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How long did it take to get a diagnosis?
- Thread starter Niks
- Start date
I had an abscess and a fistula, that's how they found out. I'd say I had symptoms (but mild for 6 months to a year) before then. So it was a pretty quick diagnosis. Didn't help me much as my first GI was a pretty crappy one who didn't even mention aza as long term treatment (that was in 1999) and left me on Pentasa even though I had flares on a pretty regular basis. He was also opposed to corticosteroids... The result was scaring and surgery in 2003.
Tests were the standard ones: colonoscopy and blood tests. Plus a scintigraphy.
Tests were the standard ones: colonoscopy and blood tests. Plus a scintigraphy.
I don't know if this will be helpful but here goes. I got sick when I was 11 with periods where my weight would drop, appetite loss and abdominal pain. Around 2008 the relentless testing started. At this point my ESR was high and my faecal calprotectin was high but nothing much was done about it, everything was arrtributed to another autoimmune condition i have. I had a whole raft of tests done. 2011 I had a three week inpatient stay with loads more testing which all came back normal. Then last summer they retested my faecal calprotectin and it was quite high, along with my ESR being the highest it's ever been. At this point my diagnosis changed from it being a psychological problem (!) to ?IBD, based pretty much on my calprotectin results. They tried steroids and they worked beautifully which confirmed it was an inflammatory problem.
The tests I had which were all largely normal for GI stuff... Colonoscopy x 2, flexible sigmoidoscopy, endoscopy x 3, ct scan x 2, MRI scan x 2, mr enterography, sibo test.
Despite all this they say there is definitely inflammation in my bowel somewhere just that they can't find it. Doc says probably small bowel crohns.
IBD is weird and certainly not always straightforward, I know I'm giving my doctors a really hard time trying to get it figured out.
The tests I had which were all largely normal for GI stuff... Colonoscopy x 2, flexible sigmoidoscopy, endoscopy x 3, ct scan x 2, MRI scan x 2, mr enterography, sibo test.
Despite all this they say there is definitely inflammation in my bowel somewhere just that they can't find it. Doc says probably small bowel crohns.
IBD is weird and certainly not always straightforward, I know I'm giving my doctors a really hard time trying to get it figured out.
Cat-a-Tonic
Super Moderator
Niks, I hope this helps. I've had presumed IBD since October 2009. I'm still not officially diagnosed, but my doctors take me pretty seriously and they feel that I do have some type of IBD, so they have treated me as such, and as a result I've been in remission for the past 2 years or so. I probably won't get an official diagnosis until I flare up again, as my doctors and I feel it's not worthwhile to do more testing while I'm in remission. Before I was in remission, I had just about every test out there - colonoscopy, upper endoscopy, pill cam, CT, various blood & stool tests, etc. The only major tests I didn't have were barium swallow/barium enema, and MR-enterography. All my tests came back normal, did not find a thing out of place and my bowels looked perfect. My doctors treat me as though I have IBD based on my symptoms, the fact that I respond well to pred & Entocort, and the fact that we've ruled out most everything else that this could potentially be (Addison's, Lupus, etc).
Isgs I hope you get your diagnosis soon! Thanks for info, my daughter is really struggling and most things come back negative, wondered how many other people out there and how long most people take for a diagnosis xx
alex_chris, hope your symptoms are now under control and you are feeling well xx
alex_chris, hope your symptoms are now under control and you are feeling well xx
Hey there, it took me 5 years to get diagnosed... my symptoms ranged from mild stomach cramps to agonizing pains that put me in bed for days, unexplained weightloss, lack of appetite and frequent nausea as well as achey joints....I had a barium follow through, bloods, urine tests and was for a while told it was just damage left over from my coeliac or functional pain until dramatic weightloss forced the gi I was under to order an MRI followed by a colonoscopy ... I notice you say your daughter has questionable coeliac in your signature.. do you mind me asking what males it questionable? I was diagnosed at 14 after a year of positive blood tests (200+) but negative biopsies. I hope you get answers soon!
The long answer would be it took me 10 years to be diagnosed (and I"m under 30, thats a big chunk of my life) but at that point the symptoms were all over the place and did NOT point to Crohns, though they can all be pointed there now.
Its been about a year since I started having major symptoms though, and I was diagnosed 2 weeks ago in the ER. I could have been diagnosed a year ago when everything started really happening, but we (myself, the surgeon, the internist and my family doc) all agreed that it was most likely Celiacs (because going GF solved almost all the immediate issue) and I declined further testing, like the scopes. If I had gone through with the scopes we would have known, and if I had realized that all the little "flares" I had over the last year were something bigger, the testing would have been done sooner, but everything was so easy to pass off as something else. Ovarian cyst rupture, virus, etc.
Its been about a year since I started having major symptoms though, and I was diagnosed 2 weeks ago in the ER. I could have been diagnosed a year ago when everything started really happening, but we (myself, the surgeon, the internist and my family doc) all agreed that it was most likely Celiacs (because going GF solved almost all the immediate issue) and I declined further testing, like the scopes. If I had gone through with the scopes we would have known, and if I had realized that all the little "flares" I had over the last year were something bigger, the testing would have been done sooner, but everything was so easy to pass off as something else. Ovarian cyst rupture, virus, etc.
