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Desperate Mom looking for a diagnosis

Good Morning All,
I am hoping someone can help us. My son is 20 yrs old, has had severe diarrhea, nausea, vomiting and abdominal pain for almost 4 years. He has had every GI test I believe is out there to diagnos him. Every Doctor we visit including a wonderful Nurse Practioner he sees at John's Hopkins suspects he has Crohns, but a biopsy he had in April during a single balloon enteroscopy did not show Crohns. Since December 2010, by son has been hospitalized 6 times for severe abdominal pain which is not relieved with high doses of morphine or dilaudid. His painful episodes last anywhere from 24 hours to 4 days and he always has to go to the ER for them. When I look up Crohns I think I can put a check mark next to every symptom except eyes and weight loss, although he was on Lexapro and just come off about 3 weeks ago and the weight is already dropping. His last hospitalization was at Vanderbilt in Nashville while he was driving back to school at Univ of Alabama last week. He was filling up a toilet bowl full of blood about 15 times in 4 days. The Docs there admitted him to ICU as his hematocrit was dropping quickly and after testing said it could be a fissure. He has had fissures before, but never bled like this. They could not do a colonoscopy because he kept throwing up the contrast, but did do an upper and said it looked fine. Here are the test he has had done in the last 4 years and some recent surgeries:

Colonoscopies x 4 = Always find inflammation and narrowing of the sigmoid colon
Upper endoscopy x 2= gastritis
Capsule endoscopy 2010-showed delayed progession and inflammation in the SB
CT Scans x 3 = Narrowing sigmoid colon
Barrium swallow- Normal
Single Balloon Enteroscopy- 04/11- thickening of Small Bowel Wall
HIDA Scan 01/11- positive for Sphincter of Oddi due to GB removal

12/10- Gallbladder/Appendix removed due to pancreatitis and cholecystitis
06/11- Sphincterotomy- Bile duct had to much pressure and was enlarged

This poor kid is trying to go to college has not been able to complete a full term due to all of this and we still don't have a correct diagnosis. He is getting depressed, afraid and always waiting for the next flare up of severe abdominal pain. I am wondering if a trip to the Mayo Clinic may be in order? If anyone has any thoughts, I would greatly appreciate them.

Thank you so much!


Super Moderator
Hi Amy and :welcome:

Oh my, this is so sad to read, you must be absolutely beside yourself! Everyone has various combinations of symptoms so not everyone has weight loss or eyes problems as a part of their set.

It certainly sounds like a case of Crohns Colitis. What are they saying is causing the inflammation, thickening and narrowing, not to mention all his other symptoms?
Is everything hinging on the biopsy result? My son's biopsies have not returned a positive result for Crohns either but the GI's and colorectal surgeons all say, regardless of that it is Crohns, and I agree.

Has your son ever had any sort of medication to treat his symptoms?

My daughter went undiagnosed for 18 months and that was bad enough, but 4 years! She also had severe abdominal pain and vomiting and at one point was diagnosed with Pancreatitis and a renal problem but they were red herrings.

I don't know your hospitals there but I would say, yes go! I'm sure others will chime in that are familiar with your area.

My heart goes out to you and your son hun. I hope you can get some solid answers soon and your son some much needed relief. Please browse the forums and any questions don't hestitate to ask! We have an Undiagnosed Club and Parents forum you may like to look at as well.

Good luck and welcome aboard!

Take care, :hug:
Dusty. xxx


Naples, Florida
Hi Amy and welcome. I'm so sorry that your son is going through this :( Have they not tried giving your son any medication to treat the inflammation they saw? I think I might take the results you've already been given and head to another GI for another opinion.

I wish you all the best!


Your Story Forum Monitor
Welcome Amy! I can't beleive they haven't given your son a diagnosis. Just like Dusty, I am curious if they gave you any other explanation for his inflammation and symptoms? I mean, it sure sounds like IBD to me. And many of us (including myself) have negative biopsies.

Have they tried your son on anything other than morphine or dilaudid? Predisone? I sure hope you get answers soon so your son can start appropriate treatment and feel better. Keep fighting for him!
Welcome. I am so sorry for your son. We have been in a similar boat for 2.5 years now. Do you know if the doctors are relying upon granulomas on the biopsy to dx Crohn's? I would think the inflammation and symptoms alone could be enough. Like others, I am curious if prednisone or other biologics have been tried. Prednisone made my son much worse. Did your son ever have the serum test IBD 7 from Prometheus?
Good luck!


To save time...Ask Dusty!
Welcome Amy!! It sure sounds like chrons! I hope you soon get solid answers for him so he can get treated and get on with his life! Good luck!!


Welcome! I am so sorry you guys are going through this. :( I have been undiagnosed for technically 6 years, but I didn't start pursuing it until 13 months ago when it was bad enough to go to an ER. Honestly I am shocked that he is undiagnosed over a biopsy, when there are so many other tests that show inflammation and problems.

I know how hard it is to try and do college and try and deal with this undiagnosed...it can get really hard! I dropped out a year ago after one hard week left me in the hospital, and I had also lost 12 pounds that week, which really scared me. I'm going back this semester so that I can graduate, and it will be hard, but time management will be key!

I agree with the others, I would bug his GI until something is done. A trial of pred would show it is IBD if he responds to it. He shouldn't be left hanging!

Major hugs to you and your son!
Welcome Amy to the forum i am still unDiagnose club to i have been having diarrhea,throwing up,unbearable stomach pain,weight loss i have had a lower scope done in june this year and the doctor said its just IBS and i had a upper scope done yeturday the doctor took 3 or 4 biopsys just waiting on them to come back my GI doctor thinks its crohn's and thinks i have had it since i was a little kid