New here....getting positive crohns tests and negative ones. im confused

[cathomas]

new here....getting positive crohns tests and negative ones. im confused

Hi. my name is Catherine. I have alot going on right now and am so confused with what the doctors are telling me. In June of 08 i had a colonoscopy, which showed inflammation in the terminal ileum. They took a biopsy which came back unspecific. The Dr then ran an IBD panel, which the marker came back positive for crohns. From there they did a Capsule endoscopy, which showed adema and inflammation throughout my whole small intestine. He said from the pictures they saw that he believes its Small Bowel Crohn's. And I was put on 2000mg pentasa daily. After that I did the Promethius Serology 7 test, which came back negative. I was still having pain, so they switched my meds and put me on Entocort EC 9mg daily, which i started a month ago. The doctor then said i needed a double balloon endoscopy to properly diagnose me and needed the biopsies from the small intestine. I went to a different doctor who specialized in this type of endoscopy. The test was dont yesterday and the doc that preformed the test said everything looked normal so there was no need to do biopsies. Could the steroids have healed my intestines? and why didnt he still take biopsies? sorry about the LONG paragraph. I just dont know what to do. should I get a second opinion?:depressed:

 

[Colt]

You have crohn's disease. There's not really much room for argument. There's no other cause for having such an extremely large part of your intestine inflamed without another blatantly obvious problem. Crohn's disease is one of the hardest medical conditions there is to diagnose. There are no yes or no tests for CD. Diagnosis is made by symptoms and the presence of inflammation or ulcers/scar tissue caused by inflammation. It only needs to be seen once to be considered crohn's disease. Seen multiple times (such as 2 in 3 scopes for you) the diagnosis is pretty much irrefutable.

Even in confirmed cases of crohn's, colonoscopies only show inflammation 1 out of 6 times. Treatment will very likely cause you to not show inflammation as inflammation is difficult to see even without anti-inflammatory drugs.

The Prometheus test is used to differentiate between crohn's disease and ulcerative colitis. A completely negative Prometheus is in no way a negative for crohn's disease. The fact that you had inflammation in the small intestine and it was not restricted to your large intestine conclusively rules out ulcerative colitis. Besides, an IBD panel and the Prometheus test are the same thing. Someone's wrong about your results anyway.

They should have done biopsies regardless. It wasn't going to hurt anything. Crohn's disease very often is in a state where the inflammation is only visible under a microscope. I work with doctors all day long and I can assure you, the majority do a really bad job. Just because a doctor says something does not mean it's true. If someone has shown inflammation in the past that's a reason for a biopsy any time you find yourself in that person's intestines. Doctors fall into the trap of; if you're not bad enough to be hospitalized you're not worth their time. To be frank, that 'specialist' was an idiot.

Crohn's disease is so incredibly difficult to diagnose in large part because most of the time it's invisible and it changes rapidly. It can be detectable now and in an hour it's gone, and then 2 hours from then it's back. It takes a lot of dumb luck to do the testing during that time.

Also, the diseased tissue is not always on the interior surface of where they happen to be looking at that moment. The inflammation can be anywhere in the digestive tract and that includes the exterior surface that would only be visible by opening up the abdominal cavity and looking, or even the middle section of tissue that is not visible with anything short of cutting the intestine in two in the spot where it's inflamed. Of course that inflammation is also usually in seemingly random splotches all over the place and given randomly gathered biopsies it's like a game of shells.

Crohn's disease is something where it's nearly impossible to say that you don't have it, but when it is caught red handed you know it's there. Frankly yours has already been caught red handed and it shouldn't be a debatable matter anymore.

Unfortunately we run into another issue where Crohn's Disease is very complex and the large majority of doctors just aren't smart enough to deal with it so they make blatantly bad calls. The average Crohn's patient is misdiagnosed 6 times before finally getting the correct diagnosis. That's an average. Include cases where people refuse to go to the doctor about their embarrassing potty issues until they end up in the hospital in a severe condition requiring surgery, and you can imagine how many misdiagnoses that leaves for those of us who go to the doctor when we first start getting sick.

 

[cathomas]

thank you so much for writing back. i just feel lost. I meet back up with my regular GI in 2 weeks. and he said he would call me when he got the report back from the doctor that did the double balloon endoscopy, and until then continue with the steroids. im going to have a lot of questions for him. he pretty much told me that if the endoscopy was negative then it was IBS. but how can they tell if no biopsies were taken?? also does IBS cause adema, swelling and ulcers in your small intestine? If he tells me i dont have it should i think about a second opinion?

 

[Colt]

Yes, get a second opinion. IBS is a real disorder and has a very specific methodology (seratonin insufficiency in the GI nerves and malfunctioning peristalsis). We even have tests to confirm it now (I've never known even one doctor to ever test for IBS) but sadly it has instead become a catch-all for GIs when they're not interested in a patient or something goes over their head. An observation myself and some of the patients I've worked with is that pretty much every GI will ignore you until you have a GI bleed. Then without fail they're suddenly interested and giving you personal care instead of shoving you off on residents and nurse practitioners.

Again, crohn's disease comes and goes in a completely unpredictable fashion. No one test will ever be able to dismiss crohn's disease.

 

[jooles6377]

Hi

I am sorry that your diagnosis has been so stressful as it is stressful enough having the symptoms of the disease. I had a definate diagnosis for Crohns as my Doc who was a colo rectal specialist, had it himself and so was ok with the fact that the biopsies and blood tests didnt confirm it. He said that this can happen.

He them passed me on to a GI Doc and he started saying that I probably have IBS which is causing the majority of my symptoms, but as far as I am aware IBS doesnt cause us to lose lots of weight. This is where I had to try to ignore the constant comments about me actually having IBS as well. Of course I may have but the Crohns is definately there and so the 2 together probably make things worse.

I hope this ramble helps.

Jooles xx

 

[danman]

Sorry for going off topic... Are you Catherine Thomas from the TV here in Ireland?

Although, I think she spells her name with a K.

 

[cathomas]

no i am not although i wish i lived in Ireland!!! I have family there and it is absolutely beautiful!!