Questions about being diagnosed.

[Tummy Talk]

I've had four major flares of diarrhea and upper and lower right abdominal pain in the past couple years lasting 3-4 months each. I've asked questions and even had normal abdominal ultrasound and normal colonoscopy (with no biopsies done) but never took the time to push until October. I've thought for years that I had gallbladder problems but that ultrasound was interpreted as normal with no stones. Finally, they did a HIDA scan which found chronic cholecystitis with no stones which is unusual. While going over the results, the GI doc told me he felt the severe diarrhea I've been dealing with was most likely a totally separate problem and I'll be having a colonoscopy with biopsies and endoscopy on January 3 delayed until then because of insurance issue. That's the background and here's the question.

Finally after all these months of the current flare things seem to be settling down just a little. My concern is that by January 3 I might be pretty much over this bout. If I have chrones as doc suspects, will it still show up in a biopsy even if I'm not in an active bout.

Also, are there others out there who are dealing with gallbladder issues too. I'll be having mine out in January, but they want to do the upper endoscopy and colonoscopy first to look at the whole picture.

It never occurred to me that it wouldn't until I visited this forum, but obviously getting an accurate diagnosis is no easy task.

So glad to find this forum and ask some questions!

 

[JMcMillen86]

Yes, it'll show up. It's not something that comes and goes in and out of your body. If you have it, you have it. Flares come and go from time to time, but if the flares are caused from Crohn's, then Crohn's will show up no matter what. They can even test for Crohn's in blood work, so maybe that's something you should look into getting done as well. Hope everything works out for you, best of luck!

 

[Tummy Talk]

Still confused.....

Thanks jmcmillan for the reply. That's reassuring. BUT, I'm still confused. If one can be diagnosed with a simple biopsy during a colonoscopy, why do people go years without a diagnosis? Are we talking about doctors who just don't listen......or HMO's that don't pay......or what???

 

[Anthonyx07]

Thanks jmcmillan for the reply. That's reassuring. BUT, I'm still confused. If one can be diagnosed with a simple biopsy during a colonoscopy, why do people go years without a diagnosis? Are we talking about doctors who just don't listen......or HMO's that don't pay......or what???

Yah it's probably just because doctors don't listen or people don't go get the tests done. They can tell by simply doing a biopsy and checking the cells. For me it was easy because I was getting severe pain in the lower right quadrant of my abdomen (terminal ileum) and my dad, aunt and uncle all have crohn's so it was pretty obvious. They did the colonoscopy right away.

 

[crazycanuck]

Don't worry they can still see it. Plus with the colonoscopy they took pictures of mine and I wasn't truly flaring at the time of my diagnosis either. The inflammation and ulcers or whatever applies to you will still be there if your flaring or not.

A flare just means a time when your symptoms are worse than usual. During these times the inflammation gets worse, the intestines often swell and if you have ulcers they become irritated which will all cause the combination of diarrhea, vomiting, pain, blood or whatever.

 

[Anthonyx07]

Don't worry they can still see it. Plus with the colonoscopy they took pictures of mine and I wasn't truly flaring at the time of my diagnosis either. The inflammation and ulcers or whatever applies to you will still be there if your flaring or not.

A flare just means a time when your symptoms are worse than usual. During these times the inflammation gets worse, the intestines often swell and if you have ulcers they become irritated which will all cause the combination of diarrhea, vomiting, pain, blood or whatever.

Hey crazycanuck I live in Langley as well! Small world

 

[StarGirrrrl]

I'm afraid I will offer some disagreement here. People go years without a dx (and having all the tests) because CD can be so hard to find. If it's in the large intestine it is much easier since a scope can cover the whole area. With the small intestine there is around 15 ft that cannot be reached by scopes (pill cam in that case, but it's an expensive test and can be hard to get)It seems it can appear and dissapear. And CD can occur from mouth to anus. Also people with established IBD having a raging flare can and do have normal bloodwork.

A member on here recently diagnosed had 2 pill cams: the first showed ulceration and the second was totally normal. She had numerous other tests that were normal. Then some bloodwork finally came back abnormal and the Dr decided with that and the first pill cam it was CD (he attributed the first to being in a flare and the second not in a flare) This was all after a few years of testing coming back normal (which had been frequent and intense the last few months)and symptoms if my memory serves correctly.

OP, please feel free to stop by the Undiagnosed Club for some support. Then I think you will see it is not always easy getting a dx It is not as simplistic as people not getting the tests or Drs not listening. Many of us in the club have had all the tests and then some, and still not enough for a dx. Drs not listening I can agree with though!