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Crohn's Disease
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Posted 12/9/2012 4:34 PM (GMT 0)
I've been reading different posts around the forum and have noticed all the different ways people were diagnosed.

So I'm curious, how we're you diagnosed? And how long did it take to finally get the Crohn's diagnosis.

It took 2 years for me after several misdiagnosis and of doctors thinking i was either faking it or had gynecological problems. Until finally the ball started rolling in the right direction when I went to a gyno and he was the first one who told me what i had was a GI problem and he referred me to a colorectal surgeon. (My crohn's started out with fistulas and abscesses in the perineum not frequent BMs or abdominal pain, that's why i never thought it was a GI problem. those pains came later)

That colorectal surgeon i went to is the one who brought up The words Crohn's disease for the first time. And when operared, I was diagnosed initially by a biopsy of the abscesses and found granulomas. Along with a colonoscopy and endoscopy a bit later where they found a lot of inflammation in the terminal ileum( which they said is the most common spot for Crohn inflammation) along with inflammation in other parts and some mucus and blood. I think they found granulomas there also. But they said the granulomas found cinched the diagnosis.

So that's my story :-) what's yours?

Post Edited (Lovely985) : 12/9/2012 12:29:53 PM (GMT-7)

Posted 12/9/2012 5:56 PM (GMT 0)
I had IBS with constipation all my life. Around 6 years ago, ( age 48) I was having shortness of breath and chest pain. I went to the ER thinking there was something wrong with my heart. my heart was fine, but it turned out I was severely anemic with a hemoglobin of 7. They did a colonoscopy, upper endoscopy and barium swallow and couldn't find the source of the bleeding. They assumed it was an old bleed from using ibuprofen, gave me a iron infusion, and sent me home. about 6 months later, I became anemic again with blood in my stool. (NO abdominal pain, D or excessive C through any of this) This time they did a pill camera swallow test and found a bleeding ulcer in my small intestine. A follow up colonoscopy with a biopsy confirmed Crohn's in my terminal ileum. I also had the Prometheus blood test which confirmed Crohn's. The abdominal pain and problems followed later.
Posted 12/9/2012 6:19 PM (GMT 0)
My diagnosis was about as low-key as it's possible to get. The diarrhoea began somewhere between Christmas Day and New Year's Eve in 1999 - no pain, bleeding, fevers, or any other signs of Crohn's, just loose/watery stools. Naturally enough I put it down to a reaction to Christmas excess, but when a few weeks later the diarrhoea still hadn't gone away, my mum persuaded me to go to the GP. I saw a locum GP who was actually competent. He arranged for the relevant blood and stool tests, then, later on, I had a colonoscopy and barium follow-through. Finally, in the summer of 2000 I got my Crohn's diagnosis.

Very low-key, like I said. I didn't even really believe I had Crohn's; I just thought the diarrhoea was something which would go away at some point and that would be that. It was weird how mildly my disease started and stayed almost that mild for five years at least. And then got, like, severe almost within a matter of weeks.
Posted 12/9/2012 9:10 PM (GMT 0)
I went from perfectly health and normal BMs to over 20 extremely bloody BMs per day in about a week. At first we thought it was c. diff. (I'd had it several months before because of too many antibiotics). Then we tested for other things. After a month I had a colonoscopy and was diagnosed.
Posted 12/9/2012 10:41 PM (GMT 0)
Thought I had IBS so went to the GP. She found a mass in my abdomen during an exam. We feared it could be cancer or something, so had a CT scan and then a colonoscopy which showed inflammation, (had the cobblestone thing going on and ulcers), in the TI. Dx within a few weeks. GI wanted to load me up with prednisone but I insisted on Entocort. Good thing as I found out I already had osteopenia.
Posted 12/9/2012 10:42 PM (GMT 0)
Lovely, how are you feeling?
Posted 12/9/2012 10:59 PM (GMT 0)
My symptoms and Crohn's related problems started in my early 20's. Two pregnancies and even more unusual problems [multiple kidney stones, uveitis, peripheral arthritis] plus the diarrhea and gut issues. Doctors over the years always said spastic colon or IBS after only minimal examinations. Fast forward 30 years and I went to my GP because I became housebound by the 20-30 BMs a day. He didn't even know I had constant gut problems for years because I never told him during my 6 years with him. I figured why bother since every other doctor always dismissed it.

He didn't dismiss it and I went for a colonoscopy and CD was found in my TI.
Posted 12/12/2012 3:16 AM (GMT 0)
Routine check up from stool sample indicated blood in stool and my blood work indicated mild anemia. So ordered a colonoscopy. It should a few mild ulcerations at the TI. Dr biopsied from the site but told me he was not sure. Sure enough biop said crohn's. That was 14 yrs ago.
Posted 12/16/2012 10:24 PM (GMT 0)
I was in school full time and working full time, stressed and eating "on the go" quite a bit b/c I had no time. I noticed I started having more diarrhea, which was rare for me because before I got sick, I hardly ever went to the bathroom, maybe 1 or 2 times a week. I was also nauseated all of the time, especially in the morning. I was throwing up almost every morning, to the point I thought I was pregnant! I also thought maybe it was just from eating poorly for a few months and being so overworked/stressed.