From the onset of CD at the ripe old age of 50, it took the best part of 15 years to obtain a definitive diagnosis. In a sense this was rather academic because during this period several Gastroenterologists proceeded to treat me as a Crohn's patient.
What is difficult to understand is that while I have strictures in the ileum and all the hallmarks of the condition, numerous biopsies taken during colonoscopies were NOT indicative of CD. Apparently, histopathology results indicated an atypical outcome.
Nevertheless, chronic diarrhoea, osteoporosis and all the associated symptoms pointed to CD. The only time I have any sort of brief remission has been induced with the use of cortico steroids which IS indicative of CD. Got me buggered!
What is difficult to understand is that while I have strictures in the ileum and all the hallmarks of the condition, numerous biopsies taken during colonoscopies were NOT indicative of CD. Apparently, histopathology results indicated an atypical outcome.
Nevertheless, chronic diarrhoea, osteoporosis and all the associated symptoms pointed to CD. The only time I have any sort of brief remission has been induced with the use of cortico steroids which IS indicative of CD. Got me buggered!
Cat -Thank you this all sounds pretty familiar! The only thing that helped J to start with was Prenisolone, but the last time she was put on this she was so backed up that the symptoms didn't ease. I hope you stay in remission and really hope that my daughter's doctor takes her as seriously very soon!! x
valleysangel92, her bloods have always been negative for coeliacs, she had biopsies that came back with 'characteristics of coeliacs'. This was the diagnosis she was given with her old GI. Since going completely gluten free, her symptoms have got if anything worse! Her new GI does not believe that she even has coeliacs, but he doesn't know what is going on, apart from poor motility. x
hbrekkaas - I am glad you finally have a diagnosis! Good luck x
Merv - Steroids is the only thing that initially helped her too. Hope you get the right medicine now xx
Thank you all for your replies, it really is a difficult disease to diagnose. It is so hard with family who are constantly asking 'what is wrong with he?r'. 'Surely Doctors know best?'. 'If all tests are negative, it can't be that!' 'Why is it taking so long?' GRRR xx
valleysangel92, her bloods have always been negative for coeliacs, she had biopsies that came back with 'characteristics of coeliacs'. This was the diagnosis she was given with her old GI. Since going completely gluten free, her symptoms have got if anything worse! Her new GI does not believe that she even has coeliacs, but he doesn't know what is going on, apart from poor motility. x
hbrekkaas - I am glad you finally have a diagnosis! Good luck x
Merv - Steroids is the only thing that initially helped her too. Hope you get the right medicine now xx
Thank you all for your replies, it really is a difficult disease to diagnose. It is so hard with family who are constantly asking 'what is wrong with he?r'. 'Surely Doctors know best?'. 'If all tests are negative, it can't be that!' 'Why is it taking so long?' GRRR xx
Took 3 months to get a diagnosis. Tests that were done were the small bowel follow through, barium enema, CT scans with and without contrast, MRIs with and without contrast, ultrasound, stool samples, allergy tests, blood work, colonoscopy and endoscopy (scopes were done last so chances are they confirmed the diagnosis)... I'm probably forgetting something but it was 22 years ago. 
DustyKat
Super Moderator
I reckon you already know my kids stories so I will be brief:
Sarah took 18 months to be diagnosed. Her symptoms were not classic of Crohn's so IBD wasn't even on the radar. She had numerous blood tests, an ultrasound (of kidney's only), abdominal x-rays and an abdominal CT. The u/s did show a problem but after nuclear scanning she was given the all clear. Other than that all tests returned normal results. After 2 weeks of constant and worsening symptoms it all came to head with her becoming septic and requiring emergency explorative surgery, that is when she was diagnosed.
Matt likely had some very obscure symptoms for about 8 months, primarily mouth ulcers and looking fatigued before he developed further mild symptoms for one week. I asked that they do inflammatory blood markers on him (CRP & ESR). CRP was elevated. His symptoms abated but bloods were repeated the following week and the CRP was higher. The GP palpated his abdomen and could a mass in his RLQ. He said there and then he thought he had Crohn's. He was sent for an urgent ultrasound which showed thickening of the terminal ileum. A few days later he had an urgent gastroscopy/colonoscopy with Sarah's GI and he confirmed the diagnosis of Crohn's on completion of the scope. The following day he had a CTE to verify the extent of the disease. So about 2 weeks from first blood test to definitive diagnosis.
