Crohn's in child

Our son is 14 years old.  He's had many tests for Crohn's/Colitis.  We were told by one dr. in the practice it was Crohn's and another "newer doctor to the practice" said it was not definitive.  He had a capsule endoscopy that showed "multiple ulcers in the ileum".  What other reasons/conditions/disease would there be for finding ulcers in the ileum?

His symptoms are mucus/blood in stool, abdominal pain and cramping, anemia, weight loss, failure to thrive, growth failure, vitamin D deficient, calcium deficient, reflux, g-tube fed.  He has other medical conditions as well.

[lizziecee]

Sorry to hear of your son's gastric problems.  As far as I am aware multiple ulcers only occur in the ileum with Crohn's disease. Ulcerative colitis (the other inflammatory bowel disorder) does not affect the small intestine, nor the terminal ileum, only the colon and has decidedly different features in that it affects the whole colon, Crohn's "skips" and is patchy, and UC only goes through the inner level of the intestinal mucosa, whereas Crohn's goes through 3 levels and can cause fistulas from the intestine to other organs.  Crohn's most often starts in the terminal ileum, as it did in mine, some 40 yrs ago.

Additionally, in my experience, the only definitive diagnosis for Crohn's is by a biopsy of the affected tissue, through a regular colonoscopy, and/or regular endoscopy. This tissue can then be looked at by a pathologist who has experience of inflammatory bowel diseases. I regularly have CT and MRI scans, which can show inflammation and/or strictures (narrowing) but I don't think they can provide a definitive diagnosis, only a biopsy can.

Your son's gastric symptoms are highly indicative of Crohn's.  You may wish to ask if his doctor(s) can do a C-Reactive protein (CRP) blood test. If the level is higher than 5, this shows inflammation "somewhere in the body" and then invasive tests can be proceeded with, e.g. colonoscopy and endoscopy/biopsy.  The other non-invasive test I have frequently when having a "flare" is a calprotection stool assay tests. This only requires giving a stool sample.  I believe the norm is 8, so any finding above this, also points towards inflammation in the intestines. Both of these tests are cheap and easy to do.

You don't state whether your son is on any medication to control the disease - once you get a definitive diagnosis I would strongly advocate talking to his doctor about an immuno-suppressant. Gastroenterologists here in the Uk are now using "top down" medications, such as methotrexate (oral or sub-cutaneous injections weekly), and if this doesn't bring the disease into remission, then one of the newer biologic meds such as Remicade or Humira. I am currently on Remicade, having IV infusions every 8 weeks as a day patient in hospital.   Steroid treatment is now only done here short term, to bring a flare under control, and should not be used long term as some of the side effects are pretty serious such as stunted growth in children/adolescents, and bone depletion. Unfortunately I was on prednisone for some 25 years and this has seriously affected my bones, with osteo-arthritis in both hands, hips and feet. There was no other appropriate medication at the time, but science has progressed exponentially in the last 10 yrs or so, and there are better meds to keep one in remission.

I don't know which country you are in, but the US, UK and most of continental Europe have national Crohn's/Colitis organisations and they may be able to help. Here in England our national association has a specific sub-organisation for teenagers/young adults, where they can "talk" to each other on-line and meet up occasionally.

If I can help further, please let me know.

Take care and best wishes for a definitive diagnosis soon.

Liz.