Negative Colonoscopy/Endoscopy with Positive Biopsy?

[rachsamantha]

Hi all, this is my first post on this thread. My fourteen year old brother just got diagnosed with Crohn's Disease over the summer of 2013. Anyway, I am sixteen and have had symptoms of Crohn's Disease for years. My mom took me to the gastroenterologist when I was around eleven years old. They didn't give me a diagnosis, medication, and they didn't deem further testing necessary. My symptoms have been bad the past few months. Mostly diarrhea, constipation, low immunity, burping, bloating, nausea, stomach pains, extreme fatigue, and painful mouth ulcers. My mom took me to a new GI in February. With my brother's diagnosis and my symptoms, he wanted me to have a colonoscopy and upper endoscopy. My colonoscopy and upper endoscopy was yesterday at the UCLA Ronald Reagan Hospital. When I woke up from the anesthetic, my mom told me that my doctor said everything looked good except one area of slight inflammation. He did take a couple biopsies. So my question is, have any of you had a negative colonoscopy and endoscopy with a positive biopsy? I will not give up if the biopsy comes back negative as well. I know something is wrong. Have any of you had a negative colonoscopy, endoscopy, and biopsy, but got diagnosed with the pill cam? Thank you.

 

[Jmrogers4]

There have been a few children I know of on here that have been diagnosed through biopsies which showed microscopic inflammation but not visible on scopes. Scopes would not show small intestine involvement so a pill cam or MRE wouldn't hurt. Have you had a fecal calprotectin test done? Easy test, just stool sample and it tests for levels of inflammation in intestinal track.
Tagging my little penguin I believe her son was diagnosed through biopsies. Hope you get answers soon and can start feeling better

 

[rachsamantha]

Thank you for your reply, Jacqui. I know I had a stool sample, but i'm not exactly sure what it was for. I hope I get answers soon as well.

 

[SarahBear]

Welcome to the forum! Sorry to hear what you've been going through.

To answer your question… you did not have a negative colonoscopy if there was inflammation. There's obviously something going on, and it sounds like Crohn's or UC. Your biopsies should be more telling, as well. Hopefully they get back to you about them soon and let you know what is going on.

If the biopsies are negative, request a pill cam, absolutely. All my tests were negative except the pill cam and the Prometheus blood test.

:hug: I hope you get a diagnosis soon and get on the way to feeling better.

 

[rachsamantha]

Sarah, thank you for the warm welcome and reply to my question. Hmm, I guess it wasn't negative... My mom made it sound like the doctor told her it was negative. I don't know. I have severe anxiety and my mom thinks I have IBS. I don't think it is that. I hope the biopsies give some more answers. I will definitely request a pill cam if nothing else gives me results. I also have not had a Prometheus blood test. I know my brother had one, and his levels were through the roof.

 

[Brenden]

Hi welcome to the forum, I had a clean colonoscopy, clean barium x-ray however very very bad IBD like symptoms. I too will be getting a pill cam hoping to find some answers. Sounds like you have a good head on your shoulder, don't give up. As if it weren't already hard enough, sometimes you have to fight for your diagnosis! Wishing you all the best and hoping you get a proper diagnosis soon so you can find a treatment that works for you.

 

[rachsamantha]

Brenden, thank you for the warm welcome. I do have a good head on my shoulders, thank you for noticing that! I am going to fight for this diagnosis because I am convinced that is it not IBS. I wish you the very best as well. I hope we both get proper diagnoses soon.

 

[my little penguin]

My son had a "normal" looking scope - we were told food intolerance or Ibs etc after the scope- a week later the biopsies were back .
He had acute and chronic inflammation in his stomach duodendum terminal ileum caecum and near his rectum. They aslo found lots of granulomas - he was then dx with crohn's .

This was his second scope fwiw - first upper scope only was clean ( he had been on pred 7 weeks prior to that scope )

 

[rachsamantha]

My little penguin, thank you for your reply. I hope the biopsies give me some answers!

 

[Chichy]

Hopefully you get to talk to the doctor yourself next time! I personally hate when the doctor talks to mum without me! It's like Chinese whispers and she leaves things out and never tells the full story! Don't be too upset, you know your body better then anyone else! And if they don't give you any idea of what is happening to you, fight for the answer

Xxx

 

[rachsamantha]

Chichy, I hope so too! I have an appt with him soon so I will be able to ask questions. Haha I totally agree with moms leaving things out of stories! I will definitely fight for the answer.