Crohn's Disease Forum » Support Forum » Undiagnosed Club » All the signs, no diagnosis.

07-28-2013, 11:58 PM   #1
Join Date: Jul 2013
Location: New York, New York
All the signs, no diagnosis.

Hi everyone.

So... here's my story. About three years ago now, at 20, I had my first episode of what we think is Crohn's. I seem to have the typical signs and symptoms, but show up negative on inflammation tests and colonoscopies.

Three years ago, I had diarrhea pretty constantly, and didn't think anything of it. Slowly I developed pain in my lower righthand quadrant of my stomach. Eventually it got so bad I went to the doctor and he told me to go to the hospital in case it was appendicitis, even though the pain didn't seem consistent with it. I went to the hospital, they gave me a sonogram and scan, and determined it was terminal ileitis. They put me on a regimen of metronidazole and cipro, and it went away.

I was mostly fine for the next year, with minimal symptoms. Then almost precisely one year later, I feel the familiar pain, again diagnosed as terminal ileitis. Put me on the antibiotics, since I seemed to have responded well the first time, it gets slightly better, but lingers for another month or so.

They give me a colonoscopy (which I get aspiration pneumonia from, but that's a whole other story). My results come back completely normal (except for a small amount of irregularity towards the anus).

Blood tests show nothing strange, neither do stool samples.

Slowly since that last flare up, my symptoms have come back, without pain in the ileum. Now I have diarrheah about 50% of the time, but it seems on and off. No relationship with food. Originally it was mostly soft stool, now all water is common. There's a lot of mucus in the stool when I have normal BMs, and occasionally a small amount of bright red blood.

On top of this, I have night sweats, itching around the anus, and canker sores in my mouth almost constantly.

My doctor was stumped, as I show all of the classic symptoms of Crohn's but he can't seem to diagnose it through any tests. I've since switched doctors to one who has done a huge amount of research on Crohn's (luckily I live in NYC where this was possible). He also says it seems highly likely that it's Crohn's, but I can't help but wonder if there is another explanation.

Also, recently, I've developed some new symptoms. I have nausea for about two hours before diarrhea sets in. I can always tell it's coming. Also, I've been having extreme nausea from brushing my teeth (sometimes resulting in vomiting).

I guess my question is, is Crohn's usually this hard to diagnose? Do you think it could possibly be something else?
07-29-2013, 02:40 AM   #2
allieinwonder's Avatar
Join Date: Oct 2010

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Hello Mspinelli91,

Welcome to the forum, and to the undiagnosed club! Although I am sorry you are here under these circumstances, you have come to a place where people understand what you are going through.

Over the years I have been on this forum, I have seen people who have had this much trouble get a diagnosis. I myself took 8 years from first symptoms to diagnosis, but this is because mine was not crohns, even though it looked and sounded like crohns.

Your mouth ulcers make me think you might have something other than crohn's as well. I have behcet's disease, an autoimmune disease that attacks blood vessels anywhere in the body. The first sign of behcets is usually mouth ulcers, and part of the diagnostic criteria is having three episodes or more of mouth ulcers in one year. It can attack anywhere in the digestive track just like crohn's as well, leaving inflammation and ulcers. All of my colonoscopies were normal as well, and my rheumy said this is because the inflammation and damage is mostly on the outside layers of the intestines, which wont show up on a colonoscopy. Behcet's is very rare, especially in the United States, so most doctors are not even educated about the disease. If you want more information of the disease, the american association webpage link is in my signature. The good news is, if you have behcet's, the only Behcet's expert/Behcet's center in the entire USA is in New York. You wouldn't have to travel far to get some of the best treatment in the world.

Either way, if you have crohns, behcets, or another form of IBD, you need to just keep looking and keep fighting for a diagnosis. I know how frustrating it can be, but you know something is wrong. Your doctors seem to know something is wrong too, with your continuing evidence in your terminal ilieum. Take that and make sure a doctor figures it out. See other GI's, see a rheumatologist, basically keep looking for answers. I promise there is an answer out there for you!
DXed with Behcets disease December 7th, 2012. Behcets disease is a rare autoimmune disease of the blood vessels that can mimic Crohns.

DXed with Polycystic Ovarian Syndrome (PCOS) November 20th, 2017.

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