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My son's biopsy results

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Crohn's Disease
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Posted 1/21/2017 2:03 AM (GMT 0)
I don't know what to think. I'm more frustrated then I was before. So he says there was active inflammation. A biopsy taken in the terminal ileum (where all of his pain is at) showed a lot of "immune cells" in the area. No granulomas, ulcers, or other damage. So he refuses to believe it's early Crohn's or UC.

He says he's taking a shot in the dark and wants to treat him for bacterial overgrowth. So he put him on an antibiotic. If that doesn't help, he says it's probably just IBS. You guys know how I feel about that. And it's not like I WANT my kid to have Crohn's. I'd give my right arm for him to not have it. I just don't want him to go through what I did. Years of suffering and waiting until it was bad enough for them to finally confirm that it was.

He agreed with me that it COULD turn in to Crohn's, but as of today it's not. Just frustrates me when I fought so hard for help for so many years, and it took me almost bleeding to death before they'd listen to me. Another 5 years before I found a good enough GI doctor to really help me. Feels like I'm reliving this nightmare all over again. Inflammation scattered, immune cells gathering up in his TI, diarrhea 10+ times a day. I don't know, seems like red flags to me.
Posted 1/21/2017 2:27 AM (GMT 0)
Jennifer,

I am going to be blunt here. Find another doctor for a second opinion as soon as possible. Our kids deserve better than a "maybe". If your son was diagnosed with UC or Crohns you would run to another doctor to ensure a correct diagnosis. This should still hold true. I would get copies of everything including any visuals such as scopes or mri's and take them in.

Clo
Posted 1/21/2017 2:37 AM (GMT 0)
Jen,

I'm really sorry that you haven't received a definitive diagnosis. I think right now though, your strong anticipation for the test results has left you with a big disappointment. I'm not implying that you're overreacting, please don't take it that way, but I think you need to take a few days and take a step back.

Then you can think of the positives. As of right now, your son doesn't have Crohn's. That's good news. I would give the antibiotic at least a chance for now. Try a low residue diet for a couple of weeks or even a few days of brat.

I'm sure you'll have a renewed outlook after that. If things haven't shown any improvement, then I think you really need to push for another opinion.

I know you don't want your son to go through what you went through. That's a very natural fear to have. The fact is, even with a genetic link, there isn't a high percentage chance that he would go through exactly what you went through.

I hope things improve soon. Keep us posted. I have a strange feeling that things are going to get better for him.
Posted 1/21/2017 3:55 AM (GMT 0)
I was under the impression that IBS does NOT cause any inflammation. When I google that, most medical articles tend to agree. So I think that you really need to find a new GI who actually knows what they're talking about. I am SO SICK of morons.

https://healthychildren.org/English/health-issues/conditions/abdominal/Pages/Irritable-Bowel-Syndrome-IBS-and-Inflammatory-Bowel-Disease-IBD.aspx

http://www.healthline.com/health/crohns-disease/ibs-vs-ibd#Overview1

http://www.ccfa.org/assets/pdfs/ibd-and-irritable-bowel.pdf
Posted 1/21/2017 4:07 AM (GMT 0)
Wow, I am now so extremely pissed off at this doctor.
Posted 1/21/2017 5:11 AM (GMT 0)
I actually want to drive him back home the 3 hours to see my old GI doc. Let him get a look at everything. These days I miss that guy. But we do plan on giving the antibiotic a chance for now. I just hope it doesn't make him feel worse, as antibiotics sometimes do on anyone's gut. It's just hard because like right now he's been curled up in bed or in the bathroom in pain and he's been that way for too long already.

scifigal, that was my impression too. Isn't IBS ONLY to be diagnosed when everything else has been ruled out? That's is a functional disorder with no signs of inflammation? That's what I was always told. I guess that's what puzzles me. To find as he said "immune cells" was concerning to him in the areas of inflammation, but still IBS? I don't get that.
Posted 1/21/2017 5:19 AM (GMT 0)
It's definitely not just IBS. Something immune-related is going on.

Can you get a copy of the biopsy report and tell us *exactly* what they found?
Posted 1/21/2017 12:07 PM (GMT 0)
Good grief. I echo the others. Seek another opinion ASAP: IBS does not cause inflammation or, as far as I know, lots of immune cells to appear in the tissues.

Even I know that very early (or mild) IBD starts off with inflammation and ulcers only appear once it gets worse. This doesn't mean that your son definitely has IBD, just that the lack of ulcers doesn't make it impossible. Also, granulomas don't always appear in Crohn's, in fact they often don't.
Posted 1/21/2017 5:05 PM (GMT 0)
As a parent who has a son with Crohn's I feel for you. I also know you are aware of the struggles on a different level since you have Crohn's. I hope you can find another opinion and feel heard for your sake and your sons! Best to both of you!
Posted 1/21/2017 5:33 PM (GMT 0)
My guess is that bacterial overgrowth can cause inflammation. Even NSAIDS cause inflammation. But plain old IBS does not. I think giving the antibiotics a try makes sense, and if he doesn't get better or the symptoms return, then go to a GI who has experience with IBD even if you have to travel.

Sometimes you really do have to wait for the Crohn's to manifest itself, which I know is very frustrating. Before I was diagnosed, I had severe anemia and all of the colonoscopy biopsies and GI tests were normal. Six months later, my anemia and bleeding returned and they were able to get positive biopsies for Crohn's. The first time around I just got "We don't know what caused the anemia or what's wrong with you." They weren't blowing me off, they just didn't find anything. Sorry you are going through this.
Posted 1/21/2017 7:05 PM (GMT 0)
Hi what antibiotics did he recommend ? Just wondering , I e been taking them too
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