It turns out after they first thought I had IBS, they tested me for celiac disease and when that wasn't it, I had a colonoscopy / endoscopy at the same time, confirming I had Crohn's. That was 5 years ago and now I've got more symptoms creeping out that I didn't know were even Crohn's related, such as hives. This disease is so frustrating at times!
Posted 1/4/2013 1:52 AM (GMT 0)
I guess I was lucky. Mine started with a New Years resolution to loose weight. I started eating a bunch of salad and my bathroom trips became a lot more frequent. I chalked it up to the salads. After a week I went off the salad hoping to get things back to normal. Nothing worked. After almost a month I went to the urgent care at my healthcare center. The dr spoke with me, did an exam and said " I think it's Crohns". I was beside myself because I never heard of this before. She set up an appt with my gastro and shortly after his exam and some testing confirmed she was correct. While I am very thankful my diagnosis was quick for CD standards, finding the right treatment plan took a year (still quick from what I read on most posts) but I can tell you it was the longest year of my life. Current treatment still works after 3 years so I can't complain.
Posted 1/4/2013 4:53 AM (GMT 0)
I had symptoms at the age of 7, had many hospital stays for weeks at a time, the longest being 2 weeks. I had been sent to a Psychiatrist as it was believed I may be suffering from a mental issue, that turned out to be fine.

Doctors were stymied as to what it could be. At the age of 13 I went to an ER, severe abdominal pain, diarrhea, vomiting, running a fever and completely dehydrated. The ER physicians had thought my appendix was about to burst and sent me off for emergency surgery. Turns out that it wasn't my appendix which they removed anyway but with the surgery, it was revealed I had Crohn's disease.

So I was undiagnosed for 6 years and had surgery that wasn't required. No one in my family had Crohn's or IBS. A few years after my diagnosis, my grandmother developed the disease in her early 70s.

Edit: I should add, symptoms first appeared at 7 which had been 1973 and diagnosed at 13, 1979.
Posted 1/4/2013 12:45 PM (GMT 0)
All my life (at least I remember back to about age 5 hehehe) I had issues that went from really bad C to rushing home from school with D.  In my famiy it was known as the "family stomach".  Fast forward to 1990 and I am 24 and fat and I started eating what was proported as "the healthy way to eat" and loaded up on salads and high fibre muffins (the family diet was potato and bland meat and bland foods---guess they knew how to care for a bad gut without diagnoses!) and soon I was laying in my bed with extreme pain.  Turns out I ruptured my guts and eventually did go to the ER with a suspected ruptured appy...opened me up and found a mess that they fixed and biopsied.  Always say I was lucky because I was diagnosed within hours of complaint.

Posted 1/5/2013 9:07 AM (GMT 0)
I was diagnosed when I was 16 and a junior in high school. The symptoms started out of nowhere. I remember having horrible pain when going to the bathroom and soreness, tenderness, and unbearable pain after I was finished. My parents noticed I was losing weight fast. My doctor had me go through multiple tests like blood work, stool tests, barium x-rays, and a endoscopy. The endoscopy revealed the absecces and fistulas around my anus and lower vulva which was causing the pain down there. I had adobminal pain and cramps everyday and fatigue and missed school alot. I was diagnosed with moderate Chrohn's Disease and I had never heard of it before. It was very scary. I'm 23 now, married and taking Remicade for the symptoms.  
Posted 1/7/2013 3:53 AM (GMT 0)
I was diagnosed at 21, but started having symptoms at 19. I was having up to 20 BMs a day (up from my normal 1/day prior) and first went to my GP who gave me a handful of antacids and then a GI who blamed everything on my birth control. It took a call from by OBGYN to get my GI to do a sigmoidoscopy and he said I had proctitis and gave me Asacol. My mother was unsatisfied with his care, so I went to a new GI. At the first appointment we talked about my symptoms and he talked about possible medications for the proctitis. I asked, "Will this make my hemmoroids go away?" To which he informed me that I was rather young to have hemmoroids. He asked to see what I was talking about and said, "No, that's a fistula. I think you have Crohn's". I had a colonoscopy a few days later which confirmed it. If the orniginal GI had done a full colonoscopy he would have seen the Crohn's as well. My Crohn's was pretty severe and I was just bearing it because every doctor was minimizing my symptoms and complaints.

If you are young and a woman, more likely that not you will get the run around. I tell this to all of my friends. You need to be your own best advocate (or in my case have a very pushy mom) because it's too easy for doctors to minimize your complaints. I love my GI for finding out what was wrong with me. And since I dealt with the symptoms for so long before being diagnosed he thinks I am Ms. Stoic and takes all my complaints seriously now (I actually feel like I have turned into quite the baby in my old age - but I have a full time job, a house, and a family . . . No time to lie on the couch in pain and feel sorry for myself anymore!)
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