Crohn's Disease Forum » General IBD Discussion » Looking for advice on dealing with new doctor

11-13-2018, 10:28 PM   #1
Join Date: Oct 2013
Location: Detroit, Michigan

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Looking for advice on dealing with new doctor

I realize I am having a VERY high class issue here but I appreciate thoughts.

After 5 years of battling Crohn's disease my colonoscopy is showing that I am in remission! After years of hair loss, and 8 hour stretches of vomiting out both ends, bloody stool, arthritis, harsh medications, hair loss, crazy lesions on my shins and ankles, horrible labs -- you all know the struggle. Its rough. And even in this great state I still have lingering random auto-immune related issues like flathead warts on my hands and sore joints. You all know that working towards being healthy can be torturous when you feel like you're yo-yoing back and forth from healthy to flared even though your diet, supplements, medication, sleep, and exercise are all completely on point. I loved my doctor who saw me through the roughest years. She knew how proactive I was about getting well. But now my (first year intern) doctor has sent me a letter in response to my colonoscopy that she thinks I never had Crohns disease because my colon looks healthy.

I am THRILLED that I am looking healthy. Let me not sound ungrateful. Its a complete 180 from my last colonoscopy. But. This young doctor who wasn't here when I was 30 pounds underweight and covered in ulcers and just trying to stay awake through a work day is totally effing with my mind. Its incredibly invalidating of my experience to flippantly say she thinks I never had Crohns. I was sick for YEARS before I was diagnosed and the 3-4 years after my diagnosis were hell. I have been hospitalized many times. If she truly thinks Crohns was the wrong diagnosis that is something to have a serious in person conversation about with an attending.

I have an appointment on Thursday and I'm thinking about what I need to say to her to help her understand that this letter was not ok. Any advice? Am I overreacting?
11-16-2018, 12:22 PM   #2
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Trysha's Avatar
Join Date: Aug 2009

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I think maybe I would over react too after all that suffering.
A first year intern may not be the best person for a final diagnosis and I would be asking to see the Gastroenterologist in charge...but before that
when you see the intern ask her why she thinks this way and let her know how confusing the issue is especially after suffering through all the symptoms tests and diagnosis.
Any intern has to report to the boss...who hopefully is a Gastroenterologist overseeing
your diagnosis and care.
Stay cool..calm ..collected while talking with her.
Finally for your peace of mind make an appointment with the Gastroenterologist.
11-17-2018, 05:04 PM   #3
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Maya142's Avatar
Do you have records from your first scope? For my daughter, they gave us pictures and we were able to request them again from the medical records department.
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
11-18-2018, 12:37 PM   #4
Join Date: Oct 2018
Location: Baltimore, Maryland

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Get a copy of your records and see another doctor. There are a lot of good doctors out there, but there are a few who just can't get past their ego. Not to generalize, but that seems to be a common theme among some of the newer ones especially.
11-21-2018, 09:05 AM   #5
Lisa's Avatar
Join Date: Apr 2010
Location: New York

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I agree with asking WHY the intern thinks the diagnosis is incorrect. I would hope the attending Dr/GI will be at your appointment, if not, and you only see the intern, I would ask to see someone else to go over your case.

Also, hopefully they should be aware that remission is just that - an ABSENCE OF SYMPTOMS - so, if you are in remission, things SHOULD look good!! There should still be microscopic evidence however of past disease progress, as well as yourpast scope/hospital stay/etc.....

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
01-15-2019, 11:57 PM   #6
Join Date: Oct 2013
Location: Detroit, Michigan

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Thank you all! The attending was present at my in-person appointment and set her straight about how people with chronic illnesses always have symptoms - even if they dont report every little thing. The attending actually corrected her regarding my diagnosis being correct before I ever had to say anything.

She did apologize and hopefully will not tell another patient that after years of struggle. Yikes!

Thank you again!

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