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Can this be Crohn's

Hi everyone

Would really appreciate a reply

My 14 year old daughter is going through severe abdomen pain (constant) for past 4 months. Initially she was constipated and past 45 days severe diarrhea (Almost 25 times a day). She has other symptoms like blood in stool (which they blame on hemerhoids), sever nausea, vomitting, jint pains, fatigue, irregular periods, muscle wakness, anaemic, low Vitamin-d, Feccal calprotecting of 100.1. Mouth ulcers, loss of apptetite

All these point to Crohn's, but GI is unable to diagnose. They found Chronic Focal Itelitis in Colonoscopy, but think it's NSAID damage (Ibuprefen) that caused it and not IBD.

Her promtheus IBD panel came back double positive (ASCA Igg and ASCA Iga). But Children's hospital does not think it is a good test. She had Upper endoscopy, colonoscopy, MRE to look at small bowel and also capsule, except her symptoms and Chronic Ileitis, they have not found much.

We are planning to take her to Mayo, but she is not functionally doing well to take a 2 hour flight and is on NG Tube and wheelchair

Has anyone gone through similar symptoms and eventually diagnosed with IBD or other conditions ? Any suggestions are welcome.

Also, if she takes oral feeds , it starts paining 15 to 20 minutes later heavily. She has a constant pain of 6 or 7, and some mini flares once in a while that gets it up to 8 or 9 pain

Thanks and appreciate any insight. Current GI doctors have diagnosed her with Visceral Hypersensitivity, which we are not agreeing

  1. Hi , thank you so much for reaching out and I'm so sorry to hear how your daughter is doing and the pain that she is experiencing. I hope some other community members will chime in here because I know that your story is (unfortunately) not uncommon. Many people have gone undiagnosed for quite a while because unfortunately, some doctors just are not educated enough on what Crohn's or colitis are. I would strongly urge you to consider seeking a second opinion, from another GI or an IBD Specialist. Also, did your daughter have bloodwork done? Or, a pill cam test? A colonoscopy only shows the large intestine and it could be possible that she may have issues in her small intestine. It could be something to inquire with your doctor about. Please keep us updated on how she's doing. And, don't stop fighting for answers!! We're all here for you and thinking of you both! - Pam (team member)

    1. unfortunately many doctors just don't care when it comes to ibd because often the patient doesn't look visibly sick. When I was diagnosed it took my mum to ask if it could be Crohn's as a few of my relatives had it. I had lost over half my body weight and needed blood transfusions. Eating hurt for me and my lower bowel was visibly swollen. There are hundreds of symptoms but many of them are the results of malnutrition caused by the illness.

      1. i gotta agree with this it seems like doctors are nervouse to diagnose for some reason idk why

    2. Thanks for the answer, there was a similar situation, I read a cool article maybe you will also be interested in reading

      1. All I can say is, if you don't have a gastroenterologist or internal medicine specialist, find one. It seems that most doctors these days would rather experiment with patients instead of finding the root of the problem. We need a Dr. House in every hospital!

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