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Avatar universal

Where from here?

I have a 36 yr. old handicapped son.  Four years ago, he had a ruptured appendix.  Was in the hospital for 5 wks.  - finally got better - took about a year to gain his weight back.    A year ago he was diagnosed with GERD.   He's been on Nexium and recently, 3-4 months Kapidex.  For a while, he didn't complain about pain.  Three weeks ago he started to complain again, but now the pain is a little lower.  He has had a CT scan which showed subtle thickening of the terminal ilium (Crohns Disease?) and, today, an xray with contrast of his stomach and small intestines and was told that they appeared normal.   I don't know what to do now.  His doctor seems very unwilling to do any further tests, yet my son is still contantly complaining about pain.     The xray tech suggested another colonoscopy taking a sample of his small intestine.   Anyone with any suggestions would be greatly appreciated.   Thank you.
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Avatar universal
With a handicapped son (36 yrs) I've had to learn what tenacity it.  When his first doctor kept implying it was "in his head" and not really wanting to do anymore than "go home and keep taking his Kapidex", I really had no other option.  

When his current doctor told me what it is, I  hugged him.  He seemed amazed and confused and said "I didn't really do anything" - I said "you kept pursuing and didn't give up" and that's what it took to figure this out.  With communication problems, it was especially difficult.  Again, thanks for everything and I will watch his fat intake.   Have a Wonderful Holiday Season - I know ours will be now.  (No need to respond - I'm sure you're busy.)
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Avatar universal
Crabcake, I'm so glad that you've found the problem! And I'm so glad that you had the tenacity to push through. These days it really seems that when someone is dealing with the medical profession they add an extra 'helping' of gumption.

I hope things go very, very well for your son. Please keep in mind that many individuals can have some trouble processing fats after GB surgery, so it's often wise to stay with a low-fat diet for a number of months afterwards.
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Avatar universal
Well, it's been almost ten weeks since my first post regarding my son and his constant abdominal pain.  In that time, we changed doctors and the new doctor prescribed a colonoscopy with biospy, HIDA  Scan,  endoscopy, abdominal ultrasound and today an endoscopy with ultrasound.  We've been busy!  As a result of today's procedure we finally have an answer - gallstones and inflamed gallbladder.  I've already made an appointment to see a surgeon this week and, hopefully, have his gallbladder removed next week.  Just can't imagine why none of the previous tests showed this problem, he's had this pain for 1-1/2 yrs. -but just so happy that we finally have an answer.  Just wanted to thank you so much for all your suggestions.  You gave me so much information and motivated me to change his doctor (not that you suggested that) and pursue other avenues - and I'm so glad I did.   Thank you so very, very much for all your help.
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Avatar universal
Crabcake, get the written report from that colonoscopy. In some cases there are notations in those notes that patients never see because they're never relayed. When people go back and see the reports months-to-years later they can be shocked at what is contained in those reports.

And check on that hernia - not everyone has one.
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Avatar universal
No, just a regular colonoscopy.  I do remember the GI doctor saying his colonoscopy looked okay, but he did see a hernia which he said was minor "everyone probably has one" - nothing to worry about.  I'm still wondering about that.  They did an endoscopy (at my request) at the same time which showed the GERD.  (My son just walked in the room and told his Dad his stomach hurts - it's driving me CRAZY !!!)  Will ask for these tests - wish me luck.  Thanks so much.
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Avatar universal
Make sure if they do the blood tests for celiac they do the full panel, not just the transglutaminase. They need to do total IgA, IgA & IgG gliadin, transglutaminase and endomysial levels.

They can add the IBD test to that, but it's specialized and they'd need the kit to do it. Make sure your insurance will cover it - not all insurance companies do.

Did they do biopsies of the terminal ileum last October?
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Avatar universal
Our family primary care doctor is also looking into the possibility of Celiac Disease and has ordered blood tests to check for that.  Can they add the IBD test to that?  Also, I don't think his GI doctor will go for another colonoscopy (had one last October) as I've had to fight for every test (and medication) for my son.   Thank you for your input.
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Avatar universal
I think a colonoscopy with biopsy of the terminal ileum is in order. In addition, pair it with a test looking for markers of IBDs such as the Serology 7 by Prometheus Labs.
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