Trouble Getting a Diagnosis - Written Off by Doctors

Mickeymyhero

New Member

Joined : Nov 2012

Posts : 2

Posted 11/14/2012 10:34 PM (GMT 0)

I am writing on behalf of a friend of mine who is having major difficulty getting a diagnosis. She has had symptoms for over a year - intense pain, frequent BM's, dropped weight, the works. Having Crohn's disease myself, it was very easy for me to identify her symptoms and recognize the huge possibility of Crohn's. After visiting a slew of doctors and having multiple MRIs, scopes, and x-rays, she has been written off as having either IBS or an eating disorder - neither of which are acceptable answers. Please let me clarify - I know this girl very well. She is extremely open about all her struggles, and IF that included an eating disorder, she would share. Out of all the possibilities, an eating disorder is not one of them. Today, she is seeing an eating disorder psychiatrist with the hope that the doctor will write up a report and provide "proof" for the GP and GI that she indeed does not have an eating disorder. She is insulted, offended, and hurt that these doctors have dismissed her case and washed their hands of her. She will soon begin her 4th round of whole new set of doctors, all within a year and a half.

She is in considerable pain and at the end of her rope. My doctors were very swift in my diagnosis as I had a textbook case, so I unfortunately don't have much to offer her in terms of support and advice. Have any of you had similar experiences, and if so, what do you recommend she do?

Ides

Forum Moderator

Joined : Nov 2003

Posts : 7204

Posted 11/15/2012 12:48 AM (GMT 0)

Welcome to Healing Well! I am sorry your friend has become so ill. First off, has she had a capsule endoscopy to examine her small bowel for inflammation, ulcerations, or other signs of problems? You didn't mention that in the list of tests she has had so I am curious.

I had all the tests, scopes, etc. to be told by my GI that he wasn't sure what was wrong with me. I gathered every test report, scope picture, etc. I searched my area for a GI that specialized in Crohn's. I found one that is nationally recognized and that practices here in the far left corner of the US. I made an appointment which I had to pay for myself. By the end of the 90 history and exam, I walked out with a diagnosis and a new GI!

The key is finding someone that specializes in CD. If she has already seen someone that does, then it is more of a problem.

Another thing that comes to me mind is test "variables." My capsule endoscopy was worthless. The transit time from mouth to out was just under 6 hours. My GI said that made the test inconclusive because not enough images could be gathered as the capsule sped through my small bowel. Also, the path reports from my two colonoscopies both noted crypt changes, scarring, etc. The impression of the pathologist on both reports was "highly suggestive of Crohn's disease." However, my original GI said since no granulation was seen, it wasn't CD. After delving into this disease, I learned that a certain percentage of those with CD do not have granulation found microscopically. I was convinced I had CD and sought out the help of a specialist just for that reason. As I wrote previously, there was enough evidence in my prior tests for the specialist to diagnose me quickly.

Please let us know how we can help. I'm sure others will have additional ideas to pass along.
Ides

gumby44

Veteran Member

Joined : Nov 2007

Posts : 4505

Posted 11/15/2012 2:22 AM (GMT 0)

So sorry about your friend...it is so frustrating. IBS can be quite debilitating, so it is possible that she doesn't have Crohn's but I think she needs a doc who believes that she is suffering and who will continue to search for answers.

Before I was diagnosed with Crohn's, I went into the hospital with severe anemia. At that time I had absolutely no GI symptoms. They did a colonoscopy, upper endoscopy and barium swallow test and everything came out negative. They gave me an iron infusion and send me home. about 6 months later I became anemic again, and I had the pill cam that detected a bleeding ulcer in my small intestine. A repeat colonoscopy with biopsy confirmed the Crohn's. I remember being so frustrated that they had no explanation for a hemoglobin of 7, but at the time, I wasn't even thinking of Crohn's...I was worried I had cancer. I hope your friend gets some answers soon.

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