Is it Crohn's?

[jlt65]

I am a 39 year old female. I have been having "episodes" of severe pain in mid left flank area (front/radiates to back) for over 4 years, with bowel symptoms common to IBD/IBS (alternating loose bowels and constipation, vomiting, severe nausea, low grade fevers, joint pain, etc.).  Because of the location of the pain, it was originally thought that I was suffering from kidney stones.  The kidney, gallbladder, pancreas, and liver have been ruled out as the cause.  About 2 1/2 years ago I was evaluated by an obgyn.  A scope was performed and adhesions were discovered attached to my bowel.  Please note that I had a hysterecomy about 11 years ago.  I still have 1 ovary (left side). The ovary was fine and left intact. In the beginning, the episodes would last a few weeks.  But over the last 2 years, the episodes have increased in duration, with the last episode lasting almost 5 months.  The severity of the pain and other symptoms eventually caused me to go to the ER. On the second visit to the ER, the ER doctor (chief of department w/extended training in radiology) felt I may have Crohn's and he identified an abnormalty on exrays that were taken over a weeks period of time (consistant air pocket in same location on all exrays).  This doctor had me admitted and I was in the hospital for 5 days (no food for the first 3 days, then placed on a liquid diet).  There were many tests performed (ct scans and small bowel follow-thru, etc.) and there was no clear diagnosis made.  During the small bowel follow-thru, about 1/2 + way thru the test there was a brief ballooning/back-up of barium. The radiologist shrugged it off because it resolved quickly. I was discharged without an answer and referred to the gastro specialist. The specialist ordered the IBD First Step test.  The initial step of the test identified markers, the 2nd test did not confirm the markers but indicated a 68% prevelance for IBD (please note that this test was performed after being placed on antibotics for possible h-pylori - which it turned out that I did not have per the specialist).  The specialist performed upper and lower scopes and did not identify crohn's but did say I had acid reflux disease (please note that I have never had symptoms of heartburn, etc.). Because I was vomiting 3 to 4 times a week during this episode, I asked if this could have caused the inflammation identified.  I did not receive an answer.  
I eventually gave up on the doctors and started taking herbal antioxidents, etc. (in addition to pain medications)and eventually the symptoms subsided around April of this year.  I have had episodes (short in duration) but nothing that has prompted me to return to the doctor.  About a month ago the severe pain started again and is becoming unrelenting, again.  The bowel movements are becoming abnormal (loose/watery) and the nausea is increasing in severity.  I am at a lost. Any input or idea's on where I go from here would be greatly appreciated.  Thank you.

[jlt65]

Hi, Thank you so much for your response.  This is the best insight I have received so far.  I was tossing around the idea of having the capsule endoscopy (which my GI is open too), but after the multitude of invasive tests I had to endure with the last flare-up, I was not jumping at the opportunity.  I will also check into getting a referral to a Rheumatologist.  I have been reading many many horror stories about the length of time it can take to get a correct diagnosis.  Unless your colon is affected, it seems that a lot of people are not officially diagnosed until the need for surgery arises.  Thanks again for taking your time to respond.  I wish you the best of luck with your ongoing treatment.  Julie

[JeffFL]

I am not a Doctor, but I certainly can relate to your symptoms, and I hope I can be of some help to you.  I am a 41 year old male who has been battling bowel problems in addition to joint problems.  I first consulted a rheumatologist who diagnosed me with an arthritic condition called Spondyloarthropathy.  A big word for hip pain and my spine feels like it's on fire!  I never associated my stomach problems with this condition, but it did seem every time my joints would flare, my bowels would go out of control.  The pain often would land me in the ER where I would usually get a CT scan because the ER Doctors thought I was either passing a kidney stone or having acute appendicitis.  My doctors suspicioned that I had Crohn's and tested me for it.  I had the IBD first step, but that came out negative.  I then had a colonoscopy and barium enema and swallow.  Nothing showed.  When I had my EGD, however, it turned out there was some chronic inflammation present.  My Gastroenterologist wasn't convinced it was Crohn's, because he said that reflux and certain medicines can cause some inflammation.
I was referred to the University of Florida Medical Center for evaluation.  It was the Rheumatology Department that leveled with me and said despite the negative findings, they were confident what was causing the problem was Crohn's Disease.  I followed up with my Gastroenterologist and he did a capsule endoscopy and found about three small inflammation patches in my small intestine.  He really wasn't confident to label it "Crohn's" because it didn't quite fit the diagnostic critereon, but because my rheumatologists were adament about the diagnosis he agreed to try Pentasa.  It's working!  For about 3 years this is the first time I can say I can feel this condition is starting to stabalize.  I now take Methotrexate, Enbrel, and Pentasa.  My rheumatologist is about ready to switch me from Enbrel to Remicaide, because it is supposedly more effective for Crohn's.
My advice to you is to consult not only with a Gastroenterologist, but a Rheumatologist, as well.  Also, push for the Capsule Endoscopy.  It is non-invasive, painless, and quite sensitive at detecting early Crohn's.
Hope this helps.
Good Luck,
Jeff

[jlt65]

In light of the detail provided for the doctor's consideration, I am disappointed in the response.  For example, there was a brief abnormalty with the small bowel follow-through that was ignored by the radiologist - was the readiologist's reaction appropriate?  Any input on the results of the IBD first step - is this test always accurate and what does 68% prevalance for IBD represent?  Given the fact that I run low-grade fevers and the pain is persistent - wouldn't that rule out IBS?  Any input with respect to the adhesions - can adhesions be secondary to Crohn's due to inflammation?  A diagnosis was not anticipated, but a detailed response was.

[Kevin Pho, MD]

Crohn's can be difficult to diagnoses, especially if it is present in the small bowel.  The upper and lower endoscopies do not visualize the small bowel well.  The upper GI series with small-bowel follow-through is normally required to see this - and you reported this to be negative.  

Another option would be to consider capsule endoscopy to visualize the small bowel to ensure Crohn's isn't present.

Otherwise, you have had a pretty thorough GI evaluation - many of the major diseases would have been found with the tests you have received.  

Irritable bowel disease certainly remains a possibility, and treatment with increasing fiber as well as possible antispasmodic agents can be considered.  

Regarding the nausea, more uncommon diseases such as gastroparesis can be evaluated with a gastric emptying scan.

These options can be discussed with your gastroenterology specialist.  

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