AM   #30
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For me, I got my first diagnosis for Crohn's disease when I was 18. I ended up in the hospital when I was 17 and was there for three days with what they wanted to call a Kidney Infection. I was put on strong antibiotics and pain killers for a month and told it would go away. It didn't. They did a barium x ray, found inflammation, then moved on to a colonoscopy. My first GI was a knuckle head and said that even though he found ulcers and inflammation in my ileum and large intestines, he thought I probably just had IBS. Unfortunately, this diagnosis postponed treatment for a year for me. I changed GIs and my new one diagnosed me right away. Started on treatments, went into remission. Recently, I am having another flare up and she wanted to make sure I actually had Crohn's. My third colonoscopy confirmed it without a doubt. Now I am on Humira and hoping that kicks it into remission.
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