First GI doc visit did not go well.

[mtseeg]

After waiting for more than a month, my first GI doc appointment came and went in less than 12 minutes. I was disappointed.

The doctor is well-known in my area for being one of the "top IBD" doctors. I had burned to CD my abdominal X-Ray, my abdominal MRI and even an abdominal CT-scan I had done 10 years ago for comparison, along with all the interpretive reports. Lastly, I came armed with the ASCA blood test, for which I tested positive.

The doc quickly discounted the ASCA test, stating that a lot of people can test positive, especially those who are genetically inclined to IBD, but don't necessarily have it. Ok, fine. But what about that glowing "focal ileus" of the small bowel showing up in my left-mid abdomen? "I don't read films...I leave that to the radiologists." Sigh. Really?

He only got me up on the exam table long enough to quickly feel around my abdomen and ask if anything hurt. No fecal test. No listening to bowel sounds. Then he said, "If it weren't for your blood test, I'd say at most you have a mild form of Crohn's." But he made it clear he didn't think I had it at all, just by looking at me and feeling around my abdomen for less than a minute.

So, he ordered an upper endoscopy and a colonoscopy. When I asked why order that instead of a pill endoscopy, since my problem is in the mid-abdomen where neither test will reach, he dismissed the idea. And, apparently, Anthem's crappy insurance won't cover the pill camera unless the doc first does at least a colonoscopy.

Is this kind of experience common? Am I asking too much? Are doctors that intuitive that they can just size up a person physically and assume nothing is wrong? What is going on here?

So frustrated.

 

[Guerrero]

Maybe he wants colonoscopy and upper endoscopy instead of the pill camera cause they can take biopsies to evaluate better if this is crohn's or not.

 

[ronroush7]

You might consider a second opinion.

 

[mtseeg]

Maybe he wants colonoscopy and upper endoscopy instead of the pill camera cause they can take biopsies to evaluate better if this is crohn's or not.

I don't understand why they want biopsies or to look in areas where the symptoms don't exist.

 

[Guerrero]

With the colonoscopy they can reach the last part of the terminal ileum.
Anyway it's alway like this i have noticed the GI for check ups want the classic colonoscopy and upper endoscopy first then an mri for the small bowel.

 

[teeny5]

Don't get caught up on the ASCA test result. Mine came out negative and I definitely have Crohns. A colonoscopy is a standard test so I don't find it odd that he wants to do it. Sounds like maybe his bedside manner isn't great, he may still be a great doctor. This disease is frustrating before and after diagnosis for sure! I would give him another chance, maybe ask questions on why he feels a certain way about results. If he isn't the right doctor after that then you need to look for another one. First let him show you his expertise. To be honest if I was a doctor I would want to run my own tests and not rely on others. My GI wanted to do his own colonoscopy "to see things with his own eyes" and never really seemed interested in one done by another dr.
I hope after he does the tests he is more willing to work with you. Good luck and keep us posted!

 

[Jabee]

Most GIs really like to get a "solid tissue diagnosis" which does mean taking biopsies. I have small bowel crohn's confined mostly to my jejunum and ileum, sometimes in my duodenum as well, but my GI still likes to perform colonoscopies and endoscopies. I also get capsule endoscopies, CT scans, and the occasional upper GI with small bowel follow through (which I hate; the barium completely constipates me). The most important thing is to get your GI to address that focal ileus and determine the cause. I'm sorry that I have forgotten why you got the x-ray that showed the ileus.

 

[aypues]

get rid of him. if you have small bowel Crohn's then you need to be doing an MRI Enterography and/or Double Balloon Enteroscopy to confirm, and fecal calprotectin tests in addition to regular CBC and liver panel.

 

[mtseeg]

I'm sorry that I have forgotten why you got the x-ray that showed the ileus.

It was actually after I'd complained about what I had thought was just prostatitis radiating up into my abdomen. I told my PCP that I had been having this on-again, off-again gnawing pain just below the left ribs, but thought maybe at worst it was a stomach ulcer. Crohn's wasn't even on my radar until he ordered the X-ray showing the dilated small bowel loops.

When I asked him whether it could be "just" Celiac disease, since that runs in my family, he said, "Celiac wouldn't cause structural changes in your bowel like that."

 

[produff26]

I was diagnosed in 1987 and I've gone through several "experts" over the years.

Been with my current GI for almost 20 years. I can call or text him at any time and he responds. He's on top of current trends in treatment and listens carefully to what I tell him. He's as much a friend as doctor and thats what you need in the darkest of moments.

 

[shamrock15]

Keep in mind that crohn's can move as well. There are always good reasons for the scopes. As for reading the x-rays, even as obvious as that one is, there may be other information contained in it that he is not suitably trained to spot that has a significant bearing on your case.

As a note though, I too have had a bad experience with a so-called "crohn's expert" (both endoscope and colonoscope done early on for baseline) and moved on to another GI in a couple years. I have done much better with the new doctor. I moved on because he steadfastly refused to do anything other than tinker with remicade dosages for me despite the fact that it wasn't completely resolving my issues. I brought reasonable evidence for him of microbial issues which he outright dismissed and likely have given me considerable issues for a long time. He wouldn't schedule regular blood work despite my long running anemia and remicade.

Give your guy a bit of time. He should be able to give some reasonable answers for his treatment decisions.

 

[mtseeg]

What I'm particularly concerned about is the fact that this "expert" doesn't perform his own endoscopies or colonoscopies. He farms that out in-house to a couple other doctors in the practice. So he doesn't read films, he doesn't do his own procedures...I wanted to ask him, "So, what exactly would you say you do here?"

 

[Trysha]

Consider changing to another GI specialist
It does not bode well if there is no patient - doctor relationship.
Already you do not appear to trust him
Feel better soon

 

[aypues]

What I'm particularly concerned about is the fact that this "expert" doesn't perform his own endoscopies or colonoscopies. He farms that out in-house to a couple other doctors in the practice. So he doesn't read films, he doesn't do his own procedures...I wanted to ask him, "So, what exactly would you say you do here?"

not reading radiology images (MRI, Xrays) is standard for a GI doctor - they use the written report. GI's are not trained Radiologists. It is unusual that he wouldn't do a colonoscopy or upper endoscopy though - those are like GI 101. Moving onto a double balloon procedure is rare, and not many do that.