Perplexed in attitudes with doctor's testing for crohn's disease

[emptyvoices]

I am also curious in regards to the question about how effective colonoscopies are in testing for Crohn's disease?  I know it's the primary tool in testing for it but what is the percentage that they miss and how far can the scope get into the terminal illieum and small intestine to do biopsies.  I've had abdominal pain with occasional blood in the stool.  The abdominal seems to be more intense in the appendix area though I don't have appedicitis.  I basically started to have vague abdominal pain which grew in intensity every day until one morning I woke up with pain so intense I was convinced I had appendicitis and went to the ER where they did a CT scan and found that my appendix although normal however my terminal illieum had prominent thickening.  This was without contrast.  After that, I developed canker sores in my mouth constantly every week for months.  I used all remedies to rid myself of them and herpes meds until I tested negative for herpes and was put on prednisone which stopped the sores.  For a while that was fine until the wait gain and I developed gastric ulcers, so I quit prednisone over time.  I had a colonoscopy where he looked into part of my terminal illiem and said it was clear...did biopsies and all.  I had a CT scan with contrast later which still showed some thickening.  Probably maybe lessened in thickening in steroids but they told me it still looked inflammed.  I test negative for endometriosis after a laporoscopy.  I'm in so much pain right now and I am only given donnatel extentabs and flexeril (for my back since I have intense back pain).  I asked my GI doctor to have the upper GI series with small bowel follow through and he thought it was a waste of time.  I got my primary doctor to order the test but is my Gi doctor right?  Is it a waste of time?  My ob/gyn thinks that a lot of my pain is in my head but I was so happy and everything was going so well before this happened that I don't understand why I would do that to myself.  I keep having bouts with food poisoning which is wierd...wierd bugs too like Yersinia and I keep being put on Cipro on and off.  Could you please give general advise as too a course of action that would come next?

[Kevin Pho, MD]

You are right that colonoscopy may not reach far enough to visualize the terminal ileum.  Although it is one of the better tests to evaluate for Crohn's disease, it can miss cases in that area.  

A small bowel follow-through is certainly a worthwhile test to evaluate the terminal ileum.  Another consideration would be wireless capsule endoscopy.  This is a relatively newer procedure that can better visualize the terminal ileum compared to the colonoscopy or follow-through studies.

You may want to discuss these options with your personal physician, or consider another GI opinion.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
Medical Weblog:
kevinmd_b

[Biskie2]

I think you should go ahead with the upper GI, follow through to small intestine. Crohn's Disease can affect different areas of the small/large intestine - the terminal ilium is a predominate place, especially with the thickening, indicating inflammation. The canker sores is a sign of an overactive immune system and while Prednisone is one medication to help, it has many horrible side effects. Immuran is a good drug for immunosuppression, so is Pentasa.  If you had bright red blood in stool, chances are the inflammation is lower in the intestine/lower bowel. Get a second opinion from a different GI specialist. It is YOUR body. Good luck.

[kimbacat]

before you go to another gastro, get the SBFT done and take a copy of the films and the report to the new gi.  also, contact the hospital that evaluated your biopsy slides and submit a request for the slides and a copy of the report.  take them to the new doc.  if he has any questions, he can have the slides read by his pathologist.

[emptyvoices]

Don't worry...I have taken the time to gather all my reports, laporscopy pictures and colonoscopy pictures...I don't know about getting the slides.  I'm seeing a doctor through UCSF but after all the stuff I went through, I'm really shocked that my ob/gyn would treat me like pscyhological case and try to put me on antidepressants.  The thing is, if this pain went away tomorrow, I would be thankful and incredibly happy.  Maybe I'm taking just one doctor's opinion too personally but I respected him and he treated me like **** given the opportunity.

[kimbacat]

I'm really biased when it comes to this issue.  I was told for 20 years that it was "all in my head" by many different docs.  all that did was let my disease progress to the point that it was very severe and I was very, very sick for a very long time.

[Biskie2]

RE: the virus and Cipro - if you keep on taking a heavy antibiotic like Cipro, it will wipe out all the good stuff in your digestive system. Please make sure to supplement any antibiotic with acidophilus.

[emptyvoices]

Is that a probiotic like those found in yogurt?  I do eat that even though it is hard on my intestines...well, I try to have it at night.  I don't know, I'm having a flare up right now which has lasted for weeks and hasn't responded to Cipro at all.  In fact, I think Cipro is more of an irritant.  I'm uncertain what to do.  That is why I'm going to a pain clinic today just to get myself out of the pain so I can simply think better.

[Biskie2]

The yogurt is helpful, but for maximum effect, get a supplement like Natren Bifudo, or Jarro Dophilus + FOS, non-dairy - Cipro is so powerful that it will wipe EVERYTHING out of your system (the good bacteria)!  Get with a second GI doc and see what's really going on!

[emptyvoices]

Actually, it will be my third GI doctor....things are fustrating when all doctors basically work out of the same medical group/hospital and they all confer with each other....I don't know.  A part of me when I get an answer to this can't wait to basically take it to the ob/gyn who was no nasty to me and shove it in his face.  Some doctors can be so blatantly hurtful and arrogant which I don't understand.  I just want some relief of the constant pain I'm in.  I just would like to meet people who are in my similar situation where nobody believed them for years until it was found.  I mean, judging by the past where doctors can't fully diagnose by a colonoscopy and I've heard of people being told it is all in their heads, I wonder what the remorse level is when they find out that by not ordering or refusing to order certain tests which caused longer pain and was detrimental to the patient.

[Biskie2]

I would definitely get out of that group and go to a universiy hospital (are they in your health network?) or got to Mayo, Johns Hopkins, Cleveland Clinic, etc. Don't know where you're located in the country, but if you're in the Chicago area, let me know. And get a female GYN, they're more understanding. I know from experience in this matter.

[emptyvoices]

I'm in the San Francisco Bay Area and I do have an appointment with someone that works through UCSF.  Hopefully, that will help.  I sort of feel like I have to keep defending myself and it's a struggle to make myself feel valid in front of some of these very arrogant people.  

Yeah, I'll have to look for another ob/gyn but it's dissapointing.  I actually really liked and respected him.  He's been in my ob/gyn for years.  

Anyway, do you know of anything in regards to UCSF...if it has a good rep?  I don't live out in the country...more like the suburbs off of San Francisco.  If you wish to e-mail me separately from this, my e-mail address is ***@****

[Med_Writer]

UCSF is one of the best medical schools in the country. Unfortunately, this doesn't guarantee a good doctor ro diagnosis. Lord knows I've been through my share of Harvard docs here on the East coast.

While you're waiting for your appointment, and in addition to whatever else you try (probiotics, yogurt, etc.), drink a few cups of tea per day. Use either black, green, or white tea, but for best effect, don't use milk and don't use decaf. Let it steep at least 10 minutes (15 is better).

Tea has well-documented antibacterial properties (even some against yersinia).

-MW

[emptyvoices]

I wonder if the small bowel follow through doesn't detect anything tomorrow, if I should have an upper endoscopy done.  Is that really painful or nothing more severe then having a colonoscopy.  I actually stopped taking the donnatel extentabs when I got on the duralgesic patch the pain clinic gave me because the patch took away a good portion of the pain.  I'm still having pain...I still feel pressure.  But, it's numb or something...it's hard to put into words.  I hear about that tablet that actually the doctor here and my pain clinic doctor recommended after the small bowel follow through whether or not it is negative or positive....is that something that can be done through a local hospital or would I have to go through UCSF?  Sometimes I think with all the medications, I've tried, maybe all I need is to cleanse my system of everything...I don't know.