04-09-2016, 05:53 PM   #1
Join Date: Apr 2016
Location: Chandler, Arizona
Lymph nodes and

Lymph nodes & multiple umbilicated nodules
Hello, I am new here.

My son just turned seventeen last month. He has been in a major flare up since January 1st this year. Since then he has been put on Lialda, he worsened on it so we stopped it and started 6MP he got even worse so we ADDED Remicade.

He was on both Remicade and 6MP (as well as metronidazole and Steroids) for a couple of months, we finally took him off the 6MP two weeks before his last Remicade infusion this last Thursday.

He has been getting progressively worse (increased rectal bleeding, both bright red and black stool, severe pain, nausea and vomiting) his GI Dr. ordered an emergency colonoscopy that was done on Wednesday, April 6th.

He told me after the colonoscopy that he found "friablity with contact bleeding in the entire examined colon". He said he was concerned with the new finding of "multiple enlarged lymph nodes and multiple umbilicated nodules throughout the entire examined colon" as well as a "redundant colon" (Redundant colon has never been mentioned before and he has had more scopes than I can remember). He also found a new area of Erythematous duodenopathy. He went ahead with Remicade infusion the following morning.

All of these things are new, the colonoscopy before this (Mid January of this year) showed problems different than these.

I am freaking out having to wait for biopsies. Has anyone here dealt with the disease getting worse despite aggressive treatment? I heard "lymph nodes and nodules" and my mind went straight to cancer. The GI Dr. looked concerned and that certainly did not help.

Has anyone here had their child develop enlarged lymph nodes and umbilicated nodules?

He has been in severe pain since the colonoscopy especially while walking as well as having to use the bathroom extremely frequently. I am thinking of driving him to the ER but not sure what they would do for him.

Any help, advice, experiences would be greatly appreciated.

Thank You,
-scared mom
04-09-2016, 10:28 PM   #2
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04-09-2016, 10:31 PM   #3
Miss Underestimated
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Miss Underestimated's Avatar
Join Date: Mar 2011
Location: Norfolk, Virginia
How awful! I'm sure you are both frightened at this turn of events. Can you call your doctor and perhaps get your son something for the pain while you wait for the biopsy results?

Try to have faith that your doctor will know what to do whatever the results are. I know it probably has you in knots.
*Sick since 1987; managed on my own;
*diagnosed 2008 when I underwent emergency surgery;
*various meds and tests 2008-2012,
*Jan 2012-present, Humira. No symptoms, but scopes indicated disease.
*6MP for all of 2013.
*2014 &2015 complete mucosal healing.

**Staying on Humira for maintenance**

The statistics I see so far for my situation seem pretty good. There ARE long term statistics for the Anti-TNF drug treatments now. I'm here to make them longER.

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