How were you diagnosed?

[tayandky]

Since we all have different scenarios, I was seeing if everyone wanted to share how they were diagnosed. It will be interesting to see what tested showed it and what tests didn't show what they were diagnosed.

Thanks!


me-
I had a colonoscopy/endoscopy 2 yrs ago and nothing showed
I had a CT scan (Entreography) that showed inflammation in my small bowel
I had blood work (Prometheus) I tested positive for Crohn's
5/26 I'm scheduled for a pill cam

 

[Entchen]

Interestingly, once I was able to convince someone to start testing for Crohn's, virtually all markers / possible signs / etc. indicated CD. This is in stark contrast to the experiences of many here. In my case, the lag time of several years was getting past the docs who claimed having D up to 20x/day and vomiting the equal amount was "just normal for some people" or "probably an ulcer, so don't get stressed."

Hmmm, let's see if I remember the tests (I have notes filed away somewhere but it's late at night and I'm sleepy, lol):

- raised CRP and ESR across several months
- anemia -- I was tested multiple times for a blood disorder because the few red blood cells that I had were immature and misshapen
- small bowel series with follow through showed abnormalities, although not quite consistent with Crohn's
- barium enema strongly suggested Crohn's (at this point, my GP considered me diagnosed, although the GI disagreed)
- and then the colonoscopy clinched it

 

[DustyKat]

Sarah undiagnosed for 18 months:
Blood tests - normal for almost 18 months.
Ultrasound - ?PUJ obstruction, lead to nuclear scan - slowing but otherwise normal.
Blood test - 1week before surgery - increased pancreatic enzymes - ?pancreatitis - wrong.
Abdominal X-ray - normal.
CT Scan - normal.
Emergency surgery - laparotomy and appendectomy, ended up with resection and diagnosis.

Matt diagnosed in 2 weeks:
Blood tests - highly elevated CRP.
Ultrasound - thickening of the terminal ileum.
Colonoscopy - CD visualised in the terminal ileum.
CT Enterogram - confirmed diagnosis and extent of disease, 100mm at the time.

Dusty.

 

[Grumbletum]

Positive urine tests for repeated UTIs
Ultrasound - showed thickening of the small bowel
Barium meal & FT - showed cobblestoning in the terminal ileum ' consistant with Crohn's'
Bloods - raised CRP
Have my first GI consultation on Monday.
Helen

 

[archie]

I had mild symptoms of gastritis initially no other symptoms of CD then rapidly became unwell... several doc's misdiagnosed it at 1st then a consultant diagnosed it as a possibility from my history.
CRP raised, WBB raised, ultrasound clear, 1st CT scan showed thickening of 1 ft of bowel, 2nd CT showed abscess and perforation, small bowel series was consistant with crohns, colonoscopy consistant with crohns and then finally surgery biopsy confirmed it... and now everything back to normal (for the meantime!!!)

 

[Welsh-bird]

For me it was a few months of bleeding before seeing my GP. (1999)
Gastro apt the following week and she suspected UC.
Colonsocopy 2 weeks later and confirmation of diagnosis.
No raised CRP, all bloods fine. Little pain but loads of urgency, blood and mucus.
In all a quick and painless diagnosis.
Then in April 2011 dx was changed to CD following a total colectomy and pathology results.

 

[carrollco]

Bleeding, severe diarrhea led to colonoscopy in which the ulcer biopsy suggested Crohn's. Blood tests also positive for Crohn's and then I had the PROMETHEUS® Crohn's Prognostic test done where I matched all the markers and was told I had 53-85% chance of experiencing all the lovely handiworks of this wonderful disease. (snark) Which led to an aggressive control of my current flare by the use of Humira and 6MP and Prednisone which I'm tapering off.

 

[Vellanki]

Diagnosis

I was diagnosed as a Crohn's patient, by an Indian doctor who earlier worked in UK. Indian doctors wouldn't want to call it Crohn's and I had to go from doctor to doctor using anto biotics each time with little help.

In 1995, Crohn's is not a common occurence in India.

 

[cdunham]

Been dealing with it since I was about 13. I'm now about to turn 39. I decided to get healthy and make all of my dr appts. Well, last Thursday I had my endoscopy/colonoscopy and I was told that I had stomach inflammation and either UC or CD. Biopsy would confirm either one. Yesterday, I received the CD confirmation and started 4 Lialda this morn. I also started Prozac, Adderall and Provostatin for High Cholesterol on Friday. Tomorrow morning I get the small bowel series done to check what damage is going on there and Friday Im getting the Prometheus Crone's Prognostic Test done. I also started taking Juice Plus today.

 

[LOSTnut]

Well, mine came out of the blue and left field. Besides being lactose intolerant I never had any symptoms. Then, one day, after eating a lot of salsa I had to go oo: ... and pretty much didn't get off for 6 weeks.

