So many repeat tests for Dx--necessary?

[TessaGold]

Hi, I have a long on-again, off-again history with Crohn's. I've had elevated white blood cell counts at least since I was 18 (I'm 33 now), but possibly as a kid, too. Starting about 6 years ago, I have also had elevated C-reactive protein and sed rate tests whenever they checked, and sometimes positive rheumatoid factor as well. I've been plagued with abdominal pain, diarrhea, GERD, and choking problems for as long as I can remember, and steadily worsening. In 2007, after a colonoscopy and endoscopy showed nothing except some irritation, a GI doc did a capsule endoscopy and found Crohn's in my duodenum and jejunum. I was treated for a year with--I think these were the meds--Pentasa and Entocort. I felt SO MUCH better. Not just GI-wise, but my chronic pain and fatigue got better too.

Then I moved to the Midwest in 2008, and the Crohn's diagnosis and treatment were taken away because I had gained a lot of weight. That was literally the reason. The fact that I had thyroid problems and was on a weight-increasing medication didn't matter; the doc said Crohn's patients are never "obese." I gave up on doctors for years.

I moved to a new state again last year, and recently decided to get to the bottom of this, after losing 20 lbs in 6 weeks bc of GI troubles. Rheum did a whole workup and concluded there's something autoimmune, but not systemic. He suspected Crohn's and sent me back to GI. Elevated WBC count, sed rate, CRP, and signs of iron-deficiency anemia. All the usual. Also 67 fecal calprotectin (which the doc said is slightly elevated and suggestive of Crohn's--I see that people on here have much higher numbers, but I"m not symptomatic right now). Prometheus labs came back today, and I haven't seen the results, but the doc told me they are positive for Crohn's. I had an abdominal CT today and it was totally normal.

Given all of this, GI wants to now put me through an upper endoscopy, colonoscopy, and capsule endoscopy again. I've had scopes numerous times, I find them very taxing because the fasting and laxative stuff turns into a severe migraine every time, and I really don't know why I need to have all of this again just for a Dx. Am I missing something? He has the results of the previous scopes and camera pill. And all the bloodwork. I will get it done if it means getting a proper diagnosis and treatment, but I don't always trust doctors and I'm nervous he's just padding his pockets with unnecessary tests, dangling treatment over my head. I'd love some advice. Thank you.

 

[Georgie98]

The doctors usually diagnose you when at least 2 tests say the same thing and for me this was a nightmare! No tests are unnecessary, they're all done to find the right diagnosis for you! You Just have to be patient and persevere it's hard but you'll get through it, I'm new here and already had a lot of support I didn't expect, so just keep us all updated on how things go.
Hope I helped you a little

 

[valleysangel92]

Hello there

I'm sorry I've only just seen this.

I would say that the tests are necessary unfortunately. The scopes you had were a long time ago and Crohn's is an illness that can change in a matter of weeks. It's really important that your current doctors can get an idea of whats happening now. Your Crohn's may have moved, spread, caused narrowings or caused fistulas and all of these things can affect which type of treatment is going to work. In order to effectively treat Crohn's it is vital to have as full a picture as possible.

Even once a diagnosis has been established, it is important to have repeat tests to monitor the progression of the condition and to ensure that the treatment being given is working well.

 

[UnXmas]

I think there does come a point where tests are unnecessary. Doctors are often the ones to make that decision, but as a patient you do have a choice. Tests should provide useful information that can be used to diagnose and/or treat you, and if the stress (and, for you also financial cost?) outweighs the usefulness, then it does make sense to stop - searching for a diagnosis can be exhausting when it drags on.

In your particular case, though, it might be best to seek the opinion of a doctor who you do trust on this issue, and see if she/he agrees with your current doctor. If that's not possible, I would be open about your concerns with the doctor who's requested the scopes - not the padding his pockets part, obviously - just say you're exhausted by tests and are not sure you're getting anywhere. See what reasons he has for wanting the tests done. You could also ask if there are less invasive tests available to have to start with, or if there are ways to manage your symptoms without a specific diagnosis.

If you really need a break from tests, you can take one and go back for more tests when you're ready (or if symptoms change). How recently did you last have scopes done? Also have you at any point had biopsies showing Crohn's?

 

[TessaGold]

Sorry to take so long to reply, and thank you for your responses. I heard from my doctor, and he took the time to explain everything to me in detail. I really appreciated that and I trust him now. He said that he needs "mucosal evidence" before starting me on a "lifetime treatment regimen."

He does believe it's Crohn's based on the blood tests and fecal test and previous capsule endoscopy, but I'm getting an upper endoscopy, colonoscopy, and capsule endoscopy on Friday. He plans to do a lot of biopsies of the duodenum especially. He said that the colonoscopy is not strictly necessary now, but since I have to do bowel prep for the camera pill and the colonoscopy might be warranted later, it makes sense to do them both in the same day, along with the upper endoscopy.

To answer your questions UnXmas, my last scope was a colonoscopy in 2008, and the biopsies showed nothing, but since the Crohn's was found by capsule endoscopy in my duodenum, my new GI doc says it makes sense that the biopsies of the colon would be negative. He says I'll need scopes every year (or two?I forget) starting 10 years after the Crohn's started. I don't know how you define when it started, since I've been having these GI issues since childhood, and I was first officially diagnosed with Crohn's in 2007. But that sucks. Scopes suck!

I am trying to get this all resolved ASAP because I need a hysterectomy and the gynecologist needs the all-clear from the gastroenterologist first, so it will probably be Friday--wish me luck! And thanks for your advice, everyone.

-Tessa