I do have some knowledge of the only other family member that has Crohn's that we are aware of, I shall refer to her as F:
F started with symptoms in her very early twenties. Her issues were primarily joint pain. I don't know what tests she had but she was diagnosed with Rheumatoid Arthritis and was treated accordingly. I dare say this helped her symptoms to a large degree but never fully resolved them. She also had intermittent abdominal pain and other issues that I am not fully familiar with. Anyway, this went on for 4 years until the abdominal pain became so bad they thought she had ruptured her appendix. She went for emergency surgery and apparently the surgeon took one look, said she has Crohn's and closed her back up. I don't know what he saw but perhaps he could feel and see the thickening of the terminal ileum and because there was no perforation or other complications went no further. That was quite some time ago now, ???10-12 years, she not had further surgery or a resection.
HTH!
Dusty. xxx
Sarah took 18 months to be diagnosed. Her symptoms were not classic of Crohn's so IBD wasn't even on the radar. She had numerous blood tests, an ultrasound (of kidney's only), abdominal x-rays and an abdominal CT. The u/s did show a problem but after nuclear scanning she was given the all clear. Other than that all tests returned normal results. After 2 weeks of constant and worsening symptoms it all came to head with her becoming septic and requiring emergency explorative surgery, that is when she was diagnosed.
Matt likely had some very obscure symptoms for about 8 months, primarily mouth ulcers and looking fatigued before he developed further mild symptoms for one week. I asked that they do inflammatory blood markers on him (CRP & ESR). CRP was elevated. His symptoms abated but bloods were repeated the following week and the CRP was higher. The GP palpated his abdomen and could a mass in his RLQ. He said there and then he thought he had Crohn's. He was sent for an urgent ultrasound which showed thickening of the terminal ileum. A few days later he had an urgent gastroscopy/colonoscopy with Sarah's GI and he confirmed the diagnosis of Crohn's on completion of the scope. The following day he had a CTE to verify the extent of the disease. So about 2 weeks from first blood test to definitive diagnosis.
I do have some knowledge of the only other family member that has Crohn's that we are aware of, I shall refer to her as F:
F started with symptoms in her very early twenties. Her issues were primarily joint pain. I don't know what tests she had but she was diagnosed with Rheumatoid Arthritis and was treated accordingly. I dare say this helped her symptoms to a large degree but never fully resolved them. She also had intermittent abdominal pain and other issues that I am not fully familiar with. Anyway, this went on for 4 years until the abdominal pain became so bad they thought she had ruptured her appendix. She went for emergency surgery and apparently the surgeon took one look, said she has Crohn's and closed her back up. I don't know what he saw but perhaps he could feel and see the thickening of the terminal ileum and because there was no perforation or other complications went no further. That was quite some time ago now, ???10-12 years, she not had further surgery or a resection.
HTH!
Dusty. xxx
Hi Niks,
It took me bout 3 months to be diagnosed. I had been having symptoms (fairly mild) for about a year before I asked my GP for a referral to GI. My GI initially thought it was IBS (as did I!), but explained that a diagnosis of IBS requires that all other causes be ruled out, so he proceeded with tests...
He did blood work (looking for elevated CRP and celiac), but everything was normal. He tested my stool, which was positive for white blood cells, but below the threshold for clinical significance. Next was the colonoscopy -- he actually gave me a choice between colonoscopy or flexible sig -- I chose colonoscopy because I figured if you're already going up there, you might as well go as far as you can! He found inflammation in the terminal ileum (which would have been missed, had I gone with the flexible sig), which was biopsied. The biopsy showed granulomas, which are indicative of CD.
So from the time I decided to see a GI (Jan 2009) to diagnosis (Apr 2009) was about 3 months... and that was mainly due to scheduling. From the time I started having symptoms (Jan 2008), it was about 15 mo.
It took me bout 3 months to be diagnosed. I had been having symptoms (fairly mild) for about a year before I asked my GP for a referral to GI. My GI initially thought it was IBS (as did I!), but explained that a diagnosis of IBS requires that all other causes be ruled out, so he proceeded with tests...
He did blood work (looking for elevated CRP and celiac), but everything was normal. He tested my stool, which was positive for white blood cells, but below the threshold for clinical significance. Next was the colonoscopy -- he actually gave me a choice between colonoscopy or flexible sig -- I chose colonoscopy because I figured if you're already going up there, you might as well go as far as you can!
He found inflammation in the terminal ileum (which would have been missed, had I gone with the flexible sig), which was biopsied. The biopsy showed granulomas, which are indicative of CD.So from the time I decided to see a GI (Jan 2009) to diagnosis (Apr 2009) was about 3 months... and that was mainly due to scheduling. From the time I started having symptoms (Jan 2008), it was about 15 mo.
scottsma
Well-known member
- Location
- Tynemouth,
I'm v.lucky.I presented with blood and mucos and D.Had sigmoidoscopy and biopsies and was diagnosed and on meds within 4mnths.That was 6yrs ago.I've had a few flares in that time,but I can usually sort them by upping my meds.As I said,I'm v.lucky.(But not complacent)
SarahBear
Moderator
- Location
- Charleston,
I started showing symptoms at around age eight. I was diagnosed a month before I turned 17, so it took about nine years. However, the delay was a result of my mother assuring my doctors that I was faking it. It was probably about six months from initial GI appointment to diagnosis.