After losing 20 lbs and being severely dehydrated with low potassium levels and an ovarian cyst, I finally got admitted to the hospital. After 10 days of tests for other illnesses they finally did a colonoscopy and endoscopy and diagnosed me with Crohn's.

I guess, in that sense I was lucky because I never had to deal with test after test and not being diagnosed.

 

[lola99]

I started having rotating constipation with dirrehea in 2006 and starting getting fissures. I had a colonscopy in 2006 and the gi just said i was inflammed and the warning signs of ibs and put me on zelnorm which was later taken off the market because it was causing heart problems with older people i heard. Well the bm problems went away when i got pregnant with my first son and then in 2009 i started having horrible abdominal cramping and then the start of this year after having my 2nd son and being on tons of pain killers from a complicated birth i got a partial blockage from intestinal swelling and had to go to the er. They did a ct scan and said they think it is crohns. Then i spent three days in the hospital on antibotics,asacol and potassium. Had another colonoscopy with biopsies and they found inflammation and the gi said my small intestine was too swollen to look into. Now im on entocort 3mg 3 pills in the morning and 800 mg asacol two pills twice a day and weaning from predisone 20mg down to 5 mg. I am supposed to have another colonscopy in two years to see if the medication has helped. So far I'm feeling alot better with only occasional pain a few times during the day. The side effects from my medication are making me feel bad though. Getting up to go pee at night, acne,moon face/small buffalo neck, back pain and just feeling weak.

 

[Debra]

the majority of my life.....

Summer of 1981 was one of my life changes. Went from 145lbs to 115lbs in a month, used LOTS of tp and wanted to sleep all the time. My mother was very angry with me. It was after I explained to her that I was literally sleeping on the pot that she realized I needed to go to the doctor.

I went to many, MANY different types of doctors..that is another story altogether:yfaint: Finally she took me in to my parents internal specialist, he asked me three questions and scheduled an upper and lower GI and wanted to see me afterwards. He suspected and wanted confirmation before telling me his thoughts.

Confirmed- but as ulcerative colitis. The doctor was able to prescribe medication and with a moderate diet I did well for many years. Had a flair up just before my wedding (5 years after dx- stress of dealing with my new mother in law). It was during this time dx was changed to crohons after a colon scope (spelling bad- you get the idea tho:ylol Predisone was prescribed and once again no problems. Keep in mind I ate conservatively- maybe salad once a month, not much mexican- lots of roast and chicken.

Bumping foward 12 years. June 2003 dx with Large B Cell Lymphoma. Boy the treatments for that cancer sure helped my crohons- I could eat literally anything and not worry about the runs......

I am now cured of the cancer, but my crohons is flairing. I have to take my meds daily and eat even more bland than before. Doc wanted me to start Remicade. I am not sure if this is what I want to do. Will read your stories and then decide. Thanks for listening!

Debra

 

[paperbackbutterfly]

I went down to 4 and a half stone and was told by my GP I was anorexic. I insisted he sent me to the hospital (eventually) and the consultant told me as soon as I walked in he knew what was wrong with me ( as it turned out his wife had Crohns) I went straight into hospital and had tests and I did have Crohns. Quite a bad attack. I started on prednisolone and improved within weeks. I was very lucky that I saw the right consultant. I think I wouldn't be here now if I had let the GP persuade me I was mentally ill. He did apologise when I was diagnosed but I still changed doctor.

 

[lookame]

I was in a drug trial when I became severly symptomatic, the doctor in the trial referred me to a GI and they instantly told me the it could be one of three things crohns disease, ulcerative colitis or colon cancer and prescribed a colonoscopy for the week after. Which concluded I had inflammation in my desceding colon and transverse colon.

-First colonoscopy Aug 2009 showed inflammation told it's most likly UC would get back to me and didn't
-Went to the ER given a CT scan showed colon was inflammed pills were prescribed which won't help me(and didn't)
-Went to the ER again, anouther CT scan showed colon was still inflammed, given more medicine which wouldn't help (and of coarse didn't)
-Went to the ER again, blood tests revealed I was severly anemic, decided I needed a transfusion, admitted to the hospital, given a second colonoscopy which showed severe inflammation throughout my entire colon labelled severe UC (aug 2010)
- Sept 2010 received a call and a letter saying biopsies and blood tests show crohns

---final diagnosis...I'm still confused my doctor goes ba ck and forth between crohns disease and UC so I just say it's both lol

 

[Meg]

I had a colonoscopy following an emergency apt. for rectal bleeding. The GI saw an inflamed cecum, followed that up with a CT scan with drink and IV which revealed up to 2 feet of inflammation which I assume is in my small intestine just above my cecum. I'm on Entocort for 4 months. I have lots of headaches always at night and lots of flatulence which might mean my intestine is getting wider but was narrow? No diarrhea as such but I do go 2x before work. I am so tired from noon on that I could easily drop to the floor and take a nap at work. Is this Entocort or CD?

 

[Joleen23]

I was misdiagnosed for a year as having stress. When i finally managed to convince my old GP something was wrong , she agreed (unwillingly) to bloods , which showed raised markers of inflamation and iron deficiant aneamia. I was then refered to a blood specialist (Was tested for multiple myeloma - scary! but was all fine, he suspected Crohns) and then a surgeon for a fissure i had, he askd if i suffered with any other symptoms. Told him i had D (sometimes bloody) Mucus, weight loss, mouth ulcers, anemia, fatigue , he decided to book me back in for a sigmoidoscopy. He took Biopsy's of polyps (thought it was ulcerative Colitis from first glance) Came back as positive for Crohns Colitis and was started on Pred and Asacol. After that had a Barium meal X-ray done, which showed no disease in small bowel and had an MRI done recently, waiting to hear back from that. Been in hospital a few times but feeling relatively good now which i think is due to the Aza

 

[HeatherMN]

I had a bout of food poisoning when I was about 22 weeks pregnant, spent the rest of the pregnancy with diarrhea and throwing up almost everything I ate. It continued even after the delivery, until a postpartum checkup when I demanded some further help. My OB had told me it was from hormones and the stress on my body from carrying twins. They were delivered 6 weeks early, but healthy.

I got an appointment with a GI within a week (after crying on the phone to them), got scheduled 2 days later for a colonoscopy (sent home from first appt with prep) and was diagnosed that same day. I tried Pentasa, then Asacol, then I got a dose of Remicade and was in remission with only Imuran for a maintenance med for years.

I started having symptoms again 4 years later, so I had another colonoscopy, a SBFT with barium and was put on a higher dose of Imuran. It didn't completely keep my symptoms under control, so I had another colonoscopy and was put on Humira. This was with a different GI than my original.

Last year I was having issues with my stomach, bloating and fullness after even small meals. I had another colonoscopy and MR Enterography to check for strictures again. I now have Crohn's in my small intestine, and a diagnosis of IBS. (Which is BS, personally)
For the most part, Humira keeps me in control, but I have occasional flares from stress or eating the wrong things. I have to eat smaller, more frequent meals and avoid certain foods.

 

[Jules mac]

I first had really bad reflux and felt bloated constantly for years. My doc kept putting me on omeprazole and said 'too much stomach acid'. I developed lumps all over my kegs which turned into what looked like bruises and was referred to a rheumatologist or took loads of xrays constantly and again prescribed omeprazole. Then started going to loo on the hour every hour. Hubby got more concerned and when i moved he made me change my doc who diagnosed IBD straight away. An endoscope, colonoscopy (which showed alot of inflammation), barium enema and a sigmoidoscopy CD was diagnosed and put on mezalasine and prednisolone which worked wonders and was symptom free for 2 yrs. now had 2 major flare ups and hospitalised both times and trying to get back off the prednisolone whilst starting azo. Thank god for hubby in first place for saying 'this is not normal' and my new doc!! Currently awaiting another colonoscopy!

 

[soretum]

I left it until the last possible second to go to the doctor by which time I had had D for 5 months, weight loss, fatigue, no appetite, erythema nodosum, scleritis, raised white cells and CRP, high calprotectin etc etc...was referred straight to a GI, had a colonoscopy within a month and got my chron's colitis diagnosis and medication the same day. Still waiting for an MRI to check out small bowel.
2009 and 2010 my tummy was 'off', very bad bloating and mucus and I knew things weren't right, often wonder if I had have gone to the doctor about it then if I would have been diagnosed or if it would have been written off to IBS.

 

[AndiGirl]

It took a long time for my doctor to diagnose me. Some of the results of my tests should have been big hints.

Upper GI- showed areas of my small intestine that were worn down
Ultra Sound- showed thickened areas in my bowels
Colonscopy- showed inflammation in my ileum
Blood Tests- Elevated SED rate, anemia
Prometheus Lab Test- Tested positive for Crohn's Disease
Weight loss without trying

 

[stefan]

As always, I was a bit of an odd one with my diagnosis. I was always was, and to an extent still am asymptomatic, other than a bit of bloating which we never knew the cause of.

I was diagnosed in 2005 when my dermatologist picked up a small skin lesion on my arm which was linked to IBD, so referred me to my now-GI for a colonoscopy, where my large bowel was found to be moderately ulcerated.

There were other inflammatory things going on at the time, so we had actually been treating the IBD inadvertently anyway, which probably helped mask it a bit longer.